Question:

hi, I would talk to her doc about starting a steroid-sparing drug (such as Methotrexate) and begining a taper on the pred. 20 mgs is not that high (depending on how long she’s been on that dose) but some people do react much more drastically to pred than most of us.   when did she start the pred?  You said her weight gain has been over the past two years… did it coincide entirely with the pred?   I know how easy it is to think that the meds are the problem.  I’ve often thought the same for myself.  Then I skip one of the drugs because "I’m not really sick, it’s just the meds" and within a short time I’m sick as a dog.  Then hubby is frustrated with me ’cause I’m too sick to function. but really, i do think it’s worth it to talk to the doc about trying to get the pred down.  MTX, Imuran, plaquenil and other meds also have risks, but weight gain (thus adult onset diabetes) is not one of them. Most importantly, as I’m sure you know, she must not taper or stop the pred without doctor supervision.  this can be very dangerous. *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Everything BJ said is true.  and my thoughts exactly. I also feel her sugars are not being controlled well enough and that maybe a big reason for her wt problems as well as the vasculitis. Has she ever considered going on the insulin pump to help her control better?  My son is on that and it does help.  PLUS the number of units your wife is taking is a lot. Prednisone does indeed induce and raise sugar levels so that maybe why. I think she need to get to a internal medicine doctor who specializes in the pancreas.  There should be something to help her better and to control her lupus better too… She is seeing a good rheumy right???  If not get another opinion, 35 is way to young, well really ANY age having that many problems needs to be seen by more specialists. hope you get more answers.. janers

Response:

Hi John,  I know a little about steriods, I started taking 40mg a day and started tapering off that lasted 4 yrs. It is common for to gain weight and moon face; gaining weight can make you go diabetic. But it might not be. You said "no change of diet" Well, maybe some of the weight gain could be from the regular diet she’s been on. Also, she’s probably not moving around as much as she did. Just the not moving around around will make the body gain wieght(I’m a slug most of time.) and John I was only 34 when I started taking steriods.  Is she on diabetic diet now? she should be, for sure.  write back and can you get her to this site? it woould help all. love and prayers, elfgirl "John" <johntre…@adelphia.net

wrote in message

news:zDze8.78$SD4.67256@news2.news.adelphia.net…

my wife has been in a mojor battle with the wolf for going on five years. she is losing lung capacity,has vasculitis, bone infarctions in her legs,knees,ankels and wrists.plus major weight gain over the past two

years

has gone from 120 to 250 with little or no diet change. my feeling are the steroids are killing her not the lupus.20mg of prednzone daily seems high.one other thing she is now allso a insulin diabedic on 85 units two times a day. seem to me these are all side effects of steroids? she is

ounly

35 do you guy have any input. she is suffering and i love her and it kills me to see this happen.  please help. thank you

—–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Hi John I am sorry your wife is having such a hard time. I really can relate. I too have been in a constant battle for the last 4 years. I have Lupus CNS  and I have polymyositis as well both of which you use steroids to treat. I have not responded to other treatments as plaquanil imuran cytoxan none worked for me and I have been steadily getting worse. I fear the side effects too I also have diabetes type 2 I am on amaryl and glucophage. I have to take fosamax now just got that today. As my rib cage is a mess and I flunked my bone density test last week.  I also have to do Gamma globulin treatments. At this point I don’t have alot of choices left so we maintain with Gamma  once a week and 40 mls Pred daily. I don’t have answers for me it is quality of life at this point a comfort zone I am 44 and I have a 12 year old daughter I want to somewhat keep up at least on good days she knows I am always here for her but can’t always do stuff with her. That is the hard part. I too gained the weight and actually eat less and really don’t absorb as much although people never believe that. What treatments have they tried on her  I would express your concerns loudly. I did recently I kinda knew I did have alot of choices but you need to let them know your concerns. I wish you luck and lotsa good people here so keep reading group. Take care and your wife is so lucky to have you Cindy – Hide quoted text — Show quoted text -John wrote:

my wife has been in a mojor battle with the wolf for going on five years. she is losing lung capacity,has vasculitis, bone infarctions in her legs,knees,ankels and wrists.plus major weight gain over the past two years has gone from 120 to 250 with little or no diet change. my feeling are the steroids are killing her not the lupus.20mg of prednzone daily seems high.one other thing she is now allso a insulin diabedic on 85 units two times a day. seem to me these are all side effects of steroids? she is ounly 35 do you guy have any input. she is suffering and i love her and it kills me to see this happen.  please help. thank you

Response:

Hi John, I always feel so badly for the spouses of chronic patients. They suffer too. I can tell that you love your wife very much. I don’t think 20mgs of pred is a particularly high dosage. She likely needs that with the vasculitis and lung problems. You are right though, the side effects are difficult. Is she on anything like Plaquinil or Imuran? These drugs may help her to get on a lower level of prednisone. Talk to us about your feelings. We are here to help if we can. BJ-Saskatchewan, Canada "John" <johntre…@adelphia.net

wrote in message

news:zDze8.78$SD4.67256@news2.news.adelphia.net… – Hide quoted text — Show quoted text -

my wife has been in a mojor battle with the wolf for going on five years. she is losing lung capacity,has vasculitis, bone infarctions in her legs,knees,ankels and wrists.plus major weight gain over the past two

years

has gone from 120 to 250 with little or no diet change. my feeling are the steroids are killing her not the lupus.20mg of prednzone daily seems high.one other thing she is now allso a insulin diabedic on 85 units two times a day. seem to me these are all side effects of steroids? she is

ounly

35 do you guy have any input. she is suffering and i love her and it kills me to see this happen.  please help. thank you

Response:

my wife has been in a mojor battle with the wolf for going on five years. she is losing lung capacity,has vasculitis, bone infarctions in her legs,knees,ankels and wrists.plus major weight gain over the past two years has gone from 120 to 250 with little or no diet change. my feeling are the steroids are killing her not the lupus.20mg of prednzone daily seems high.one other thing she is now allso a insulin diabedic on 85 units two times a day. seem to me these are all side effects of steroids? she is ounly 35 do you guy have any input. she is suffering and i love her and it kills me to see this happen.  please help. thank you

Response:

Question:

I have both of the above.  I finally had to see my Dr. today, as I have difficulty getting up from a chair if I have been sitting more than 1/2 hour, and if I try to get up off of the floor, like to pick something up, it is painful. I am on Celebrex, but it has not helped much.  Some days I am just fine, but these last three months have been no picnic, and I am hoping for summer to come quickly as maybe my bones will feel better.  My Dr. took some tests, and feels that the Fosamax is causing more stiffness in my bones, and I think she is right.  I had this once before, and instead of waiting one hour after taking Fosamax to eat, she told me to wait 20 mins.  Well, I did so well I went back to waiting one hour until I ate something. So, here are my questions: 1.  Men get osteoporosis too and I was told that many people who have osteoporosis have      osteoarthritis.  Is this true with lots of you folks here? 2.  If you take Fosamax for osteoporosis, have you had to discontinue it due to muscle aches? 3.  Do you feel better when it is warm outside? I really appreciate any replies, as I am only 52, but feeling quite old lately. The good side is that I met a wonderful lady in the assisted living quarters today, while waiting for my test results.  She has both of these health problems as well, as I am going to start visiting her often.  She is very lonely, as she has one daughter who lives states away. Thanks all. Kate

