Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hey RA Peeps!
I just got out of the hospital after being there 7 days. :(
I took my third shot of Humira Thursday week ago before bed. I woke up Friday morning with a high fever and non-stop dry heaving.Went to the ER could barely breath. After many tests the found blood clots on both lungs. But the cause of the fever was a mystery, so they called in an infectious disease specialist. He ran many more tests. Still a mystery!!!
Meanwhile they are giving me warfin to dissolve the clots. After looking at all of the tests they found a small benign tumor on my adrenal gland (which he said was of no consequence). They also found small gall stones which they said 65% of people have them and are never a bother, so mine should be fine for a long time. So now after finally getting rid of my infection and fever. They said they never found where the infection was or what was causing it. But the concluded that it was probaby caused by the Humira!
I have been off of all RA meds for 8 days now and the pain is creeping back slowly, I just hope I get back on something soon before it completely blows up! But I also discovered that MTX was causing all of my terrible fatigue, because since I have been off of it the fatigue COMPLETELY disappeared!! I will NOT be going back on MTX!! They are going to have to find something else!! Also will have to get a replacement for Humira!!
Any suggestions for MTX replacement?
Hope everyone is having a pain free weekend!
I just got out of the hospital after being there 7 days. :(
I took my third shot of Humira Thursday week ago before bed. I woke up Friday morning with a high fever and non-stop dry heaving.Went to the ER could barely breath. After many tests the found blood clots on both lungs. But the cause of the fever was a mystery, so they called in an infectious disease specialist. He ran many more tests. Still a mystery!!!
Meanwhile they are giving me warfin to dissolve the clots. After looking at all of the tests they found a small benign tumor on my adrenal gland (which he said was of no consequence). They also found small gall stones which they said 65% of people have them and are never a bother, so mine should be fine for a long time. So now after finally getting rid of my infection and fever. They said they never found where the infection was or what was causing it. But the concluded that it was probaby caused by the Humira!
I have been off of all RA meds for 8 days now and the pain is creeping back slowly, I just hope I get back on something soon before it completely blows up! But I also discovered that MTX was causing all of my terrible fatigue, because since I have been off of it the fatigue COMPLETELY disappeared!! I will NOT be going back on MTX!! They are going to have to find something else!! Also will have to get a replacement for Humira!!
Any suggestions for MTX replacement?
Hope everyone is having a pain free weekend!
My goodness, I can't believe what you went through. That could have killed you! I'm so glad you are OK. It is so scary how one medication can really do harm to one person and leave others unscathed.
I won't touch MTX either because I believe it is what shut down my kidneys (about 10 years ago). I can't take even small amounts of Prednisone either (just found out), as it drastically raises my blood pressure.
Well, I sure hope that whatever you do try next does not cause any such symptoms. Sending love and hugs your way. So sorry you were hospitalized over this.
Hugs
Have you tried plaquenel yet? Some people have good results with it. Minocin is another nonbiologic treatment to consider.
I am the one who gets to be the guinea pig. This sucks!!!
Glad to have you back with us!
Yes I did have a CT scan of my lungs that is how they found the blood clots.They also did an echocardiogram of my heart which was fine. But yes I still worry about my lungs. Thanks for the info.
I'd be calling the Humira hotline.
I'm betting they say don't take it. Of course they also say talk to your doctor so I could loose this bet.
I'm a chicken anyway so I'd probably say no way. You went through enough. Perhaps Sally's suggestion finding a lung doctor & explaining the urgency. That's a hard one.
Cimzia caused me to have problems breathing.
After the second injection even the wind took my breathe away.
So I stopped & am calling my doctor & informing her I like to breathe so the injection is not an option.
I am curious to see what Humira's nurse would recommend.
You have nothing to loose by getting that opinion.
Good luck & let us know how it goes.
Sammy
Good luck to you
I did take my Humira injection last night, I was afraid but so far no side effects :) Thanks for all of the encouragement!
I was admitted for 7 days four years ago while on MTX and the fever was 104 with pneumonia - as it crept towards 105 they got out that cooling blanket thing - and this was from ICU.
mo more MTX - i did no get that Boop de Boop diagnosis that buddha cat did but they suspected MTX
they also gave me huge doses of solumedrol simultaneous to taking me off MTX and all RA drugs. is there any chance the reason you feel you have no fatigue is continuing high steroids ? (the high steroids made me feel like I was on speed)
glad you are home
Depot