Question:
I agree with Paul here, too. Steroids are pretty brutal. I’m not afraid of them, I’ve had several steroid treatments, but reserved for optic neuritis only. For me, steroids work quickly on that front. But in any event, they don’t change the "course of the disease." They can, however, change the course of the exacerbation — maybe. Good luck.
Dagal23 wrote: " EXACTLY!!! Now this makes it much easier. I don’t want
to take the steroids if they aren’t going to do anything to help in the course of the disease. It sort of reminds me of my situation with Neurontin. My doc wanted me to take it for nerve pain. Started taking it and lost my sense of balance pretty badly. Doc said to keep taking it that I’d get used to it. I did. I got my sense of balance back. After a few weeks I started having blinding headaches. Doc said it’s a side effect of the Neurontin and wanted to prescribe something for the headaches. I told him to forget it, I’d deal with the nerve pain." <
Response:
Paul, Do you have any studies or info on the long term effects of low dose oral steroids. I used them on and off for over 8 years….when they tried iv solumedrol, i went to sleep, had worse steroidal acne(that a nurse actually told me to put cortisone cream on…..loser) and basically no benefits from them whatso ever. I hypothesize….8 years of continued low dose steroids have made me immune to the possible good effects of steroids. make any sense? I also attribute rapid weight loss to the discontinuing of steroids. After totally quitting in Dec 2000, by July 2000 I was back to pre pregnancy weight of 120-125….I have no explanation for this other than the fact I quit steroids and my body has adjusted to it’s normal weight. Being 5ft 5inches tall, 120-125 is a perfect weight according to the weight Vs height frame size calculations. — Take Care : ) JulieD We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some need to hold a sign some have weird names, and all are different colors…. but they all have to learn to live in the same box. "Paul Jones" <Paul_Jo…@btinternet.com
wrote in message
news:3B5FE7AF.FBCB6FF@btinternet.com…
Hi Tee, Long-term use of corticosteroids isn’t good. Why? You PPMS right? I didn’t think corticosteroids were appropriate for any phase of MS except relapses during the RRMS phase. I would ask your neuro some serious questions if you’re taking them for MS. From:
http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsglucocorti… 2018.html#SXX20 – Hide quoted text — Show quoted text -
Side Effects of This Medicine Corticosteroids may lower your resistance to infections. Also, any infection you get may be harder to treat. Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing. Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. When this medicine is used for short periods of time, side effects usually are rare. However, check with your doctor as soon as possible if any of the following side effects occur: Less common Decreased or blurred vision; frequent urination; increased thirst Rare Blindness (sudden, when injected in the head or neck area); burning, numbness, pain, or tingling at or near place of injection; confusion; excitement; false sense of well-being; hallucinations (seeing, hearing, or feeling things that are not there); mental depression; mistaken feelings of self-importance or being mistreated; mood swings (sudden and wide); redness, swelling, or other sign of allergy or infection at place of injection; restlessness; skin rash or hives Additional side effects may occur if you take this medicine for a long time. Check with your doctor if any of the following side effects occur: Abdominal or stomach pain or burning (continuing); acne; bloody or black, tarry stools; changes in vision; eye pain; filling or rounding out of the face; headache; irregular heartbeat; menstrual problems; muscle cramps or pain; muscle weakness; nausea; pain in arms, back, hips, legs, ribs, or shoulders; pitting, scarring, or depression of skin at place of injection; reddish purple lines on arms, face, groin, legs, or trunk; redness of eyes; sensitivity of eyes to light; stunting of growth (in children); swelling of feet or lower legs; tearing of eyes; thin, shiny skin; trouble in sleeping; unusual bruising; unusual increase in hair growth; unusual tiredness or weakness; vomiting; weight gain (rapid); wounds that will not heal Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: More common Increased appetite; indigestion; loss of appetite (for triamcinolone only); nervousness or restlessness Less common or rare Darkening or lightening of skin color; dizziness or lightheadedness; flushing of face or cheeks; hiccups; increased joint pain (after injection into a joint); increased sweating; nosebleeds (after injection into the nose); sensation of spinning After you stop using this medicine, your body may need time to adjust . The length of time this takes depends on the amount of medicine you were using and how long you used it. If you have taken large doses of this medicine for a long time, your body may need one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur : Abdominal, stomach, or back pain; dizziness; fainting; fever; loss of appetite (continuing); muscle or joint pain; nausea; reappearance of disease symptoms; shortness of breath; unexplained headaches (frequent or continuing); unusual tiredness or weakness; vomiting; weight loss (rapid) Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. Revised: 06/27/2000 ——————– Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/ Tee wrote: Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid
use?
