rheumatoid arthritis

[masymae]

Hi, I have been diagnosed with rheumatoid arthritis for about 12 weeks now. I am taking 5 2.5 tablets a week and one steroid tablet a day and a folic acid tablet 5 days a week. I have taken these for about 12 weeks now. I am not feeling any better but seem to be feeling worse. Very fatigued and muscle aches are terrible. I cannot keep my eyes open some days and feel sick and nauseous. I am starting a new job on Monday and wondering how on earth I am going to cope when I feel so dreadful. Is it still to soon for the methotrexate to be working, as I thought I was meant to be feeling a bit better by now. Has anyone else had this problem?

[nomoreheels]

No, I reacted to MTX well pretty much straight away but I was prescribed it after starting off on HCQ on it's own & then the two together & then HCQ was dropped & MTX took over so it had been in my system a while. Been on it now as my only DMARD for nearly 5 years now & since changing to injections I've had no nausea from it. We all react differently to meds but often we're asked to try to tolerate the tablets for a while (due to cost!) but possibly if your Rheumy thinks you'd benefit from injections maybe he'd prescribe them instead of the tablets in an attempt to reduce your side effects, or even simply an increase of the days you take folic acid. It could of course be possible that the dose needs altering, up or down, or MTX doesn't suit you. It all really needs be discussed at your next appointment.

Good luck in your new job. Possibly not the best timing but sometimes these things happen to challenge us & we blossom!

[masymae in reply to nomoreheels]

Thanks for your reply. I am back at hospital on Wednesday so hopefully they will sort me out. I seem to be feeling more worse each day. The tiredness is horrible and I feel like I am in a world of my own, such a strange feeling, and just ache all day and very fatigued. Hope I don't feel like this all the time. I try to carry on like I am ok when around others. If only they knew how it really feels lol

[nomoreheels in reply to masymae]

As your appointment is so soon I'd start writing a daily pain diary straight away if you haven't already, marking how you are in each painful or swollen joint as well as over all feeling from the moment you get up to going to bed & include any resting time, nausea, sickness, headaches etc. If you mark out of 10, 0 being the least pain 10 the most then your Rheumy will have an idea of your daily struggles. Include things like how long it takes you to straighten up in the morning, climb stairs, get out of a chair, difficulty driving, falling asleep, just as you have told us here. Make any other notes as you think of them & if possible take someone along with you for support. It's easy to forget things unless your Rheumy prompts you & someone who knows your struggles may remember something you could forget.

Let us know how you get on.

[helixhelix]

Did you start on a lower dose of MTX? Sometimes it takes a couple of months from when you get to a full dose. I had to get to 17.5mg (7 tabs) before it really made a difference to me, but everyone is different. However, the steroid ought to be helping and doesn't seem to be so do you have the number of your rheumy nurse to call? probably worth asking to get reviewed and your meds adjusted if necessary. One thing I've learnt with this disease is patience, as everything does take a loooonnng time.

[masymae in reply to helixhelix]

Thanks for answering, its great to talk to people who understand and know what you are going through, others just don't get it. I started on low dose of methotrexate, 2 tablets and increased to six, over a few weeks, but felt really sick and dizzy so they dropped it to 5 and put me on steroids as well. Don't seem to feel that great though. Its been 12 weeks now and I seem to feel worse every day, more tired and fatigued with headaches and no get up and go. Hope hospital can sort me out.

[helixhelix in reply to masymae]

That doesn't sound good so don't try to put a brave face on it and when they ask how you're doing tell them! If you don't ask you don't get, so perhaps write down everything before your appointment so you don't forget in the heat of the moment. Docs tend to respond best to things they understand, so rather than just saying I feel rubbish make sure you say that you are in pain, feel nauseous all the time, have headaches etc etc. Good luck.

[Canada3]

Oh my heart goes out to you... the doctors would have us believe this is the treatment and it will work. Unfortunately it didnt work for me either, and my RHeumo suggested I up my methotrexate to 25mg per week. Gosh it made me so ill, but I did try. Eventually I dropped the amount but still not change in my symptoms. After a tremendously long six months I asked for a second opinion and went onto a biologic by infusion monthly at the local hospital. This worked for me for a time, but sadly I am back to square one. The only thing that really works is the cortisone and I am aware that is not the answer, as long term is very damaging. Try to get another opinion if possible, hound the rheumatologist until you get some relief. Its not good that there are drugs out there to help but NICE guidelines are that we spend 6 precious months on these drugs before any other can be tried. Its very frustrating when you are in the "hot seat". Courage for you I know just how you feel.

[masymae in reply to Canada3]

Thank you for your reply, I suppose all we can do is try. I am dreading taking biologics and like you have taken methotrexate for a year now and feel sick and nauseous every time I take it. The thought of feeling worse or more side effects makes me cringe lol. I seem to be getting worse, so will have to try something else, did it make you feel sick when you had it? Thanks for your reply, it is very comforting

[Joanwolf]

Don't medicate.

[Jen62]

All my aches and pain started in August 2016. I had no idea what was wrong. No blood work showed anything wrong. I still got an appt with rheumatology. I got to where I could not turn a water faucet. My fingers were terrible. So my appt came they really didn't know what to do cause the blood work was negative. But I knew I couldn't leave there without help. I was on prednisone everyday but all Dr's wanted me to come off because of negative side effects from regular use. But honestly prednisone saved my life. I could not move my legs or arms without it. So rheumatology decided to start me on methotrexate and decrease the prednisone. Honestly I could tell a difference in my fingers 1 week after the methotrexate. But I seem to be nauseated just about everyday. I feel like crap. I take zofran for nausea and it helps. It's odd that blood work shows nothing but yet I know something is going on in my body. X-rays were negative for RA. However my body is eat up with osteo I guess because I have been in 7 car wrecks and my neck was fractured in one and my hip fractured in another so I have plenty of metal in my body. The wrecks began at age 15 and I am now 55. I knew arthritis would be an issue at some point in my life but I sure didn't understand the pain. Every bone in my body pops and cracks when I walk. But my issue is with feeling so terrible and besides this I am also on very strong narcotics that doesn't seem to phase my pain any longer. Being on these meds for 20 years doesn't help the situation any either. But I lay lay and lay until I am tired of laying. I take 8 methotrexate pills a week. 1 folic acid everyday. Any suggestions please?