Response:

- Hide quoted text — Show quoted text – I have both of the above.  I finally had to see my Dr. today, as I have difficulty getting up from a chair if I have been sitting more than 1/2 hour, and if I try to get up off of the floor, like to pick something up, it is painful. I am on Celebrex, but it has not helped much.  Some days I am just fine, but these last three months have been no picnic, and I am hoping for summer to come quickly as maybe my bones will feel better.  My Dr. took some tests, and feels that the Fosamax is causing more stiffness in my bones, and I think she is right.  I had this once before, and instead of waiting one hour after taking Fosamax to eat, she told me to wait 20 mins.  Well, I did so well I went back to waiting one hour until I ate something. So, here are my questions: 1.  Men get osteoporosis too and I was told that many people who have osteoporosis have      osteoarthritis.  Is this true with lots of you folks here? 2.  If you take Fosamax for osteoporosis, have you had to discontinue it due to muscle aches? 3.  Do you feel better when it is warm outside? I really appreciate any replies, as I am only 52, but feeling quite old lately. The good side is that I met a wonderful lady in the assisted living quarters today, while waiting for my test results.  She has both of these health problems as well, as I am going to start visiting her often.  She is very lonely, as she has one daughter who lives states away. Thanks all. Kate

Hi Kate..I am only 49 and have osteopenia (on my way to osteoperosis) I take Fosamax. I also have PMR (tremendous muscle aches in the whole body controled by prednisone). The muscle pain is NOT the result of taking fosamax. I feel better in warm weather only because I love the sun. Nice of you to visit the lady in the assisted living quarters. A good deed indeed! marianne

Response:

 I also have PMR (tremendous muscle aches in the whole body controled by prednisone). The muscle pain is NOT the result of taking fosamax.

Forgive the ignorance of newbies, but what is PMR? Thanks — Reima and Dan

Response:

Forgive the ignorance of newbies, but what is PMR?

You’re not ignorant! It’s Polymyalgia Rheumatica. http://www.arthritisinsight.com/medical/disease/pmr.html ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. http://www.arthritisinsight.com/help/donationdrive/index.html AI 2001 Holiday Donation Drive

Response:

Thank you Marianne.  Much appreciated. Kate – Hide quoted text — Show quoted text – I have both of the above.  I finally had to see my Dr. today, as I have difficulty getting up from a chair if I have been sitting more than 1/2 hour, and if I try to get up off of the floor, like to pick something up, it is painful. I am on Celebrex, but it has not helped much.  Some days I am just fine, but these last three months have been no picnic, and I am hoping for summer to come quickly as maybe my bones will feel better.  My Dr. took some tests, and feels that the Fosamax is causing more stiffness in my bones, and I think she is right.  I had this once before, and instead of waiting one hour after taking Fosamax to eat, she told me to wait 20 mins.  Well, I did so well I went back to waiting one hour until I ate something. So, here are my questions: 1.  Men get osteoporosis too and I was told that many people who have osteoporosis have      osteoarthritis.  Is this true with lots of you folks here? 2.  If you take Fosamax for osteoporosis, have you had to discontinue it due to muscle aches? 3.  Do you feel better when it is warm outside? I really appreciate any replies, as I am only 52, but feeling quite old lately. The good side is that I met a wonderful lady in the assisted living quarters today, while waiting for my test results.  She has both of these health problems as well, as I am going to start visiting her often.  She is very lonely, as she has one daughter who lives states away. Thanks all. Kate Hi Kate..I am only 49 and have osteopenia (on my way to osteoperosis) I take Fosamax. I also have PMR (tremendous muscle aches in the whole body controled by prednisone). The muscle pain is NOT the result of taking fosamax. I feel better in warm weather only because I love the sun. Nice of you to visit the lady in the assisted living quarters. A good deed indeed! marianne

Response:

Question:

posted: Di, I am rushing you a red-headed stud muffin to take care of you. Let him do all the work–ALL THE WORK–and you just breathe….gently.

In that case… Uhhhh, I haven’t been feeling too well either, lately. I could use a studmuffin, but he doesn’t have to have red hair. Just kidding…. But if you are sending studmuffins, especially those that do work…. Rose

Response:

 {{{{{Di}}}}}  You have to stop hurting yourself like this.  I think they need to wrap you up from head to toe to protect you. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

Honey, get yourself some 4" wide ace bandages and get your sister to wrap you up. Not so tight you can’t breathe, but tight enough to support you and take the stress off the rib muscles. Ya can’t heal if ya keep using that area. Your going to have to take it even easier. P. S. I got your hysterically funny card yesterday. I think both our fairies are out in the smoking section. Love ya – DeeTee — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

– Hide quoted text — Show quoted text – While I was just waking up this morning, still not really conscious, I stretched.  I felt a *pop* at my broken rib site, and the pain was excrutiating.  Oh cripes!!!!  I didn’t even DO ANYTHING!  I didn’t pick up laundry, or lift anything else heavy.  I was a good girl. I called my sister, who convinced me to call my doc.  So, I did.  My doc thinks that it’s very possible that I did snap some newly forming scar tissue.  I asked her if she felt that I should go to the emergency room again.  She didn’t think so.  She said all they could do was take more xrays, which would take about 5 hours, then just send me home with the same instructions as last time. Basically, there is nothing to be done, except painkillers, heat/ice, rest with a pillow against my side to splint it, and just wait it out. It could take upwards of 6-8 weeks.  Same ol’ same ol’. So now, I’m back to Square 1.  This is very depressing. — Di take out the trash to email me "There is more in the human being to celebrate than to denigrate." Albert Camus "When one tugs at a single thing in nature, he finds it attached to the rest of the world"  John Muir  

Question:

I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily.

HI!< waving  moderate to severe RA here, female, 44 with a family of 3 kids, but they are still young. I am on antibiotic treatment for RA, and holding my own pretty well with it, but I do still have some toes with damage from the early days and a couple of fingers joints that are not responding as well as the rest of me.  I can relate, and am looking forward to getting to know you.  Liz G.

Response:

PS. Im 49 but have had RA for nearly 21 years. No one could tell until a few years ago when my hands went completely ’south’ and now that they have been repaired its hard to tell unless you are paying attention.

Hi johnie, I wonder if you would let me know how well your hands function since being repaired.  Can you close your hand all the way or just part of the way?  I’m afraid to get surgery on my hands because a finger joint replacement made my hand less functional. Thanks, Linda T.

Response:

Hi!  I am 32. DX with RA at 28….I begin showing symptoms at 25, shortly after I got married. I tell Rich that he got me after the warranty expired. :O)  I had very aggressive RA for 2 years and I stupidly refused to take DMARD in hope of getting pregnant. When I came to my senses, I had damage in my feet and slight turning of my fingers…ruined knees and knuckles that look like the outline of the Rocky Mountains. The reader’s digest version of this tale is that  Rich and I adopted a beautiful baby girl~refered to as the Princess of the Puddle~ who has lots of Cyber Aunts and Uncles in ASA. I am sorry you had to join us, but this is a place full of wonderful people! Amy I live in a world of mystery and intrigue. I teach kindergarten. Come see the "Princess of the Puddle" at http://hometown.aol.com/lkgoddess/indexhtml.html

Response:

Hi Debbie, Welcome to ASA.  I’m 61, but have had RA since I was 29.  For years, the damage didn’t show even though I was in a lot of pain.  That’s why you need this support group.  Only those who have arthritis can understand what you are living with.  I am doing pretty well now on gold shots and Arava together, but have considerable damage in spite of years of gold shots. This is a very exciting time for us with so many new treatments now and in the future.  This is a very supportive group, and many of the members are young, so you will fit right in. Best wishes, Linda T. PS:  I’m new to the internet too.

– Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Linda T.

– Hide quoted text — Show quoted text – I would be interested in seeing the photos, johnie, because your right hand before surgery sounds like my right hand now.   I am going to see a hand surgeon one of these days, but I’m going to ask him a lot of questions before deciding on anything.  Thanks for your response. Linda T. Hi johnie, I wonder if you would let me know how well your hands function since being repaired.  Can you close your hand all the way or just part of the way? I’m afraid to get surgery on my hands because a finger joint replacement made my hand less functional. Linda, I had all the MIP’s relaced in my right hand with a complete rebuild of the wrist including a tendon move(took the little tendon by the thumb and moved it over to the little finger cause that tendon was worn down to threads). It all works. Before surgery my right fingers were at a 90 degree angle to my hand and now they are straight and easily 85% functional. I can close my fist to around 80-85% which is good enough for me. They both are extremely strong and I can shake hands with all but the real vise-grip maniacs. My left hand was different. Jus 2 MIP’s were relaced and the other two cleaned out. The wrist was completely collapsed and had to be fused and has been an easy adjustment to make. I would recommend it to anyone losing function and experiencing pain especially if they could get my surgeon//Dr. Margolis here in Tucson. He is a keeper. I have photos before and after that I can send as jpegs if you would like to see. johnie

Response:

Wow — my hand surgeon’s name is Dr. Margles and he is in the Boston area. For some reason that struck me as funny. Dr. Margles is a keeper as well. Duckie – Hide quoted text — Show quoted text – ….. especially if they could get my surgeon//Dr. Margolis here in Tucson. He is a keeper. I have photos before and after that I can send as jpegs if you would like to see. johnie

Response:

I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Hi Debbie, I’m 41, female, with RA recently diagnosed (but had Fibromyalgia diagnosed 3 years ago). I took Arava last summer and it worked wonders, but rotted out my stomach, so now I’ve been on methotrexate for three months and it helps some, but I still fell pretty stiff and sore and EXHAUSTED! I’m on LT disability from previous employer now and it’s been pretty rough as I used to be type A personality, working no matter how sick, etc. But I’m finally accepting and maybe even sometimes actually…enjoying… not being superwoman. take care! -kk

Response:

Linda, I’ll clean them up a bit and send them to you tommorrow sometime. johnie – Hide quoted text — Show quoted text – I would be interested in seeing the photos, johnie, because your right hand before surgery sounds like my right hand now.   I am going to see a hand surgeon one of these days, but I’m going to ask him a lot of questions before deciding on anything.  Thanks for your response. Linda T. Hi johnie, I wonder if you would let me know how well your hands function since being repaired.  Can you close your hand all the way or just part of the way? I’m afraid to get surgery on my hands because a finger joint replacement made my hand less functional. Linda, I had all the MIP’s relaced in my right hand with a complete rebuild of the wrist including a tendon move(took the little tendon by the thumb and moved it over to the little finger cause that tendon was worn down to threads). It all works. Before surgery my right fingers were at a 90 degree angle to my hand and now they are straight and easily 85% functional. I can close my fist to around 80-85% which is good enough for me. They both are extremely strong and I can shake hands with all but the real vise-grip maniacs. My left hand was different. Jus 2 MIP’s were relaced and the other two cleaned out. The wrist was completely collapsed and had to be fused and has been an easy adjustment to make. I would recommend it to anyone losing function and experiencing pain especially if they could get my surgeon//Dr. Margolis here in Tucson. He is a keeper. I have photos before and after that I can send as jpegs if you would like to see. johnie

Response:

Debbie, Hi! I’m 37 and was diagnosed with RA 16 years ago. I’m on Enbrel and MTX and, like you it’s my fingers that "give it away". Sounds like we’ve been on Enbrel for about the same amount of time, too. Right now, I’m in my first flare in a looooooong time and I’m not handling it very well. My RD put me on a prednisone zap (6 days, starting at 30 mg and decreasing 5 mg each day) and that’s pretty much had no good effect. Then, yesterday I did a really dumb thing. I was so frustrated from this miserably diseased body of mine that I decided to "show it who is in charge". I went for a 2 mile walk on my treadmill, bad ankles & all. And that just served to remind me that it’s the disease that’s in charge. RA stinks. But ASA is a great place to be! Meg

– Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Hi Debbie,   Glad you found this group. There’s a great group of people here   My brother, now 44, was diagnosed with RA when he was around 22, still in university. He’s got what his doctor calls galloping RA. He had to retire from teaching at 35; married with 2 children, he’s a stay at home kinda guy – a bit of an academic.   I, on the other hand, am only slightly nutz as I age gracefully with fibromyalgia among other things.   You’ll find all kinds of opinions on all manner of things with this group, with an occasional recipe thrown in from time to time. Fruitcake, anyone? Cheers! Carla http://www.brunnet.net/terrier I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

I would be interested in seeing the photos, johnie, because your right hand before surgery sounds like my right hand now.   I am going to see a hand surgeon one of these days, but I’m going to ask him a lot of questions before deciding on anything.  Thanks for your response. Linda T.