I’m on a 1gm monthly dose of IV Solumedrol. Paul said that Ed has a
list… > > can you post it, Ed? > > Thanks! :o) > > Hugs, > > Tee > > "Michael" <muirh…@island.net
wrote in message
> > news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… > > "Dagal23" <daga…@aol.com
wrote in message
> > news:20010725223712.22291.00001124@ng-ms1.aol.com… > > > I’ve been having problems with my left forearm. I feel like I’ve hit my
funnybone, but not the immediate feeling you get when you do it, but
that
lingering feeling of having bumped it. Sort of numb-ish, or like the nerve is irritated or something. I just can’t explain it. Hiya Sue… Whatcha got there is a paraesthesia. Changed sensation, possibly
secondary
to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it
was
as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin. I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in
eliminating
other possible causes for the problem (peripheral neuropathy from diabetes can
do
this, for example,) but even if it’s new MS activity, I’d be very
hesitant
to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and
they
do nothing to change the outcome of MS exacerbations. They *can* speed
them
along some. This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life. Sorta like firing a cannon
across
your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? — ((((((((((U)))))))))) Michael <muirh…@island.net -=| Livin’ on Island Time |=-
Response:
Sue, hi. I agree with all the others re the steroids. What you’re feeling doesn’t necessarily have to do with a current exacerbation, tho. For about the past 10 or so years, I’ve had a sensation like what you’re describing, and it’s all the time. Left over from my flare in 91, I imagine. I call it "feeling like I have paraffin all over me". Tingly but kind of numb. I can feel it if you stick me with a pin, but don’t hand me something and expect me to be able to tell you whether it’s velvet or sandpaper. It drives you crazy at first, but eventually, eventually, eventually, you get used to it! Shirl "Dagal23" <daga…@aol.com
wrote in message
news:20010725223712.22291.00001124@ng-ms1.aol.com… – Hide quoted text — Show quoted text -
I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the
nerve is
irritated or something. I just can’t explain it. I first had the feeling
a
couple of months ago, it lasted a couple of days, went away, came back for
a
couple of days, and now I’ve had it for several days now. Should I call
my
doctor? I don’t know what I’m supposed to be doing. Even if I call my
doctor,
would it accomplish anything since I’m on Copaxone anyway? I’ve read
where
steroids can help exaserbations, but not knowing if it’s an exaserbation
has me
in a quandry. If it is, and he wants to put me on steroids, does it
actually
help the course of the disease or does it just help the symptoms? Sue
Response:
Hi Sue! << I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry. If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms?
This "funnybone" type feeling in your forearm doesn’t sound like an attack; it just sound like the MS acting up a bit. I don’t use steroids unless I’m getting to the point where I can’t transfer. They’re pretty nasty, as others have told you, but they always pull me out of an attack. But everyone is different; some people are not helped at all. And they don’t help with the course of the disease; that’s what Copaxone is supposed to do. I have lots of MS symptoms like this that come and go. This sounds like one of mine. Just part of the fun MS experience! Take care! Sylvia
Response:
This "funnybone" type feeling in your forearm doesn’t sound like an attack; it just sound like the MS acting up a bit.
Well now I’m having buzzing sensations in the roof of my mouth, near the back on the left side and in the front directly behind my two front teeth. I wonder if at any moment I will just have a complete meltdown. Sorry to bitch about this, and I feel kind of silly considering many of you have much more serious problems with MS than I do, but I just hate this. I think I’m mostly scared. Sue
Response:
dont feel silly sue. when your body is pulling a "freak show" on you as i call it, it is terrifying. you never know what is coming next. breathe deep. get a lot of rest. if it keeps up, call the doc.
Sorry to bitch about this, and I feel kind of silly considering many of you have much more serious problems with MS than I do, but I just hate this. I think I’m mostly scared. Sue
Be Well, Lisa to send email, remove 123 from my address. "Please explain to me the scientific nature of ‘The Whammy’" – Scully "The Daily News asks her for the dope. She says, ‘Man, the dope’s that there’s still hope.’"- Springsteen
Response:
Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid use? I’m on a 1gm monthly dose of IV Solumedrol. Paul said that Ed has a list… can you post it, Ed? Thanks! :o) Hugs, Tee "Michael" <muirh…@island.net
wrote in message
news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… "Dagal23" <daga…@aol.com
wrote in message
news:20010725223712.22291.00001124@ng-ms1.aol.com…
I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the
nerve is
irritated or something. I just can’t explain it.
