Question:

Yes to the baby aspirin……I have anticardiolipids in my blood and the first thing the specialists did was put me on 1 baby aspirin a day even though I bruise easily.  Now with a heart doc they recommend 2 baby asa a day. I am also on estrogen patch and there is a risk but with estrogen it is necessary to help prevent bone loss also….. Hope it helps..Janers

Response:

Thanks, I thought the baby aspirin made sense. I have to take estrogen for my osteoporosis (allergic to Fosamax- getting allergic to most everything anymore).  It seems that the elevated anticardiolipin and estrogen replacement is not a good combination.   You ladies are great and I truly  appreciate the "teaching" and support. Thank You!

Response:

Megan~~Hi! It’s Kim.  What or how did you know you were allergic to Fosomax?  My rheumatologist, my appt. is Tuesday, is talking about putting me on this.  I use the estrogen patch, but with being on prednisone so long now, I am worried about osteoporosis, too.  It’s so confusing with all the over the counter stuff, and the adds on TV.  Thanks for helping—-Kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

Hi, Kim.  Let me precede my experience with the comment that I was TOLD that an allergic reaction to Fosamax is extremely rare.  Also, my wonderful pharmacist said I should report any allergic reaction as Fosamax is still in the early stages of use.  I’ve got enough problems without reporting something like that and then being contacted by a major pharmaceutical company – no thanks!  Coward, yes I am<grin

Anyway, the first week of taking Fosamax I started feeling not quite right and getting worse each day – noticed the getting worse happened about 2 hrs. after taking the Fosamax (later learned 2 hrs. is the prime absorption time for Fosamax).  So, I called and talked to the nurse at my docs office.  She said try stopping the Fosamax for a week.  I did and slowly felt better.  Then, she said start taking it again.  Oh, Boy, within a couple days itching, hives, throat closing up – the whole 9 yards!  Stopped Fosamax and gradually the symptoms went away.  My doc said I had "classic" drug allergic reaction. You might try posting to the osteoporosis ng.  There are some really knowledgeable people there who have had positive experiences.  Most everyone on that ng keeps a close eye on the meds for osteoporosis. After my bone density showed such severe osteoporosis, I did a LOT of research on treatment.  I now have mixed feelings.  The Neuro/Pain Specialist I’ve been talking about (very smart man affiliated with Oregon Health Sciences University Research Hospital) told me recently that Calcitonin (aka Miacalcin) thickens the bone but at the expense of good architecture.  So, might be a med to reconsider. It was agreed I should increase my Calcium (Calcium Citrate is supposed to be the best one to take as it is more readily absorbd) daily intake to 1500 mg. with 800 IUs of Vitamin D per day – VERY important especially for those of us who try to stay out of the sun. Hope this helps.  If you have any other questions, let me know.  Good Luck and please let me know what happens.

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(1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance?

There are quite a few doctors yet who are unfamiliar with APLS and may not realize the risks of putting a woman with it on estrgen replacement therapy. When my daughter’s tests came back positive for both IgM and IgG, we were told she shouldn’t ever take estrogen or birth control pills due to the increased risk of clotting. Sandra

Response:

<<  My rheumatologist, my appt. is Tuesday, is talking about putting me on this [Fosamax].  I use the estrogen patch, but with being on prednisone so long now, I am worried about osteoporosis, too.  It’s so confusing with all the over the counter stuff, and the adds on TV.

Fosamax is one of many ways of treating or preventing osteopenia and osteoporosis.  The doctors at NIH in Bethesda, MD, say they commonly give it to patients on a once a week basis as it’s much easier for them to tolerate it that way.  Taken daily, it can sometimes be kind of hard on the stomach.   If Fosamax doesn’t work out, there are still a wide variety of options.  My daughter takes Miacalcin for her Prednisone induced osteopenia.  Fosamax was the first choice for her, but because of her very sensitive stomach, we went with the slightly less desireable (so far as the benefits go) Miacalcin.   BTW, for the person who has severe osteoporosis, you might be interested to know that John Hopkins in Baltimore, MD, has been doing extensive research on severe osteoporosis.  Right now they have a new treatment for preventing fractures in the spine.  They have a new substance they inject into the bones of the spine in order to strengthen it.  So far, according to what I’ve read of this procedure, the results have been very promising and they’ve had substantially fewer spinal fractures in their patients with severe osteoporisis.   Sandra

Response:

I am definitely overwhelmed in trying to put everything together I want to present to the new doctor.  Thus, I suspect, is the cause of my mind functioning at a lower capacity. I have a couple more questions: (1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance? 2)  Regarding retinal vein occlusion (not diagnosed but I’m not getting what I’m reading in my searches) is that something that would normally be seen during an eye exam or is it something that is specifically tested for looked for in particular?  I have experienced with medical specialists that they only look for what I have been referred for and no further. Thank you everyone so much for your help and support.  This is a very stressful and scary time for me as I see the puzzle pieces coming together after all these years.  I don’t know why the doctors couldn’t see it and blamed everything on Fibromyalgia and just brushed off the blood tests as "insignificant." Thanks ever so much.

Response:

On Thu, 20 Jul 2000 11:19:52 -0700 (PDT), Mega…@webtv.net wrote:

I am definitely overwhelmed in trying to put everything together I want to present to the new doctor.  Thus, I suspect, is the cause of my mind functioning at a lower capacity. I have a couple more questions: (1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance?

My understanding is "yes" to the second part of this question.  I don’t know about the first but a baby aspirin is commonly prescribed to control "sticky blood" of APLS.

Thank you everyone so much for your help and support.  This is a very stressful and scary time for me as I see the puzzle pieces coming together after all these years.  I don’t know why the doctors couldn’t see it and blamed everything on Fibromyalgia and just brushed off the blood tests as "insignificant."

Because they have little boxes with labels on them – one box says "lupus", another says "arthritis", another says "FMS" and so on.  The FMS box is bigger than the others – that is, they can lump more symptoms into that one box because they don’t have so many "restrictions" on what constitutes a diagnosis of FMS vs. lupus or other illnesses.  Finally, the biggest box of all is the "Just Stressed/Depressed" box.  It is huge and all the symptoms in the world can be tossed into that box from what I’ve seen. Do I sound cynical? I don’t have an answer for the second question at all… Best wishes KCat – Hide quoted text — Show quoted text -

Thanks ever so much.

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