– Hide quoted text — Show quoted text – Hi johnie, I wonder if you would let me know how well your hands function since being repaired.  Can you close your hand all the way or just part of the way? I’m afraid to get surgery on my hands because a finger joint replacement made my hand less functional. Linda, I had all the MIP’s relaced in my right hand with a complete rebuild of the wrist including a tendon move(took the little tendon by the thumb and moved it over to the little finger cause that tendon was worn down to threads). It all works. Before surgery my right fingers were at a 90 degree angle to my hand and now they are straight and easily 85% functional. I can close my fist to around 80-85% which is good enough for me. They both are extremely strong and I can shake hands with all but the real vise-grip maniacs. My left hand was different. Jus 2 MIP’s were relaced and the other two cleaned out. The wrist was completely collapsed and had to be fused and has been an easy adjustment to make. I would recommend it to anyone losing function and experiencing pain especially if they could get my surgeon//Dr. Margolis here in Tucson. He is a keeper. I have photos before and after that I can send as jpegs if you would like to see. johnie

Response:

Hi Debbie, Im Jennifer, Im 29 was diagnosed when I was 19.  I have a rare form like what Yolan mentioned that has some symptoms of Lupus.  You will find that the majority of people with RA are your age and younger.  Mine is under control now with Enbrel.  I took plaquenil, gold shots, prednisone, all types of Nsaids, then methotrexate.  I had my first hip replacement at 22, then 2 revisions when I was 28.   Glad you found the group Still’s Disease Information http://www.stillsdisease.org

Response:

Welcome out of the bushes Debbie.  I am 52 and most of my surgery was done before age 46 so do I count?  Anyway, there will more along to welcome you. Duckie – Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Hi johnie, I wonder if you would let me know how well your hands function since being repaired.  Can you close your hand all the way or just part of the way?  I’m afraid to get surgery on my hands because a finger joint replacement made my hand less functional.

Linda, I had all the MIP’s relaced in my right hand with a complete rebuild of the wrist including a tendon move(took the little tendon by the thumb and moved it over to the little finger cause that tendon was worn down to threads). It all works. Before surgery my right fingers were at a 90 degree angle to my hand and now they are straight and easily 85% functional. I can close my fist to around 80-85% which is good enough for me. They both are extremely strong and I can shake hands with all but the real vise-grip maniacs. My left hand was different. Jus 2 MIP’s were relaced and the other two cleaned out. The wrist was completely collapsed and had to be fused and has been an easy adjustment to make. I would recommend it to anyone losing function and experiencing pain especially if they could get my surgeon//Dr. Margolis here in Tucson. He is a keeper. I have photos before and after that I can send as jpegs if you would like to see. johnie

Response:

I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am..   Debbie.

Response:

Debbie,  Actually when I was your age I was a lot worse than I am now… so there’s hope. I take the Enbrel with MTX. I was post menapausal by 42, they said because of th RA, so I also take Fosamax and Estrogen replacement treatment. At one point, I lost 35 pounds. It’s taken about 5 years to get most of it back except 10 pounds. I think that must have been muscle. I’ve had a shoulder replacement and that’s pretty good now. Wednesday I see the orthopedic surgeon who specializes in hands. I have 2 others (one for the shoulders, one for the knees).  I think they will do a little work on those hands but I’ve got a computer conference in January, so they will have to wait until that’s done. I’m holding off on the knees as long as I can but the hands are not good to wait on.  Welcome to the group. I’m 50 and want to bugaloo down funky broadway … soon I hope. Marge

– Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Debbie, Welcome to the site!!!  Sorry that you have to join us all.  My name is Donna G   (the G is because there is another Donna also on this site), I am 39, but was about 36 when I was diagnosed with rhuematoid arthritis.  I have been told by my rhuematologist that I have quite severe arthritis, and yet I do not have a great deal of outward signs (yet) of having this disease.  I do have joint damage in a number of joints, and also have some lung damage from the disease.  These, of course, are all things that no one can see on the outside.  I have some beginning deformity in some of my fingers, but otherwise you would not know that I have the RA unless you see how I walk and move in the mornings or during a major flare.   This group is a wonderful place to find support!  You will gain much knowledge and many new friends if you stick around here!!!  There are others out there that have some form of arthritis, that are as young as you.  Don’t let age be an issue, as people of all ages and from every corner of the world come to this site! Please know that you are in my thoughts and prayers!!!  Please also rest in the knowledge that you’ve found a wonderful place to visit, share, vent, ask questions, etc, etc. Hope you are able to enjoy the blessed holiday season that is upon us!!! Donna G   : )

Response:

Hi Debbie, I am 46 now, I was diagnosed when I was 41 and the first 3 years I was doing relatively well. There were no outer signs than just the deformity of my hands. I have a very rare form of RA, combined with a lot of symtoms (sp?) of SLE. I do have some organ damage. Due to prednisone I have a very healthy look. Blushing face. But I just can walk a few steps and my hands, arms and shoulders are gving me a lot of problems. I just to think that quiting work would end my life, but I found new hobbies and most of the time I am feeling quit happy with what I am and what I have. I have lots of trouble with medicine. I tried them all from salazopyrine to gold, from plaquenil to ciclosporine and arava too. Now I am waiting to get Enbrel or Remicade. But in the Netherlands there is a very big shortage. So I am on a wating list. This group is wonderfull. Lots of different people here where you can relate with. So think positive and stay with us Yolan – Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

hi there Debbie, well i’m not quite in the same age group as you guys, but i’m still not one of the "older" generation that has Arthur, i’m 22 in January and have had Arthur for 6 years now, and apart from the weight gain from prednisone plus the hidden hard times with walking, moving things, opening, lifting things etc, nup, ya cant see anything wrong with me either.. hehe also the "sausage" fingers plus the odd lump and bump of fluid that turns up kinda shows..hrmmms plus the ongoing pleurisy, rashes etc.. damn, the more ya talk about these things the worse ya feel aye..time to go complain to my mum i think good luck.. Victoria.

– Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Hi Debbie, I’m 35 and have been dealing with this sh*t for 5 years. You’ll find that there are a lot of us and many much younger. Consider yourself lucky it didn’t hit when you were much younger. ~Krissy See my pond: http://members.aol.com/KrissyJo/ponds.html Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.

