Rheumatoid arthritis unresponsive to Methotrexate
Posted , 8 users are following.
Hello,
I am a 29 year old married mother of 1 8 year old boy. I have been sick for almost two years. Intense fatigue, agonizing joint pain, general consistant feeling of malaise etc. seven months ago I was diagnosed with seronegative R.A due to visable damage and inflammation on bone scan, consistently high inflammatory markers (CRP and ESR) and visable swelling/redness. I also have sporadically gotten a malar rash and had a positive speckled ANA test (suggesting lupus) but the Rheumatologist wanted to focus on the R.A.
I started methotrexate seven months ago and have experienced five weeks of lung infections, RIDICULOUS amount of hair loss, fatigue, nausea and up and down LFT's etc. but i "stuck it out" and kept hoping for the best.
After two months of agony without a single pain free day - culminating in having to begin prescription painkillers in order to WALK because my ankles left me totally immobilised for two days, I went to see my rheumy. She said my LFT's were 4 times what the highest "ok" limit was, she said all my inflammation markers are extremely elevated, and it was obvious by the two months of suffering that the mthotrexate has not had any positive effects.
She told me I have "failed methotrexate" and am not allowed to take it ever again. She said (due to our healthcare system here) she is obligated to put me on Plaquinil and she fully anticipates me failing it - but its something we have to do before the government will fund biologics. I cannot even start plaquinil until my liver tests calm down (not sure how long this is expected to take? but have to have weekly blood tests to keep checking) In the meantime my rheumy has confirmed the beginning of an ulnar drift in my right hand and my right pinkie has already deformed in two joints and looks awful. My doctor advised me to plan to start with six months off work and she gave me a medical certificate to support this.
I just dont understand this at all - can someone VERY HONESTLY and "without any bulls**t" put it to me straight, what this means? I really REALLY need it clarified. Is my R.A severe? Am I in a dismal category. What kind of a future can i expect? Where do I go from here?
My quality of life is crappy at the moment but i have a positive attitude and I just want to know where I stand so I can work within the realms of what I am capable of and what I can expect for the future.
I do not want wishy washy messages of hope and stuff I really just want to understand this completely so I can fight it from the most effective standpoint.
thanks for ANY insight anyone is able to provide.
0 likes, 20 replies
Gloria814 melissasmith
Posted
I think MTX was given for so long and not proven to work. You need to start one of the other drugs mentioned. Dont know if prednisone short term was tried for you
It is awful that insurance coverage takes so long to get approval. Your doc needs to speed up the process so you can get on a biologic.!!
I have read 2 drugs together could work better than just one alone but I know you have to wait for liver function tests to return to normal
It's great you say you have a postive attitude. I admire that so much --I know you didn't want any platitudes but hang in there and God Bless. I am hoping the next med works for you and quickly Try and read up on diagnosis, treatment, diet etc when and if you feel up to it. It has helped me communicate better with the doctor and he has listened to me--made all the difference --so far anyway
All the best!
melissasmith Gloria814
Posted
Hi Gloria, I am currently on prednisone, it has made moving around a bit easier and gotton rid of the HORRENDOUS flare i had in my ankles but the rest of the pain is still there and the fatigue is intense.
I hope my doctor gets things sorted quickly now, or even that plaquinil WORKS by some miracle chance.
I try really hard to stay positive and to soak up all the "little things" and small victories in everyday life and tht helps alot. RA is so overwhelming, i cannot imagine where I would be without a positive attitude and a bit of hope.
I feel like ive read every article there is in the stratosphere about RA and im still getting no where.
thanks for your kind response. xo
sherry29159 melissasmith
Posted
Like you methotrexate doesn't work anymore and I seem to live on prednisone which does help with pain but is causing havoc with my bones. Its a vicious circle. Drugs that help with one thing cause other problems. Its a never ending nightmare I feel. I am going through severe depression with it all right now. Ironically I cannot take antidepressants as they interfere with the drugs I am on.