Hiya Sue… Whatcha got there is a paraesthesia. Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin. I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations. They *can* speed them along some. This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life. Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? — ((((((((((U)))))))))) Michael <muirh…@island.net
-=| Livin’ on Island Time |=-
Response:
Hi Tee, Long-term use of corticosteroids isn’t good. Why? You PPMS right? I didn’t think corticosteroids were appropriate for any phase of MS except relapses during the RRMS phase. I would ask your neuro some serious questions if you’re taking them for MS. From: http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsglucocorti… Side Effects of This Medicine Corticosteroids may lower your resistance to infections. Also, any infection you get may be harder to treat. Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing. Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. When this medicine is used for short periods of time, side effects usually are rare. However, check with your doctor as soon as possible if any of the following side effects occur: Less common Decreased or blurred vision; frequent urination; increased thirst Rare Blindness (sudden, when injected in the head or neck area); burning, numbness, pain, or tingling at or near place of injection; confusion; excitement; false sense of well-being; hallucinations (seeing, hearing, or feeling things that are not there); mental depression; mistaken feelings of self-importance or being mistreated; mood swings (sudden and wide); redness, swelling, or other sign of allergy or infection at place of injection; restlessness; skin rash or hives Additional side effects may occur if you take this medicine for a long time. Check with your doctor if any of the following side effects occur: Abdominal or stomach pain or burning (continuing); acne; bloody or black, tarry stools; changes in vision; eye pain; filling or rounding out of the face; headache; irregular heartbeat; menstrual problems; muscle cramps or pain; muscle weakness; nausea; pain in arms, back, hips, legs, ribs, or shoulders; pitting, scarring, or depression of skin at place of injection; reddish purple lines on arms, face, groin, legs, or trunk; redness of eyes; sensitivity of eyes to light; stunting of growth (in children); swelling of feet or lower legs; tearing of eyes; thin, shiny skin; trouble in sleeping; unusual bruising; unusual increase in hair growth; unusual tiredness or weakness; vomiting; weight gain (rapid); wounds that will not heal Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: More common Increased appetite; indigestion; loss of appetite (for triamcinolone only); nervousness or restlessness Less common or rare Darkening or lightening of skin color; dizziness or lightheadedness; flushing of face or cheeks; hiccups; increased joint pain (after injection into a joint); increased sweating; nosebleeds (after injection into the nose); sensation of spinning After you stop using this medicine, your body may need time to adjust . The length of time this takes depends on the amount of medicine you were using and how long you used it. If you have taken large doses of this medicine for a long time, your body may need one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur : Abdominal, stomach, or back pain; dizziness; fainting; fever; loss of appetite (continuing); muscle or joint pain; nausea; reappearance of disease symptoms; shortness of breath; unexplained headaches (frequent or continuing); unusual tiredness or weakness; vomiting; weight loss (rapid) Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. Revised: 06/27/2000 ——————– Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/ – Hide quoted text — Show quoted text -Tee wrote:
Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid use? I’m on a 1gm monthly dose of IV Solumedrol. Paul said that Ed has a list… can you post it, Ed? Thanks! :o) Hugs, Tee "Michael" <muirh…@island.net wrote in message news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… "Dagal23" <daga…@aol.com wrote in message news:20010725223712.22291.00001124@ng-ms1.aol.com… I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the nerve is irritated or something. I just can’t explain it. Hiya Sue… Whatcha got there is a paraesthesia. Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin. I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations. They *can* speed them along some. This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life. Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? — ((((((((((U)))))))))) Michael <muirh…@island.net -=| Livin’ on Island Time |=-
Response:
"Dagal23" <daga…@aol.com
wrote in message
news:20010725223712.22291.00001124@ng-ms1.aol.com…
I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the nerve is irritated or something. I just can’t explain it.
Hiya Sue… Whatcha got there is a paraesthesia. Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin. I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations. They *can* speed them along some. This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life. Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? — ((((((((((U)))))))))) Michael <muirh…@island.net
-=| Livin’ on Island Time |=-
Response:
Dagal23 wrote:
I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the nerve is irritated or something. I just can’t explain it. I first had the feeling a couple of months ago, it lasted a couple of days, went away, came back for a couple of days, and now I’ve had it for several days now. Should I call my doctor? I don’t know what I’m supposed to be doing. Even if I call my doctor, would it accomplish anything since I’m on Copaxone anyway? I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry. If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms? Sue
I’m not a doctor but … I’d think hard about steroids if I were you. They have pretty nasty side-effects (psychological effects, weight gain and lots more – check with Ed for the full list). Studies have shown that they don’t make any difference to the disease course in the long-term. They do shorten exacerbations but that might be only a matter of a few weeks difference before you recover that amount anyway. If you can live with this elbow stuff (sounds like something called paraethesia – altered sensation) then I would if I were you. If it doesn’t get better then the likelihood is that it wouldn’t have anyway. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/
Response:
I’d think hard about steroids if I were you. They have pretty nasty side-effects (psychological effects, weight gain and lots more – check with Ed for the full list). Studies have shown that they don’t make any difference to the disease course in the long-term.
EXACTLY!!! Now this makes it much easier. I don’t want to take the steroids if they aren’t going to do anything to help in the course of the disease. It sort of reminds me of my situation with Neurontin. My doc wanted me to take it for nerve pain. Started taking it and lost my sense of balance pretty badly. Doc said to keep taking it that I’d get used to it. I did. I got my sense of balance back. After a few weeks I started having blinding headaches. Doc said it’s a side effect of the Neurontin and wanted to prescribe something for the headaches. I told him to forget it, I’d deal with the nerve pain. Sue
Response:
I’ve been having problems with my left forearm. I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it. Sort of numb-ish, or like the nerve is irritated or something. I just can’t explain it. I first had the feeling a couple of months ago, it lasted a couple of days, went away, came back for a couple of days, and now I’ve had it for several days now. Should I call my doctor? I don’t know what I’m supposed to be doing. Even if I call my doctor, would it accomplish anything since I’m on Copaxone anyway? I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry. If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms? Sue
Response: