Hello I'm an RA newbie: Hello everyone. I have been... - NRAS


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Hello I'm an RA newbie

Alison1907 profile image
15 Replies

Hello everyone. I have been taking methotrexate now for four months. Recently I was also diagnosed with fibromyalgia and put on amitriptyline which I have taken for three weeks. I have no swelling now. I am doing very well with walking and can do a mile before my knees start to hurt. However my neck is constantly painful and my hands and arms hurt. Every evening my arms and legs feel shaky and burning inside and the pain in my hands is awful.

I hate to sound like I am complaining as I know I'm very lucky to be walking and still albeit slowly doing my everyday tasks. I just would like to know if my symptoms are standard for RA and what to expect.

Thank you in advance for any advice. Every day I read the comments on here and think it is such a good thing to share.

15 Replies
Beaches2 profile image

Hi and welcome

It does sound like you are doing quite well on methotrexate, but your rheumy will hopefully feel there is room for improvement and add in another drug to work alongside mtx. I think as its early days for you, you should be aiming to get rid of all that pain and get close to " normal" and that may take a few tweaks to the meds you take.

Lots of us are on more than one drug......I'm on 3. ( lucky me!)..... But at the moment they are keeping me pain free. You don't want to feel as if you are just ok, you want to feel good, and it is possible. Good luck

Alison1907 profile image
Alison1907 in reply to Beaches2

Thank you. It is difficult knowing how you should feel with no experience to make the comparison.

I wish you well and appreciate you replying.

Freda1949 profile image

I had fibromyalgia for years before I started with RA. What you are describing about muscles burning is exactly what I felt with Fibro. I was diagnosed 'strongly positive' with RA in January this year and I take 6 Methotrexate each week. My CRP readings are rising gradually and at the moment stand at 19.1. The rheumatologist says the pain I have is due to osteo and Fibro rather than RA as he thinks it is under control. We all know how you feel coming to terms with these conditions. Goid luck

Kathy1465 profile image

I was almost diagnosed with fibro after my ra diagnosis. However when I went to a fibro specialist he simply laughed and said, honey you have ra and you don't need another diagnosis. Once I was put on Humira I felt unbelievably better. The metho and prednisone were not enough to make me comfortable. With the addition of the biologic, I felt almost normal again.

Bandido profile image

I have been on Mtx for about 9 years with a few gaps and tried other stuff. I remember first getting RA and becoming a scared cripple. Even the doctors didn't seem to have a clue and ended up pumping enough steroid in me I could move again. A week or so later they let me out of hospital in Spain. When I eventually saw the Docs in UK they said RA and pit me on Mtx. It gets better. I can live normally and no permanent faults. I still have some probs with the odd finger packing up and my wrist isn't good but usable. in the course of any week a couple of problems occur just about anywhere. Ibuprofen hits them and the problem changes to somewhere else. Mondays another 25mg of Mtx and the cycle continues but nothing to fear it doesn't kill you and it's not so bad. I enjoy life and never let go of what I have going for me. RA is not a sentence just a chore to incorporate into your busy schedule of living your life. Good luck.

Alison1907 profile image

Thank you eteams. I plan to do just the same.

cathie profile image

This does sound familiar, but often doctors consider adding another medication such as a biologic to mtxate. They can really boost one another, and its worth considering. The literature is quite thorough and can be scarey but honestly I've been on biologics for about 15 years and they have helped.

mary4444 profile image

hi alison sounds u doing really well and i wish u loads of luck i keep myself active love walking when u first get diagnosed it feels like the end of the world < but its not your body tells u when u have done enough then take a rest its allways worked for me

Moomin8 profile image

Hi- I started on mtx this January, when I was diagnosed - like you, I was able to walk some distance with no problems. However, things progressed for me and I had sulfasalazine added to the mix. Keep on top of things and don't suffer too long without seeing your gp or giving the clinical nurse a ring for advise ☺

Alison1907 profile image

Thank you Moomin8. I have now been on methotrexate for 6 months.

So far so good. I am back at work part time. Get very tired and hurt a lot but I have no swelling. My problem at the moment is my taste. Everything I eat tastes perfect for 2 seconds then it turns into cardboard. The nasty taste seems to come from the back of my mouth. Toothpaste goes wrong too. Do you have any experience of this?

I wish you well.


in reply to Alison1907

I too have that wierd taste in my mouth. It is a greasy oily taste that seems to take over anything I eat. I drink my coffee black, but now it tastes like I add a tablespoon of oil to it.

Alison1907 profile image
Alison1907 in reply to

I'm sorry to hear you have this too. It is such a relief to share with someone who understands. Do you take methotrexate?

in reply to Alison1907

Yes. I am on .7 injections (17.5mg) . I've been on mtx for about 4 months now. Maybe the oily taste will help me lose the 20 lbs that I've gained this year. ( Yes 20 lbs!! I read about people losing weight with RA... but not me :) )

Moomin8 profile image

To be honest, I've had an awful taste from the beginning mtx then after I took sulfasalazine but I'm used to it and don't really think about it. Hopefully it'll settle down in time 🙂

MickeyJoints profile image

Alison, you just complain away! This is the place to do it.

No other place quite like this place!

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