Response:

Diagnosed with RA and SLE at 23 and I’m 34 now.  My twin sister was diagnosed with SLE at 17 and lived to be 20. Kendall F. Stratton III Fort Fairfield, Maine USA http://home.maine.rr.com/k3 "Our love for each other may not be explained We live in a world where tears must fall like rain Most of us don’t wish to cause each other pain"    – Gordon Lightfoot – Heaven Help the Devil – Copyright (c) 1982

– Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Hi Debbie,   I’m 43 now and was diagnosed at age 25. It’s been a long haul and joint damage has been done. But, the same as you (and most of us here), noone can tell by looking at me that I have RA, much less guess for how many years. That’s why this place is so great…we all understand. Sorry you had to, but, glad you found us : )                                             Be well,  Patty *~A friend is someone who reaches out for your hand, and touches your heart.~*

Response:

Hi Debbie, I come under the 46 barrier!! I’m 40 male and have RA. I was diagnosed in Mar 99. I’m currently on MTX and Pred when required.                                 Regards Andy M..  [Lincoln(UK)] – Hide quoted text — Show quoted text – hi there Debbie, well i’m not quite in the same age group as you guys, but i’m still not one of the "older" generation that has Arthur, i’m 22 in January and have had Arthur for 6 years now, and apart from the weight gain from prednisone plus the hidden hard times with walking, moving things, opening, lifting things etc, nup, ya cant see anything wrong with me either.. hehe also the "sausage" fingers plus the odd lump and bump of fluid that turns up kinda shows..hrmmms plus the ongoing pleurisy, rashes etc.. damn, the more ya talk about these things the worse ya feel aye..time to go complain to my mum i think good luck.. Victoria. I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Debbie, I dont know what part of the country you live in but herer is a website run by a great guy here in Tucson that list meeting and events for people 18 to 50 in different parts of the country. It is expanding at a slow rate but expanding nonetheless. He will also advise as to how to start a local group. Getting together with others that share the same issues arthur dumps on us can be liberating and extremely helpful sometimes. Here is the URL and welcome to ASA. http://www.arthritisjoints.com johnie PS. Im 49 but have had RA for nearly 21 years. No one could tell until a few years ago when my hands went completely ’south’ and now that they have been repaired its hard to tell unless you are paying attention. – Hide quoted text — Show quoted text – I’d like to hear from some people like me. I’m 46,female,married,have 3 kids all grown up now, and suffer daily. I take Embrel now ( 19 monthes ) I do ok. But to look at me I look healthy. You have to look  at my deformed fingers to tell. I just found this groop on my new web tv. I’m new at this stuff but it helps kill time, and it’s fun..I would enjoy hearing from you if you can relate to me. I  don’t mean to discriminate but I just don’t know anyone as young as me,thats as bad as I am.. Debbie.

Response:

Hi, Debbie… although I am now 51, my PA (psoriatic arthritis, related to the skin disease psoriasis, but very similar to RA) was first officially diagnosed at 42, although I probably had it for about 5 years or so before that. You might check with the Arthritis Foundation about their "Arthritis in Prime Time" conferences that are held once a year.  If I remember, the last time I attended there were about 2,000 people attending and many researchers, rheumatologists, physical therapists, and others involved with workshops and seminars and a nice dinner. The ones I attended were in southern California, but I suspect there may be others in other parts of the country.   See:  http://www.arthritis.org/  to find more information, or contact them in your local area by asking information for a telephone number. They also have monthly meetings for younger people with arthritis that you may find helpful. Best regards,

Response:

Question:

Just wondered if anyone has any input on this, or has Crohn’s, or severe IBS.

You may want to check out the new IBS/Crohns website on about.com at: http://ibscrohns.about.com My best, Rick http://arthritis.about.com

Response:

As I sit here thinking about when I can take my next dose of Librax, i can sympathize with your problem. I am told it is IBS for me and they won’t look into anything else (yet – and I won’t let them right now anyway). There is another possibility which is harder to determine and I hope if you have a colonoscopy you will be assured they will do an ANA titre on any biopsies done.  Lupus can affect the gut via vasculitis which can cause lesions that bleed and can cause severe IBS-type pain. My sister had *extremely* high ANA titres (sorry, don’t recall how much) in biopsies taken during a colonoscopy.  But no signs of Crohn’s.   Best wishes on this – I hope that whatever the answer is they can get a grip on it and give you some relief.  And let us know what happens as I would like to get off this rollercoaster myself (gut pain, diarhhea, etc). hugs, *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

snip

as I would like to get off this rollercoaster myself (gut pain, diarhhea, etc). hugs,

KC have you ever had endreometriosis? (sp) I think I have it in my bowels as well as other that they gave me the Lupron for. I hope you find answers too. I go on the 25th to discuss this with my DR. Tina/mookeysmom  "new photos added to photo album & slide show": http://community.webshots.com/album/1423111eQdinNWDrt  dont 4get to sign my guestbook )  

Response:

HI LIZ I have been dealing with IBS for several years. It is a bummer and my meds only seem to aggravate it. I have a freind who has CROHNS he has had a colonoscopy for several years and does quite well.he is very active. Wishing you much luck.Bev M

Response:

Hey Bev, you do mean colostomy don’t you.  LOL I had an uncle who had one, I never knew about it for man many yrs.  A lot of people that have one do well with it and it can be regulated with proper diet. There is also an ileostomy.  It is a little harder to control because stools are looser with this type of surgery. I myself have IBS and found that if I take metamucil every day and do not miss, then it adds bulk to the stools and really helps….You are right about meds, they can mess up a gut big time. Good luck to you with the colonoscopy and hope they can help ;you out there. — Janers "Somedays are diamonds, Somedays are stones" Somedays this pain won’t leave me the hell alone"

Response:

In article <ch85qsoce60oaef70miuedjrk8ull5r…@4ax.com

, KCat

<kcdoc…@ghg.net

wrote As I sit here thinking about when I can take my next dose of Librax, i can sympathize with your problem. I am told it is IBS for me and they won’t look into anything else

Was that *meant* to be ambiguous? — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/

For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/

For my other interests <URL: http://www.kitzbuhel.demon.co.uk/

Response:

Best wishes with your test.  A Sigmoidoscopy isn’t too bad.  Hopefully they’ll be able to give you some answers and better treatment.  BTW, it’s pretty common to have some kind of arthritis along with chronic bowel conditions.   Sandra

Response:

On Tue, 22 Aug 2000 19:24:13 +0100, you wrote:

In article <ch85qsoce60oaef70miuedjrk8ull5r…@4ax.com, KCat <kcdoc…@ghg.net wrote As I sit here thinking about when I can take my next dose of Librax, i can sympathize with your problem. I am told it is IBS for me and they won’t look into anything else Was that *meant* to be ambiguous?

And which part was ambiguous? I always intend to be ambiguous unless I mean to be otherwise…  :) *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

On 22 Aug 2000 17:15:22 GMT, you wrote:

snip as I would like to get off this rollercoaster myself (gut pain, diarhhea, etc). hugs, KC have you ever had endreometriosis? (sp)

Current discussion on that with ob-gyn is "you’re on the pill which controls mild endometriosis and you’re not having much in the way of symptoms so why go looking for it." (almost verbatim). My mom had it, sister, maternal aunt and maternal cousin.  All have had hysterectomies.   So there is the possibility that this is what is aggravating the spastic colon (IBS) stuff, yes.   Problem is, right now I just don’t have *time* to do anything about it but pop antispasmodics.  Liberal Librax   One thing about my so-called IBS is that it is *worsened* greatly by fiber (fruit, vegies, any fiber supplements, any stool softeners, etc.) which leads me to believe that it is not straightforward IBS which almost always benefits from fiber supplement.  I get these little snack cans of pears (i mean little – enough for a toddler maybe – why they think that’s enough for a teen is beyond me).  Anyway.. I digress… again… I eat these little 4 oz cans of pear pieces and that’s enough to send me into hyperspace with spasms on some days.  I can’t eat an apple and 1/4 of an apple causes discomfort.  Very frustrating to say the least. The one thing that *is* consistent with IBS is that before other symptoms cropped up, I did have problems now and then when I was in my 20s.  But only about 2 or 3 times a year (a stressful meal with my ex and his mother comes to mind).  

