Had to come off MTX. What next update

Went to see my Rheumy today hoping to be put back on some kind of medication after having to stop MTX because of chest infections. Unfortunately he told me that the pain and stiffness I am getting in my elbow and other joints sounds most likely to be osteoarthritis and not an RA flare as he feels my RA is pretty well controlled with just Sulfasalazine at the moment. I have had an x-ray on my elbow and blood tests and will go back to see him in 4 months. I asked what I could do in the meantime to alleviate the pain and stiffness to try to get a good night's sleep but all he could suggest was to see my GP for some pain management medication. I'm feeling pretty low at the moment as I know there is very little available to help with osteoarthritis where as if it had been RA related I could at least have been given something to calm it all down. So now I have RA and OA. Not happy!!


12 Replies

  • Oh Jean, I could have written some of this myself. I thought the pain & swelling I was having was my RD playing up, particularly my knees, back & hips where I'd not had this type of pain before. It wasn't typical flare type pain & inflammation, but still painful enough to stop me sleeping through the night. I'd also been been getting almost continual yet not quite migraine-type headaches which I knew were related to my cervical spondylosis & also wearing me down. Adding trochanteric bursitis & lumbar spondylosis into the mix I suppose it was understandable I connected it to RD. I had been asked by a SpR to only take my etoricoxib when really necessary at my previous apointment so because of that was max dosing my co-codamol 30/500's which didn't even take the edge off the pain & did nothing for the swelling but feared if I stopped taking them the pain would increase. I'd also developed trigger finger which is caused by inflammation & presumed because of the reduction from taking my NSAID daily this was also why my RD was less controlled. When I'd felt like this before my meds were just tweaked & a few weeks later I was back on an even keel so fully expected this to be done again.

    I differed from you as I'd already been diagnosed OA for a few years so it came as a shock when she said it was the OA progressing as it didn't even cross my mind that it was the cause of the pain, it was so similar to when my RD wasn't properly controlled. My reaction surprised even me, never before had I shown such emotion at a Rheumy appointment, not even when first diagnosed.

    I, like you, thought nothing could be done for OA & she requested my GP perform a full pain relief review. Later in the evening I analysed my reaction & reached the conclusion that the unrelenting pain & being so tired made me react as I did & add in the fact I also thought nothing could be done & I just welled up & then couldn't stop the floodgates opening.

    Anyway, I had that pain med review on 18th August & I have to say I haven't felt as good in a long time. I can move so much more freely, get out of a chair without the sound effects, get out of the car unaided, can do my exercises nearly as before & even hoovered two rooms today before I needed to rest. Ok, I know RD's still there, he reminds me each morning, but my back for the first time in I don't know how long isn't painful when I go to bed, whatever I've done that day & best of all I'm getting restful sleep. I'm disappointed it's taken a pretty powerful pain med to give me this relief but it's obviously necessary so I've come to terms with that. My GP prescribed BuTrans patches & started me off on the lowest dose, 5mcg, which has since been increased to 10mcg. She also added 10mg amitriptyline on my repeat script for my cervicogenic headaches & I can count on one hand the headaches I've had in just over a month & certainly no where near as severe. After having CV tests to make sure I'm ok to continue on them long term she reinstated the etoricoxib on alternate days. I see her for a review in a couple of weeks so I'll know better if any of the doses need increasing but if I feel as I do now I don't think that will be necessary.

    So, my fears have been allayed, my OA is no longer bothering me & if I feel as I do now I'm in a good place to face replacement surgery if or when it becomes necessary but hope to stave off further progression with exercise &, as much as I can, diet. I hope when you see your GP you're offered the meds you need to feel nearer to your old self again Jean & they work on your pain as well as mine have.

  • Thanks for your reply nomoreheels. I was also surprised when the Rheumy said it was OA as it felt just like RA pain and I confess I only just kept myself together when he told me as I felt the tears rising. Took 2 tramadol last night which seemed to help through the night and I have made an appointment with my GP to talk through how I can best manage the pain and stiffness. You seem to be much worse than I am with other medical problems added in so it's encouraging to hear that you have found a way to cope with all your pain.

    Still feeling a little down about it today but better than yesterday and I'm sure I will feel a lot better once I have seen my GP and I have a pain plan in place.

    Do you take any Calcium supplements to help protect your bones?


  • My last DEXA scan last July hadn't changed from one I had abroad in 2012 & showed I was osteoporotic borderline osteopenic. If I'd have thought at then time I would've questioned if another would be beneficial to see what my current bone density state was but to be honest once I'd had the steroid injection in my hand I just wanted to go. I was also very aware of my Rheumy clock watching as most of the appointment had been taken up discussing everything but RD & has gone over my allotted time by 20 odd minutes! I started taking weekly alendronic acid & Adcal-D3 back in April but changed to risendronate, again weekly & continue on Adcal-D3 daily.

