Meds

[GraceEllie2012]

I could use some advice on medications for APS. When I was first diagnosed, I was started on baby aspirin. Then, lovenox and baby aspirin during my pregnancy. A couple months after my daughter was born, I was switched to warfarin. However, I did not respond well to it and was never able to get stable on it, despite watching my diet, taking at the same time every day, etc. Even on 12mg to 15mg, my INR was often only 1.6 or so. Then, when it did finally go up (which was rare), it went way up to around 5 or 6. During this time, I felt terrible. I was having all kinds of symptoms and just felt hopeless and awful. The doctor switched me to Clexane injections since the warfarin wasn't working and I felt much better then. I also changed my diet quite a bit which also helped. Well, now my doctor says he doesn't want me on clexane injections any longer because my hair is falling out (I have bald patches, which is pretty upsetting), which is apparently a known side effect, and he says that two years on it is already too long because of the risk of osteoporosis. He prescribed xerelto since warfarin wasn't working well. After doing some research...I'm afraid to take it. I haven't had a blood clot before, but I had three miscarriages and my antibodies are in the very very high positive range. I know that it isn't as much about the number of antibodies as whether you are positive for them or not, but even my hemotologist is concerned and at a loss for where my antibody numbers are at.

So, do any of you take xerelto? Any advice on that? Should I ask him to try warfarin again instead? Have any of you been on clexane/lovenox/enoxaparin injections for long term?

Thanks for your help.

[Hidden]

Hi

I have been on Clexane for three and a half years. I had a Dexa Bone Scan last year and my bones are back up stronger than averages again (I was just off the osteoporosis range a few years ago after being on steroids for years). Other than the fatty deposits where you repeatedly inject and a bit of bruising, I don't have any side effects on Clexane.

I ride horses and occasionally get injured so the doctors were reluctant to put me on the new anticoags - thankfully!!

I really disliked Warfarin, I couldn't keep it stable and had two massive internal bleeds - that was when i finally changed.

Please keep up updated and good luck.

Tx

[GraceEllie2012]

Tasch, thank you for your reply. May I ask, have you had any hair loss from the Clexane?

[Manofmendip]

Hi Grace

I was on Warfarin for 9 years and after seven of those years I started to get a return of my symptoms. So I was transferred onto Fragmin (Low Molecular Weight Heparin) and I have been on that for 2 years, with no issues so far. Prof Hughes tells me that LMWH Heparins such as Fragmin do not cause osteoporosis. I read one article that said that they actually protect against it.

As for hair loss, I have more hair than most 60+ men.

Best wishes.

Dave

[GraceEllie2012]

Thank you, Dave. I'm glad you haven't experienced the same hair loss problem that I have! I'm leaning towards maybe thinking it best to stay on Clexane, but I don't think my hematologist will be very supportive of that. He is very nice, but doesn't seem to know much about APS. I try to tell him about different pains and symptoms, but he says that APS "can't cause those symptoms". I know better. Does anyone know of a specialist in Germany, particularly in the Stuttgart area, that is well versed in APS?

[MaryF Administrator in reply to GraceEllie2012]

Hi here are some papers with names on in Germany, as a starting point, and they may know of expert care nearer to where you are: genericassays.com/index.php...

MaryF

[happee1 in reply to MaryF]

mary..i just wanted to tell you that you are so very helpful with the internet sites when we ask a question..thank you

[MaryF Administrator in reply to happee1]

Good! and thank you for taking the trouble to tell me that, myself and my other colleagues/ADMINS plus of course our regular members all strive to make this work for everybody, and it is genuinely appreciated, the positive feedback. We had also had some recently from other quarters which again is also great feedback! Have a lovely day. MaryF

[Salty]

hi Grace, Like you, warfarin was not nearly as effective for me as LMWH (heparin) at any INR and also like you my INR was very labile. I have been on LMWH for about 2.5 years. I also had a dexa scan that was fine. If I were you, I would definitely try the xarelto--not because of osteoporosis which is not felt to occur with LMWH (but did with the older heparin formulations), but because of the hair loss! Since you have a lot of APS symptoms, it should be easy to tell if it is effective. Really, it is just an oral formulation of clexane...they are both factor Xa inhibitors. Most of the APS patients I have heard about that have tried it due to lack of other good options like you have done well.

[GinaD]

OK. First my disclaimer. I am not a doctor. In fact, I was an English major in college.

So, take everything I say about a medical condition with a barrel of salt. And as I re-read this post before I hit "submit" I admit the following does not so much answer your question as provides a reason why I have not answered your question.

So mabe I should just hit "delete?"

Well, I've already written this so --

My theory? Given the wide vaiety of symnptoms and effective treatments found among us who use this site I believe that eventually Hughes Syndrome will be known as a close family of autoimmune reactions to this or that aspect of the clotting cascade.I arrrive at this theory due to the wide variety of symptom erxpression and effective treatments seen on this board.

The lucky among us get a fairly quick diagnosis and are matched with an effective medication quickly. Many of us, however, must suffer for years waiting for the right doctor to match symptoms with diagnosis. And many of us also must try 2 or more anticoagulants before we are matched with the med that works. Also, many of us see our symptoms change with time and must be switched from one drug to another.

This is why it is important to see a doctor who is knowledgable, and is therefore willing to be persistent, in treating Hughes.

As for your antibody question? I do wish I had access to an emoticon which depicts a profound shrug of the shoulders. My antibody levels fell when I accidentally tried a gluuten free diet, through my systemic inflammation persists. Others' numbers rise and fall without any discernable pattern or reason. Its often a mystery. Since Hughes can be paired with other autoimmune issues -- usually thyroid or Sjogrens -- antibody levels can only indirectly speak to the Hughes' activity.

Or maybe your bloods were drawn the day after a woman with the flu sneezed a few seconds before you wheeled your cart into her grocery aisle.

So good luck. Its rather stressful being the personal subject of a laboratory experiment to find out which med works for you. But many of us have been there, and done that.

One final note about the osteoporosis concern: My Grandfather taught me to prioritize risk: "You deal with the wolf at your throat before you even worry about the wolf at the door."

[happee1 in reply to GinaD]

gina i love this quote... "You deal with the wolf at your throat before you even worry about the wolf at the door."

i will be keeping that at the front of my mind..sorry i don't know how to do emotions but here is my happee face... :>)

[GinaD]

Thank you for the recommend. After years of wondering how to frame the novel I want some day to write, today while driving from the grocery with Coldplay on the IPod at a loud volume, I thought of a possible framework for this complicated narrative I yearn to tell. If it works out, you all will be the first to know.

[GraceEllie2012]

Thank you all for the responses. I really appreciate each and every one. My family was here visiting from the States the past two weeks, so that's why I hadn't responded sooner. I tried the Xarelto, but after only a week on it I was feeling miserable having headaches almost constantly and feeling sudden pains here and there. I went back to my trusty Clexane and am feeling better and more like myself again. I've heard that some people respond better to Coumadin than the generic Warfarin. Have any of you heard that? It's really no matter, I suppose, since I'm sure that my insurance wouldn't cover Coumadin anyway. But, I am always curious when I hear about these things.

[danaja]

I couldn't stabilize on warfarin but did on Coumadin. I was told that it releases more evenly into the bloodstream. I have fought the insurance companies and gained the right to remain on brand-name Coumadin.

[Lure2 in reply to danaja]

Well done! I like that. I send my admiration from Stockholm. Kerstin