I think I have it in my bowels as well as other that they gave me the Lupron for.

that would make sense – they wanted to give my sister Lupron but she was too scared of it and went for the hysterectomy (though she is still having a lot of trouble with pain and diarrhea.)

I hope you find answers too. I go on the 25th to discuss this with my DR.

Best wishes… hopefully around November I’ll deal with this at least to some extent.   take care, *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

I have had IBS for many yrs.  I was always told it is a condition that we must live with.  The Metamucil helps a great deal taken on a regular basis.  In fact, if taken everyday, my IBS won’t act up at all.  Diet plays a big role also, plain old meat, veggies and fruit seem to work best with me. Good luck. Hugs, Susan

Response:

snip that would make sense – they wanted to give my sister Lupron but she was too scared of it and went for the hysterectomy (though she is still having a lot of trouble with pain and diarrhea.) snip KCat

I had a hysterectomy 10 yrs ago, they left 1 ovary and endro. came back bad. so now its lupron. I cant take birthcontrol or the hormone/steroids if ovary is removed. Im scared to death (hopefully notLOL) of Lupron, but what other options are there? Thanks Tina Tina/mookeysmom  "new photos added to photo album & slide show": http://community.webshots.com/album/1423111eQdinNWDrt  dont 4get to sign my guestbook )  

Response:

I always intend to be ambiguous unless I mean to be otherwise…  :)

hmmm, is that like I used to be indecisive, but now I’m not sure?  ;-p to our health kelly

Response:

On 23 Aug 2000 00:09:58 GMT, you wrote:

I had a hysterectomy 10 yrs ago, they left 1 ovary and endro. came back bad. so now its lupron. I cant take birthcontrol or the hormone/steroids if ovary is removed. Im scared to death (hopefully notLOL) of Lupron, but what other options are there? Thanks Tina

well, my Mom went years with one ovary but her endo didn’t come back while my sister had one left in and she is fighting a rapid regrowth of the endo.  My doc (not theirs) said she would never leave an ovary in (that seems to be the newer way of looking at this) as it does encourage regrowth in most cases.  I would *guess* that since you can’t have hormones (neither can my sister) then the next step would be calcitonin + vitamin D + calcium.  Have you ever tried Fosamax or Miacalcin?  I know someone on here can not take Fosamax – was that you? This is a different kind of hormone but still a hormone extracted from non-human source so I don’t know if you can handle it.  You would still experiences some osteoporosis probably but hopefully not to the extent that would be a huge concern?  My mom’s remaining ovary stopped working about 20 years ago and she has suffered no appreciable osteoporosis and only started hormones last year (why?) at age 68. So apparently some of us can get by without the hormones in terms of osteoporosis.  But it’s a total crap shoot as to who those "some of us" are. Past that I don’t know what your options are but if the Lupron seems to help and you are not experiencing any negative effects than that sounds like your best bet for now.  I have read one webpage written by a woman who feels her life/quality of life was greatly improved by lupron despite the "negative" impression many people have of this med. Hopefully you will fall into that category. If I can find the URL I’ll send it to you – that was one PC and several months ago. take care, *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Hi Liz: I too have a DX of IBS since about 1989 or 90 can’t remember.  I am having a hell of a battle with it right now, don’t know what has brought it on so bad but I too was just reading about Crohn’s and wondered the same thing. I have been so sick the past few days Diarrhea and vomiting at the same time (sorry) and aa lot of cramping. My Rheumy has now put me on a drug called Lotronex. I was on Lomotil for the past year or so and that kept making me go from one extreme to the other if you know what i mean. Please let me know what you find out! I had a flexablesigmoidoscopy by mistake back in 1989 or 90 from the Mayo Clinic, long story, wrong chart! anyway, that’s when they said I had IBS… I’VE NEVER BEEN THE SAME SINCE THAT TEST! Mary/az

Response:

Mary;,  saw this post and had to reply…..Have you had a scope done since the one at Mayo.  I would think if they found IBS even though is was a misttake at Mayo, then the doc should have followed you up with this. Does the Lotronex help this, I am not familiar with that drug.  I have to look this one up. Did he also tell you about adding bulk to your diet.  I have IBS and get frequent episodes of diarrhea.  Sometimes it hits after a growl, if you know what I mean.  Then boom to the nearest john or field which ever comes closest ha ha..  I have been on bentyl and lots of other goodies to try and stop it.  Now all of a sudden, I don’t have it as much but it took quite a few years on metamucil daily to get it under control.  And a big change was the damn amount of more pills that cause constipation, to control lupus and my heart flips…. Did you ever wonder why all the meds for lupus and arthritis cause the runs…..they want to keep us a moving so we don’t get so fatigued ha ha Well, that is my theory anyway… Good luck…Janers

Response:

On 23 Aug 2000 14:49:27 GMT, you wrote:

I always intend to be ambiguous unless I mean to be otherwise…  :) hmmm, is that like I used to be indecisive, but now I’m not sure?  ;-p

I think so… *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

I have IBS and taking calcium 3 times a day helps me and I also take imodium before my husband and I go out to dinner.                      Lynn J.           cr…@home.com

Response:

I also take imodium before my husband and I go out to dinner.                     Lynn J.           cr…@home.com

I can’t tell you what a lifesaver this has been to me! For yrs. I couldn’t go and enjoy a dinner out with anyone and I had to take imodium.  Now, I have cut down drastically on refined sugar and processed bread and the IBS has improved greatly.  Because of cutting the junk out os my diet, I have increased the vegetables, that must be the key for my improvement. INHO Hugs, Susan

Response:

Dear Lupies. Hoping for some feedback. I’ve been battling irritable bowel syndrome since I got sick 4 years ago, with (this is kinda yucky, sorry) chronic diarrhea and severe abdominal cramping.  I have treated in the past w/Donnatal anf Lomotil but in the last 2 years it has escalated to the point of more E.R. visits, and last week, rectal bleeding. (sorry again!). So,, they think it is probably Crohn’s disease and they are going to do a sigmodoscopy in a few weeks.   Just wondered if anyone has any input on this, or has Crohn’s, or severe IBS. liz ***********************************************    Love is the only house big enough for                   all the pain in this world. Martina McBride

Response:

Question:

