I have recently been diagnosed with lupus after having a pulminary embolism. I am on blood thinners and lupus meds (Imunosuppressents), and I am having a really hard time.. I have pain everywhere from my head litterally to my feet. I can barely walk most times, and I hurt to the touch.. My remo doctor says it may be Fybromyalga and gave a script for roids but thats not what I want to take.. I finally got some pain meds from her Darvocet, and that doesnt help at all.. Please help if anyone has any ideas on how to treat the pain I would appreciate it.
The Dr's say I cant come off the blood thinners cause I would surely not make it through another Embolism.. I cant take antiinflamitories because of the blood meds.. Please help...
I have recently been diagnosed with lupus after having a pulminary embolism. I am on blood thinners and lupus meds (Imunosuppressents), and I am having a really hard time.. I have pain everywhere from my head litterally to my feet. I can barely walk most times, and I hurt to the touch.. My remo doctor says it may be Fybromyalga and gave a script for roids but thats not what I want to take.. I finally got some pain meds from her Darvocet, and that doesnt help at all.. Please help if anyone has any ideas on how to treat the pain I would appreciate it.
The Dr's say I cant come off the blood thinners cause I would surely not make it through another Embolism.. I cant take antiinflamitories because of the blood meds.. Please help...
Also a side effect of coumadin, is terrible joint ache. When I very first started taking coumadin I ached so bad, it isn't as bad now but I do still ache. The Dr. did give me something to take for the achey joints but it didn't help.
My Dr. told me that with warfarin chances of achey joints are more than coumadin, you still get achey joints with coumadin but a little less, then he told me I could give myself shots in the stomach & there would still be a possiblilty of achey joints. I said never mind, I'll just deal with it!
Thanks everyone.. Thanks for the response.. I went to the Dr. yesterday and she says I have Fybromialgia along with lupus.. I am so tired of this stuff.. I sometimes wonder if I really am as sick as I feel or if its all the meds I am on.. Even with the symptoms and the Dr telling me that I have these things I still wonder if I have Lupus or if the tests and Dr's are wrong.. Any advise?
I totally understand what you mean. I was hospitalized for two weeks after finding 2 PE (pulmonary embolism) in my lungs. The clots, I was told, were not due to lupus (Factor 5 defiency blood disorder) but it did help in diagnosing that I have lupus as well.
The doctors were so puzzled because prior to the PE, I've never been hospitalize/don't have kids/don't drink or smoke/not on birth control/never had surgery/26 yrs old. Initally I thought they diagnosed lupus just to give a name to something that they had no clue of explaining.
Most of the time during flares I prefer not to move or really talk because it hurts to move & too tiring to talk.
My Dr. also stressed that it would not be possible for me to stop taking Coumadin & that I’m likely to be on it for the rest of my life. Being on plaquenil for lupus & Coumadin for the factor V disorder makes it tough to determine, on the days of a flare, which is having an effect on what.
This may seem odd but I’ve found that rest mixed with the right amount of exercise can help subside the pain/soreness (I know, how can you exercise if you can't move?). Once you get in the motion of being active, it gets "easier" to move (it may still be painful but not as much)
good luck & know that you're not alone in this!
-ResilientRed
Last edited by ResilientRed; 10-28-2009 at 11:43 AM.
I had a PE and 2 blood clots in my left artery in January then they put me on Coumadin now I either have all the horrible side effects of coumadin or they also think lupus, polymyalgia reumatica or rheumatoid atheritis they are also looking for cancer. I am literally in horrific pain a lot too. I was put on Norcos for two months now my GP thinks im faking it but my heamotologist oncologist doesnt --- but I have no meds now and am bedbound a lot. I hate it and now suffer depression as well as a result of all this. I have to keep hope and --- who knows.... but I know I have to stay strong till they figure this all out. I'm sorry you too are in pain. I wonder if its coumadin side effects or what but its strange we both may have an autoimmune disorder while on coumadin.
Quote:
Originally Posted by Bookkeeping73
I have recently been diagnosed with lupus after having a pulminary embolism. I am on blood thinners and lupus meds (Imunosuppressents), and I am having a really hard time.. I have pain everywhere from my head litterally to my feet. I can barely walk most times, and I hurt to the touch.. My remo doctor says it may be Fybromyalga and gave a script for roids but thats not what I want to take.. I finally got some pain meds from her Darvocet, and that doesnt help at all.. Please help if anyone has any ideas on how to treat the pain I would appreciate it.
The Dr's say I cant come off the blood thinners cause I would surely not make it through another Embolism.. I cant take antiinflamitories because of the blood meds.. Please help...
wow me too, but I have Common Variable Immunodeficieny. I had the embolism on March 24th and now the tests are revealling the clotting disorder and SLE. SLE explains so much of my pain its unbelievable.
so glad I found this board.
Well it's been some time since I posted that last post. A year almost.. Anyway, I too have Fybro Mialgia which is a very painful disorder, you may want to ask your rumy about that.. My Lupus seems to be okay for now, and the blood thinner hasn't rellly caused me too many problems. I am really sorry to hear about this though, when there are medications that can help with the pain that don't knock you on your a**.. Like Tramadol, thats what I take 50mg 2 times daily and it helps a lot. It generic for Ultram.. Ask about this to, did they take any ANA tests to determine whether it was Lupus or not?
No i am still to sick my hematologist says with the PE, I also have an Immunodefiency called CVID and get IVIG for this every 21 DAYS in hospital. I did get a postitive result yesterday for The antiphospholipid syndrome, the lupus is 95% but not for sure yet
The hemotologist said things have to settle before we can do more testing?? ANA possilbly
I am taking "lyrica" and "toradol" "tylenol #4" nothing helps. My hematologist said that the ANA is not going to be accurate at this time as I am still so sick from the pulmonary embolism, they can not seem to get my INR under control. I also have (as they have found antiphospholipid syndrome, and have been on IVIG for 6 years due to CVID common variable immunodeficiency). I have huge problems with my GI and can only tolerate liquid diet which is not helping requlate the coumidin.
The Dr. has told me that it is 95% +ve for lupus, as i am +rvvt and +ve antiphospholipid with PE, with clinical problems, GI, joints, etc...
Help anyone??
Waiting to get to the Lupus clinic in Toronto, Canada
Lupus & Coumadin? What a combo.. 
Please help if anyone has any ideas on how to treat the pain I would appreciate it. 