    My stiffness has eased so much that's forgot to mention it in my ramblings! My GP wasn't surprised when I explained the symptoms as she has more experience or OA with her more elderly patients (I was 54 in July) & confirmed my Rheumy's thoughts that it's progressing quickly after asking how long I'd had the swelling on my distal interphalangeal joints (Heberden's nodes) & how quickly they came on & the beginnings of Bouchard's nodes on my proximal interphalangeal joints.

    I also felt down, for me, certainly not my normal self, but the pain relief has put me back on track so I hope your GP sorts you out but don't be surprised at the strength of med your GP may offer, tramadol upwards! That obviously helped you rest better last night having lifted your mood so maybe it could be just a case of increasing the dose if you're on a lower dose & there's safe room for an increase. Do let me know how you've got on Jean once you've seen him.

  • Hi there I know what you mean, I too am off methorexate, no meds at all for RA and rhuemy says that the pain in my shoulders and knees isn't RA. How can you argue with them. wishing you well.

  • Thanks for your reply denvajade. I couldn't believe OA could cause so much pain and swelling so I thought it must be RA. Do you take any medication for pain relief?


  • hi Jean yes its all so horrible, as I now have major liver issues I try really hard not to have pain killers, only osteo panadol but lots of rest. Not entirely great but trying to heal my liver.

  • I have early OA in my back, fingers and one knee. My younger sister, age 45, has recently been told she has very advanced OA in her knee. She is being treated by a physio who has asked her to exercise twice a day - I think they are quite intensive exercises. She is hoping this will save her from having to have a knee replacement for a few years. The GP referred her as urgent. If you don't already see a physio for RA it would be good to ask your GP to refer you too as exercise is the most important thing with OA I believe.

  • Dear Jean ... I am so sorry to hear this .. know exactly how you feel with OA/damaged joints due to the RA. I am there myself despite Rituximab working to stop new inflammation/new damage from the RA I have a lot of joint damage and will eventually need replacements. It is indeed a shock when you think you have "just RA" to cope with. :-( I think to try keep mobile (hard to do this when joints are so stiff and sore) and see if the rheumy physio can do something to help? Hydro? Exercises to keep your surrounding muscles as strong as they can, to support your joints/bones?

    I found Tramadol excellent but it had a strange effect on me .. made me as high as a kite. It was the best thing I have ever used though for pain relief but I am well aware that some people I know say .. Oh that doesn't even touch me! ... and for others it can zonk them out! I cope well on transdermal pain patches (Fentanyl) but they don't prescribe these unless other things don't suit. They do make you tired too. Think I am just used to being a sleepy head now. ;-) I also prefer my "big guns/blunderbus" pain killers this way as a patch.

    Can you cushion your elbow in bed with one of those soft (fleecy) type night/bed elbow supports? I used to cushion my knee with a shoulder pad from an old eighties jumper which was exactly the right shaped for a knee (or elbow!) .. never mind an 80's jumper ;-) .. so if I moved about in my sleep I would not inadvertently put pressure on it. Ice and heat help too. I recommend Therapearl gel beads in little plastic pillow shapes which freeze and mould easier to joints. About £14 from Boots or online.

    Also a friend of mine made me some Comfrey cream which alleviates pain in the tissues .. and they used to call it "knit-bone" so I guess they thought in olden days it could penetrate down to that level, but I am not sure how much it could do for OA .. but anything herbal must be applied with caution and mentioned to the rheumy. Many powerful potent herbals which are not trialled in the same way as our regular meds can counteract what we take already. I hope you can get all the help necessary to get you back on track and that you can soon start another RA med to help control ther RA. Good luck and hugs. NK. x

  • The ideas above I think are great and I use them with my OA. They say there's nothing they can do, I think they mean there's not a drug to " cure" it but as you have seen there's plenty of things you can do. There is another website which I found very useful as well as NRAS called arthritis Care and they have lots of ideas too for O/A . Sorry you got such rubbish news xx

  • Thank you everyone for your comments and suggestions. I will look into everything you have said so that when I see my GP I will be fully informed and try to get the best pain management plan that will suit me. Hey ho! looks like this is the start of another arthritis journey !!


  • Hi jean, when I had to come off mtx in January my rheumy team told me my ra was in remission as my esr was 5. I knew differrently as I had excruciating pain in my shoulders and upper arms which got worse as time went on without medication. I was eventually offered an ultrasound scan to see if inflammation was present by which time my wrists, fingers and feet were painful too. When the scan results came back it confirmed inflammation in all the areas I could feel the RD attacking.

    Have you been offered a scan? If not I would recommend asking for one. I was put onto new medication straight away. Surprise surprise not long after starting new Dmards the pain eased. Was this pain in your arms present when on mtx or did it only start after coming off it. If the latter then don't feel you have to just accept a diagnosis of OA.

    Whatever it turns out to be I hope you get some relief soon.

    Paula x

  • Hi Paula , now I come to think of it the two times that my knee has swollen massively was when I was off MTX. I think I remember having a problem with my elbow while on MTX but it has got much worse since being off it. It will be something I will keep in mind to mention to my GP.


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