This has been one great year!  Shoulder joint replaced in Feb, hip screws in Aug after a horrible July,  just when thought was doing pretty goo  it started hurting and am back to 2 crutches again so don’t know if have to go in again for hip replacement….now bone density test was bad and have to take Fosamax!  Suppose this is why hip is not doing so well.  Just when starting to reduce prednisone to try to get rid of some weight I have to take something else to put weight on (at least that’s what I read from osteoporis group), also makes bloated stomach, possible hair loss (need that to) and all the great gastro problems.  If anyone takes this without these problems, please tell me – need a little uplifting. Read in Arthritis Today another drug is coming out that has less side effects, hope this is true. Sorry – just really down today! Peggy

Response:

Peggy-I know that you are angry and frustrated.   With good reason. doing well or you would not be able to tolerate the cruthches).  They have a medication that may help you to regain lost bone mass. (It hasnt been THAT long, that lost bone was gone, and no way to reverse or even stop it). I have not taken it myself, but have read others comments.  And they found the GI problems manageable. There—-does that put anything in a better light?   Sometimes it just helps to see things from another perspective. Char

Response:

Question:

I just read this in an old posting as being something that helps with bone loss.

Response:

I take fosamax (Alendronate Sodium tablets) 5 mg to prevent bone loss from the long term use of prednisone.  Given at the 10 mg dosage, it can BUILD bone mass…depending on your need.  My bone density scan shows normal mass at present, but my mom had severe osteoperosis and I am post menopausal(not on estrogen replacement therapy at present), so I am at risk.  Until I can wean myself from the steroids, I feel better taking something that will help my bones.   If you are considering using fosamax, you should know that one of the side effects, although rare, is damage to the esophagus from esophigeal reflux, so I take it with plenty of water one hour before eating for best absorbtion.  I was also cautioned to stay upright and not to lie down after taking it to prevent the medication from "backing up" and causing problems. You will need a RX from your doctor for it.  That’s my 2 cents! Linda in NY

Response:

And I believe you should take extra vitamin D to help absorbtion of the calcium supplements which you should also be taking (probably)

Response:

Yes, thanks for the "vitamin D" tip.  Someone else just told me that I need to take 400 mg of D with 1200 mg of calcium….add two more to the pill box.  Shoudda bought stock in a pharmacudical company! Linda in NY

Response:

On 27 Feb 1999 19:10:01 GMT, bla…@novagate.com wrote:

And I believe you should take extra vitamin D to help absorbtion of the calcium supplements which you should also be taking (probably)

Try calcium citrate or other Krebs Cycle intermediate.  Calcium citrate will give you up to 40% absorbtion.  Also try to avoid oyster shell and unrefined calcium carbonate as they usually have unsafe lead levels.  If your on pred for a significant length of time you might want to ask about Fosimax. Come to think of I should really write down all my info for you guys. I’ve had to do a TON of research lately – my bones are in the YELLO area of the dexa scan and i’m only 28. I’ll get back to you guys  :P Firethorn – Hide quoted text — Show quoted text –

Response:

Question:

Hello:) I was just wondering….are any of you concerned about amenorrhea?

I haven’t had my period for a few years either.  I’m not taking any medication for it,  with the exception of calcium supplements.  I had a bone density done when I was 18 years old (I am 20 now) and it showed that I was beginning to develop osteoporosis.  Yet,  even when I heard the news I just didn’t care enough to do something to help myself.  I do want to have children and I know that I really need to be on some kind of estrogen replacement,  but I’ve had some very bad experiences with doctors and medications when I was in the hospital,  so I try to stay as far away as I can from using any kind of medication.      So I’m so scared about getting the dreaded period.  It disgusts me. I feel the same way.  My doctor once told me that by not getting my period or doing anything to help get it back,  I was shutting down part of my body. Supposedly I guess that was supposed to scare me,  but it only made me want to not help myself even more (being the control freak that I am:)   Well,  I just wanted to let you know I can relate.  Have you talked to your doctor about taking meds or anything?  I am going back in three weeks,  so maybe I will change my mind.  I doubt it though. Hugs, Nicole:0)

Response:

Hi all, I was just wondering….are any of you concerned about amenorrhea?  (no periods)  I havne’t had one for years and years.  It’s been suggested that I take the pill, but that really freaks me out.  Then there’s the whole thing about osteoporosis.  Are any of you concerned?  I sort of waffle back and forth.  Some times I care about my body and other times I just don’t give a darn.  spoilered s s s s ss s s s s s s s s s s s ok.  So I’m so scared about getting the dreaded period.  It disgusts me. It makes me feel dirty and disgusting.  Once or twice in my recovery I’ve gotten it back and it triggered me into major relapse.  I know it stems from all sorts of abuse issues.  I know about it all, but still it does a number on my psychological well being.  I ugess I think being a *woman* means I’ll attract attention (yeah right, I’m incredibly ugly) or that I’ll cause someone to do awful things to me.  That I’ll be responsible for creating someone into a monster who hurts people in all sorts of ways.   So that’s it for now.  Lots of love and hugs, Rebecca

Response:

Hi all, I was just wondering….are any of you concerned about amenorrhea?  (no periods)  I havne’t had one for years and years.  It’s been suggested that I take the pill, but that really freaks me out.  Then there’s the whole thing about osteoporosis.  Are any of you concerned?  I sort of waffle back and forth.  Some times I care about my body and other times I just don’t give a darn.

Yes, I know what you mean (including the spoilered stuff). I’m supposed to be taking the Pill to bring my period back, but I don’t want to because of the same reasons you listed, plus the pills make me nauseous. I take Fosamax, which doesn’t bother me. Every now and then, I’ll have a scare (like the fact that I’m only 20 years old and already losing bone mass), but I forget about it the rest of the time. Right now, my ankle hurts for no apparrent (sp.?) reason, and I’m too scared to get it x-rayed because it might be a broken bone. If that’s the case, then it’s probably because my bones are weak, because I didn’t do anything to hurt it. So yeah, do as I say, not as I do! http://hello.to/planetdear Everyone has the right to be beautiful.

Response:

I was just wondering….are any of you concerned about amenorrhea?  (no periods)  I havne’t had one for years and years.  It’s been suggested that I take the pill, but that really freaks me out.  Then there’s the whole thing about osteoporosis.

