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.
Melisa I am so sorry to hear about the pain and results. I've been there so many times and right now I'm somewhat better. I have orencia infusions every 4 weeks. I also am on plaquinal and I take turmeric and msm. These help so much not sure about the Orencia. I am better but I truly think its due to the turmeric and man along with other bit and supplement. I also am on pain med and if I can go two days without it I'm happy. Good luck to you. You are too
Did they not ask you to do blood test at the beginning of you having to take methotrexate as one of the side effects is elevated liver function. The liver will go down within 3 to 4 weeks. Ones they hit the right medication you will feel better. If you go on biological a you will need to have a TB test first. If you are positive you will then need antibiotics for three months before you can have them. I have been off work since last November as my work want me to do physical work and won't let me stay in the office.
Methotrexate made my RA worse and ended up in A And E, for self help I suggest you try Turmeric 95% curcumin with piperine capsules, they definitely seem to help me, plenty of info online.
Ok- what you need is the chance to try a biologic. This made the world of difference to me and I m now virtually pain free , though experienced pain, fatigue and debility as you describe.
i think you must be in uk as I am . The NICE guidelines on management iof RA ( you can look them up)say we must have tried 2 DMARDS for 6 months and still have active disease, usually measured by a DAS score, for 2 months before they can apply for funding for a biologic.
i think your rheumy could have acted faster. NICE also suggest 2 DMARDS from the beginning.( DMARDS usually being methotrexate,sulfasalazine or plaquenil) Also it only needs 3 months to see if methotrexate is working. I hope you stopped mxt as soon as you got an infection? Make sure she doesn't hang about after you try next dmard. Ask her about trying 2 together( not mxt now of course) an adverse reaction to mxt doesn't mean the same will happen with other DMARDS. Ask her about fulfilling the conditions for biologic funding
Just as as an extra, while you are suffering, are you being given prednisolone? Either by a jab or tablets? They are not good for long term use, but really help the pain and inflammation while waiting for something else to work.
So sorry to hear your story but it is similar to mine in some ways. I am still on methotrexate and have been in terrible pain since 2011 when my breast cancer bought on RA. I have gone through all the usual RA drugs during this time without success and have lived on morphine and steroids to help pain. Finally I was told because I had failed to respond all the usual drugs I could be considered for a biological (very expensive) drug. Funding had to be applied for and the waiting for the answer as to whether it was accepted was just added stress and pain. Finally I got funding and have recently undertaken my first infusion of this new drug. It takes anywhere from 3 to 6 months to kick in for some and so far I have not had any good response. Now I am getting different pain which I believe could be nerve damage. This is being investigated. I wonder if this is due to years of not getting more efficient treatment. Little too late. So yes you have to fight to get anywhere and you have to work through all the cheap drugs and prove they don't work before you get more help. These cheap drugs do work for some people but some of us just suffer needlessly. You wanted it straight!
You mentioned that you take turmeric, I also take Turmeric 95% curcumin with piperine, taking it for about 3 months now and would say for sure it's reducing pain and stiffness.
Read up on it ,,and think about it ,,,,it will help ,, I am 64 years old n never smoked but tried it one night cause the pain was so bad n I slept all night ,,, you just need enough to to stop feeling pain
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
I have to start plaquinil soon. i HOPE IT HELPS but the rheumy has said she is fairly sure it will not. I tried turmeric before without a change. Thanks for responding Barbara
I had blood tests at the beginning then every two weeks throughout and my liver went up a bunch of times but back down. Recently though it went up by more than quadroople all of a sudden. My rheumy was stumped as to what had happened. Nothing at all had change in my diet or medication.
I am hoping to get biologics eventually. I hate that i have to suffer because I cannot afford to just buy biologics myself. (I am in Australia). I had to leave my job too I managed a cafe and was very busy, i thrived on it until i suddenly couldnt move anymore. I miss work SO MUCH and feel like my identity was so caught up in that side of me. Thanks for replying ot my thread.
Turmeric made no difference for me but i am glad it helped you!!!! Methotrexate was awful but I wouldve taken it forever if it helped in ANY WAY, but it did not. thanks for responding.
I agree - I am in Australia though and there is a process before I am allowed Biologics. i have to try, and fail, two DMARDS, then I will be allowed to try it. So my Rheumy has said that even though Plaquinil is an inferior drug and she fully anticipates me failing it, I STILL have to go through the process or I wont be allowed to have biologics. it is depressing to have to go through that, isnt it?
The past two months have been hell but I consider myself rather stoic and I assumed that was just what RA was so I didnt bother going back to my rheumy until i was due my next appointment. She immediately said "WHY HAVE YOU NOT COME TO SEE ME EARLIER WHEN YOU WERE SUFFERING SO MUCH" so it isnt her fault - its mine.
I am worried though, about how much worse the damage will get while I am waiting for the LFTs to calm down enough to begin plaquinil and during the time it takes plaquinil to take effect or fail. I am on prednisone in the mean time (she put me on that when she stopped the MTX).
your story sounds alot like mine - aside from the breast cancer! I am sorry to hear of your suffering.
i DONT know if i can handle another 3, 6, or 12 months of suffering, it is awful. i SUPPOSE i maybe have to be more vocal about the pain and ineffectiveness of the treatment. I try really hard to just respect my doctor and trust her and hope that things will go right. Thanks for your response.
My brother also keeps suggesting this! I used to smoke pot when i was younger and i tried it about a year ago as an adult and it was too strong for me, i did not enjoy the feeling. Although its gotta be nicer than tramadol.
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.