Have had RA for a year and a half, tried methotrexate, Arava, prednisone, and just recently Humira, My Rheumatologist sent me for a TB test before I started the Humira, I tested positive, from a childhood injection, so went to the TB clinic they put me on Isoniazid 300mg, have been on them for six weeks, have had two shots of Humira, went for my monthly blood test three weeks ago, my liver enzyemes were over 400, normally they read 30, so the TB doctor and my Rheumy told me to stop taking everything, I have been going for weekly blood tests and my liver enzyemes are still very high, I am suffering from pains in my back in my kidney area and feel exhausted, my GP doesn't know what to do, and the TB doctor just keeps telling me to wait that the liver will get better, I see my Rheumatologist next Monday, I am just so scared of liver damage. Any advice would be greatly appreciated.
My liver enzymes have never been normal or stable and fluctuate from month to month. My rhuemy said that he could not and would not help me until I saw a gastroenterologist and had a liver biopsy and cleared me. So I did. At the time i was carring 40 extra pounds and diagnosed with fatty liver desease. My rhuemy put me on any and all meds to control the arthritis. I lost that 40 pounds as recommended and it hasn't changed a bit with the flucuations, His new answer is "It's just how you are I guess" I suffered for 2 years waiting to get the appt with the gastro and the biopsy for no reason. But I would suggest you seek out a gastro and see if he/she can give you some answers.
I have experienced and currently going through a similar issue. Minus the TB history.
Enbrell stopped working for me after 6 yrs. Shortly after being put on Humira, all my blood work started going through the roof but my RBC was dropping. I was taken off everything except prednisone and told to wait until everything evened out. I was sent to a oncologist to check for signs of liver cancer, was send to a hemotologist to get my RBC to come back up and get his "opinion" of everything.
2 years later, my dear, i have no answers. I have even been in an out of the hospital because my RBC dropped to 4 (normal is 17 for my age) and given blood transfusions. After everything and waiting and waiting, the bloodwork is still all the same except I managed to pump my RBC up to an 8, with OTC iron pills and spinach woohoo.
In the meantime, I have had to endure a continuous flare up and the docs won't even give me pain meds. (can you say suicidal)
Last week i was finally put back on Arava, my prednisone increased yet again, and I am waiting for Simponi (insurance mess). The docs finally just said, "Well, it looks like nothing is going to change."
If you are concerned about your liver function, get a referral to a specialist and get checked out. Don't wait until you have had to lose mobility and function waiting for the doctors to wait. Be your own advocate and nip it in the bud.
Keep us informed, Sylvia. Good luck.
Ronie
I don't have the sane problem despite some of the same drugs; I never have had a liver issue. But I do know that you shouldn't just wait but be your own advocate. Wait and see what they say Monday and try not to think to much about the bad but then come away with a plan not more waiting.
The one thing I have learned in 14 yrs of dealing with all sorts of issues is that most of them have a solution of sorts. I don't always like the solution but I have adjusted with each new problem and learn to deal with the bad ones. I am learning to just remember that most problems have a workable solution and to not start climbing the moutain until I actually get to it.
thank you for your advice, my daughter basically said the same things to me last night, about being my own advocate, I just turned 65 and it seems like my health has deteriorated since I was diagnosed with the RA just over a year ago, I have always been a healthy person besides having Asthma, which is under control for years, and have seldom even needed to go to a doctor.
So being sick, having pains and awful fatigue is very new to me, so I don't even know what to ask the doctors, I am not familar with medications and just trust the doctors when they prescribe something for me, that's why I was so shocked
when I got this liver problem.
Anyway I do have a plan when I see the doctor on Monday and I will demand answers to my problem.
Thanks again
Go in with a piece of paper with questions and make sure you get an answer you understand. I have learned to be persistent with some of my docs. They give a quick reply that is suppose to reassure us that they know what is best but than I get home and I realize I don't have a clue what they said. Sometimes it helps to do some research and know the words and lingo before you go in so when they start talking doctor speak you understand them.
I have learned that if I am with them and I didn't bring the paper I will ask them for a piece of paper and I write down the major words of what they are saying. This way I can go home read some about it and be better able to discuss it at the next appointment.
I have an eye problem and ended up with a different doc the other day. I think he was trying to impress me because he keep using words I had never heard before. I asked for a piece of paper and than said please spell those words for me. He did. I came home looked them up and now I have a better idea of what he was trying to say
Thanks, what a good idea, I am already writing down what questions I will ask the Doctor next Monday, Unfortunately I guess it's because I am off all the meds now, but I have pains and aches all over, my stomach is so bloated and I have bad pain in the liver area, so I will have lot's of questions to ask.
thanks again
HI,
Just read your note. I have had RA for 5 years, muy Dr wanted me to go on Humira, but I checked and found one of the side effects is TB, which like you I check positive for. I researched and found RITUXAN, it is an infusion that when taken with MTX seems to work for 6 to 8 months at a time. You take 2 rounds 2 weeks a part. I have done it twice. My Alt is still pretty low....hope this helps
Charlie
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Thank you both for your replys, although I sympathize with you both for your problems, I'm glad I am not the only one with this liver problem.
I will be seeing my Rheumy next Monday and I will insist that I see a specalist, unless she can give me some concrete answers, not just let's wait and see!!
thanks again
PS I am still on prednisone, but in pain from the RA