Hi Rebecca, Well, BC pills are *not* the best solution. But doing nothing is not safe either, as I learned to my cost. The recommended option is HRT (along with calcium supplementation), and this can be done in such a way as to prevent any return of menstruation, but to protect against osteoporosis and other problems. I shall cut and paste what I wrote in a previous article, as this may be helpful to you. It’s also important to note that hormonal/calcium treatment alone will not avoid osteoporosis if nutrition is still grossly inadequate. In addition to maintaining an appropriate hormone profile and calcium intake, the calcium must be properly absorbed (which is influenced by dietary factors, although some forms of calcium are better absorbed than others) and the body must have adequate nutrition to be able to maintain its normal repair/renewal processes on bone. Anyway, the way to do this type of HRT is to use a "non-cyclic" regime, where you take the same dose every day instead of mimicking a natural 28-day cycle. You will need two drugs, a progestin and an estrogen. I take medroxyprogesterone acetate ("provera") 5mg daily, and estradiol valerate 2mg daily. You might need a slightly different dose level, it varies with body weight and individual sensitivity to the drugs. The provera (which is also available as a long-term injection, once every three months, if you prefer it that way) stops the menstrual cycle dead in its tracks (in fact the injected version, depo-provera, is licenced for long-term contraception), the estradiol replaces the estrogen that you would have if your body was functioning normally. The estrogen is responsible for the protective effects: it prevents vasomotor instability (hot flushes, night sweats etc), and reduces the risk of osteoporosis, cardiovascular disease and so on. The progestin is necessary both to prevent endometrial hyperplasia and to inhibit menstruation. As I have mentioned before, I have severe osteoporosis (and a lot of other problems besides) and have been severely underweight for 25+ years — I have never menstruated normally. I started HRT and calcium treatment 4 years ago when my osteoporosis was diagnosed. Because of my age (34) it’s too late to reverse the damage, but the treatment should hopefully slow down its progress a great deal. Hope this info helps — please write again if you need to know any more. love from Julie A.

Response:

Hi Kelly, Maybe you should get that ankle checked out?  I know it’s scary, but you need to take care of yourself.  I broke my arm (at the shoulder) a couple of year ago (e.d. related, I’m sure) TAke care! Love rEbecca – Hide quoted text — Show quoted text – Hi all, I was just wondering….are any of you concerned about amenorrhea?  (no periods)  I havne’t had one for years and years.  It’s been suggested that I take the pill, but that really freaks me out.  Then there’s the whole thing about osteoporosis.  Are any of you concerned?  I sort of waffle back and forth.  Some times I care about my body and other times I just don’t give a darn. Yes, I know what you mean (including the spoilered stuff). I’m supposed to be taking the Pill to bring my period back, but I don’t want to because of the same reasons you listed, plus the pills make me nauseous. I take Fosamax, which doesn’t bother me. Every now and then, I’ll have a scare (like the fact that I’m only 20 years old and already losing bone mass), but I forget about it the rest of the time. Right now, my ankle hurts for no apparrent (sp.?) reason, and I’m too scared to get it x-rayed because it might be a broken bone. If that’s the case, then it’s probably because my bones are weak, because I didn’t do anything to hurt it. So yeah, do as I say, not as I do! http://hello.to/planetdear Everyone has the right to be beautiful.

Response:

Hi everyone. Well, I hate to sound like the "downer" of the group, but osteoporosis *is* serious.  I realize everyone knows it already….but do you guys really want to be in your 20s and NOT able to get up a flight of stairs because your bones are too weak? What happens if you decide you DO want to recover one day down the line?  What then?  Don’t you think you might regret it when you can’t do the things that others can do because you didn’t menstruate for so many years?  What then, when it’s NOT fixable? I hate to sound like a mother hen, but osteoporosis is scary – you may not feel it today, but one day it will hit you out of the blue (Kelly’s ankle, for example). As my doctor says, "People with osteoporosis don’t ‘fall, and break a hip’….they ‘break a hip, and fall.’"  It’s true. Be careful. becky

Response:

Question:

On 3 Feb 1999 15:58:42 GMT, bbor…@aol.com (Bbornem) wrote:

I am a 46 yr old female and I just had a bone scan yesterday which revealed I already have osteoporosis of the hip and slightly of the spine.  The doctor said it could have been due to the steroids I took over a 2 month period in 1997 when I had my first (and only) severe MS attack.   Has anyone else had this happen?  It makes me concerned that future episodes and the need for steroids could be very damaging.

I, too have osteoporosis, which was diagnosed when I was 54.  I don’t know if it is due to the steroids or not, but I do know that I cannot take steroids again.  Since the effect of steroid treatment is short-term, I have avoided them since my disability retirement. I take Fosamax, calcium with magnesium, and do weight-bearing exercises in the shallow end of a swimming pool. Two serious problems with osteo and MS:  poor balance may result in a bad fall with fractures which puts you further behind in trying to move and the need to use a wheelchair limits the weight-bearing exercise that is critical to maintaining bone. I think that all of us should be working with our neuros to evaluate how critically needed steroid treatment is in each instance.  Routine use of steroids may well result in conditions that are more dangerous than not using them at all. Kae

Response:

I am a 46 yr old female and I just had a bone scan yesterday which revealed I already have osteoporosis of the hip and slightly of the spine.  The doctor said it could have been due to the steroids I took over a 2 month period in 1997 when I had my first (and only) severe MS attack.  I was in the hospital for 11 days on IV steroids and then oral medication for a month or two when I returned home. Has anyone else had this happen?  It makes me concerned that future episodes and the need for steroids could be very damaging. Thanks, Coni

Response:

Question:

Sarah,      I don’t know why you are going through this. But I skipped my monthly 2 months in a row and finally got it on time today. I also get mine on the same day, same hour, you can bet on it. So when I skipped it you can only imagine what I was thinking. I went to get a checkup with my doc and he said it was all stress related. Maybe there is a connection there for you. Hope you feel better soon. JoLynn

Response:

Sarah…… everyone else stop reading (yuck), I had the same problem and I was always as regular as clockwork.  33 years old (feel 100 but not redy for menopause) and 2 months ago, I was 2 weeks late and it only lasted for 2 days.  I waited and waited…. skipped a month and then this month only lasted 2 days again.  Yep..RA does influence it "cause" maybe isn’t the right word.  Also, this all started when I started the prednisone and that does it too.  You didn’t say what meds you were on.  You might want to check the side effects. Christy

Response:

I was diagnosed with RA at 38 and was postmenopausal by 42. I had not taken prednisone to this point. My RD said that often happens with RA and she had seen 18 year olds who were post menopausal who had RA. Marge – Hide quoted text — Show quoted text – GUYS: Warning, this thread will discuss PMS and menstruation.  Just thought I’d announce it cause I knew you guys would peek.  Did I scare you?  What if I throw in menopause? LADIES: I have always had very regular, set your watch by it, menstrual cycles. Now I don’t.  Sometimes I’m late, sometimes I’m early.  Lately its been every 21 days. YUK!!!!  Between PMS, MS, and ovulation, I don’t get my one good week out of the month.  Have had reg. gyn workups.  Nothing there.  Is this part of RA? Do not tell me I am menopausal.  I am too young for hot flashes. (although, the end of the monthlies is appealing). Sarah L "The problem with people who have no vices is that generally you can be pretty sure they