Off meds since christmas

Saw my Rheumy in January he said to stay off meds and says what I was discribing sounds more like connective tissue problems. Last few days i have been feeling more stiff my hands, wrists feel tender my shoulders feel like they are being pinched on the inside, my hips hurt when I walk and I feel so tired even after sleeping although I toss and turn through the night. When I did see the Rheumy he did say to give the nurses a call if things changed I don't want to feel like I am wasting there time but I feel it myself that something is not right I thought I might have a blood test then give them a call for the results. When I was first diagnosed I could hardly move and was in constant pain and I worry that being on no meds if there is something going on that I might be getting joint damage. Thanks for reading xx

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  • Hiya Jaadee. If you feel symptoms returning I wouldn't hesitate to do as your Rheumy suggested & contact your Rheumy nurse. Don't feel as though you'd be wasting their time, it could be that it's grumbling away now your body had been free of meds 2 months or thereabouts & if you feel things aren't right you may well be right. If you leave it longer it's possible you'll start to feel as you did when you first saw the Rheumy & I'm sure you wouldn't want to be there again would you? It could be that once you've seen the nurse she'll report back to your Rheumy he'll suggest he sees you again & discusses just where you go from here, I hope so for you anyway. :)

  • Thanks nomoreheels I will give my Rheumy nurse a ring tomorrow x

  • Hi Jaadee. I completely understand your situation and your worries. My rheumy suggested I stay off my meds too having failed to tolerate three so far - this was last June. Despite many other problems that are idiopathic or connective tissue related and despite some stiffness and a raised ESR - I haven't had any return of the joint pain as it was when things started for me.

    I do totally understand how hard it is to deal with the uncertainty and know when things are worsening because it can creep up on us - RA can be stealthy and it seems quite a risky strategy to just let us be in this way. And for people with aggressive RA it can sometimes be hard to understand how the uncertainty and waiting is almost worse than the original onset - we seem to be relatively lucky from their perspective I think. But even non-erosive RA is usually erosive in the end so we do worry about not being on any DMARDs inevitably.

    However there are many different connective tissue diseases and not all, so I'm told, require the same early diagnosis and aggressive treatment as RA does. Lupus, Sjogrens, Scleroderma and Vasculitis - to name but a few - can occur much more slowly and subtly. Undifferentiated Connective Tissue Disease can fizzle out occasionally or else quite commonly remain unchanged and be managed with a drug such as Hydroxichloraquine or infrequent periods on steroids - so this has a good prognosis for many.

    Once it has been established that a patient has a non-erosive form of connective tissue disease - sometimes specialists prefer to just observe and see what develops so they know how best to treat effectively and not over treat with potentially toxic drugs. These diseases can go in so many different directions I have learned. .

    It is a good idea to ask for regular blood tests anyway to keep an eye on yourself and inflammation levels etc. I suggest you speak to your GP or rheumatology nurse about this and give them regular updates on your symptoms - keep a diary of how long you are stiff for for example. But then once you have done this try to just relax and forget about it for the rest of the time and not dwell too much. Easier said than done I really do know!

  • Are you still off all meds Twitchytoes if so how are you coping? I've been on all the usual meds mtx hydroxycloroquin leflumonide salfasalvazine sorry about the spelling had reactions to all of them. The one bit of advice the Rheumy did give me was to keep on the go and keep moving x

  • I think that's good advice from your rheumy and I normally stick to it religiously myself. But lately I have been too unwell - with a chesty flu thing and severe fatigue and increase in widespread pain. I tried Sulfasalazine, Methotrexate (both pills and injections) and Hydroxichloraqune and had bad reactions to all of these. I've also tried many other drugs and tolerated none of them to date.

    I do understand why my rheumy took the line he took under the circumstances. My seronegative RA seems non erosive to date and not worth the problems the drugs were giving me. He felt that the five year prognosis might be quite good for me - although "things can unexpectedly change out of the blue". Like yours he is contactable through my GP so after 9 months I have to say I'm glad he chose this route of observation and responding as and when required to. My GP has written to him several times to update him when I fell off the rheumatology clinic list twice.

    I haven't been at all well if I'm honest - but the problems haven't been with the classic RA symptoms I started off with. My problems have mostly been neuropathic over the last two years. I'm under a neurologist now too. Nothing has yet emerged clearly despite many tests including a lumbar puncture, MRIs and nerve conduction tests. I'm to have a skin biopsy next week to see if they learn more about my idiopathic small fiber neuropathy and how advanced it is. However I've given up expecting anything to show up now and am almost resigned to self management until or if the RA comes back or things worsen.

    I have many other bothersome symptoms currently as well as dizziness, nerve pain and jaw and nose problems, nose bleeds and sores, upper abdominal issues, chest wall pain and other problems associated with autonomic neuropathy. But none of these are treatable with disease modifiers apparently unless I have a clear diagnosis of immune mediated neuropathy or Vasculitis of some type. Or unless the RA returns in the form of clear synovial swelling in which case I will be put forward for an anti-tnf. Otherwise it's all just vaguely connective tissue related.

    I would happily try another DMARD now (apart from Leflunomide or Gold) if they told me it would help me feel better. But have been told that they won't let me try another now unless they are sure that my problems are autoimmune. I see my rheumy again a week on Thursday and have emailed him with a bullet point list of my present symptoms in case some kind of penny drops with him at last. Tx

  • twitchytoes, I might have said most of what you said above. I have been at Mayo Clinic Since Nov. It's either inflammation or Auto immune. I am first going to be tried on Rituximab 2 treatments back to back 2 weeks apart, then 2 more treatments back to back 2 weeks apart in 6 months.. MTX - 10mg weekly... if this doesn't do it or I am not showing improvement -= especially with neuropathy - autonomic, sensory, motor plus inflammatory arthritis , then we will stop treatment and go onto massive amounts of steroids delivered by IV... I was told that I will be awake for 2 weeks straight for treatment of autoimmune.. I am in for a bumpy road at this point. My spine hurts, my feet and lower legs are numb and very painful as most who have neuropathy.. my hands are starting to get symptoms too.

    I had one of my Rituximab treatments. I feel pretty normal with my aches and pains... neuropathy didn't improve yet.. and it may not for a year or more.. I will be tested again in 6 months.,.. I have to trust that Mayo knows what they are doing. They did every test imaginable plus.. so now I am doing treatments locally as instructed by Mayo...

    I do hope that they get going on treatments for you. Waiting while it worsens is

    terrible. They waited so long that I had empty nerve strands when they clipped

    out 5 inches of nerve on the side of my ankle.. that means that they should have

    started treatments at home - but the doctor didn't hear me, I guess when I said

    that the numbness was more dense and on the move higher in my foot, ankle area.

    I can barely feel my feet hit the ground. I use my hearing to prove to me that my

    foot is on the ground. I cannot run anymore. I used to do that daily. = / . I am

    working at home for now. (Bummer) X Karen

  • That makes very interesting reading Twitchytoes sounds so much like me, I'm off to work now will have another read later x

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