Call For Remissioners !!

Hi all,

I have been on MTX and plaquenil for three months. Stiffness and swelling is parially under control. There's a bit of improvment in general. However, I'm never pain free especially in the morning. My hands are still aching in the mroning and so do my heels. I was pain free for just two days and I had no idea why. Anyway, my two doctors say I'm in remission !!!

Could anyone here who is in remission define what remission is, how you feel, how your doctors decided you're in remission, how long it took you to get into remission after you started treatement and have you stopped drugs??

Thanks,

Hala

17 Replies

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  • Hi Hala,

    Interesting question as I've also been wondering what remission really means. It's my dream, but what would it be like? So I got nosey & did a search here on HealthUnlocked & it threw up some really good answers.

    Hope you find the answers you're looking for, RAinK

  • Links please :)

  • Hi Hala,

    Sorry, I'm not 'techno' enough to do links - something I clearly need to learn to do. But if you go to the top right corner of HealthUnlocked & type "remission" into the "Search HealthUnlocked" box it should give you the same results it gave me. If you have a dip into the answers I am sure you will find something that helps.

    Hope it does, RAinK

  • Good morning Hala :) I'm happy you've experienced some improvement! But I am also surprised and concerned your doctors tell you you're in remission if you're clearly still experiencing symptoms.

    I'm on Simponi and Leflunomide and have been in remission 'officially' since March 2013. My rheumy did a DAS and I scored 0. I have no pain, swelling or stiffness. Sometimes when it's very cold or I've been extremely active my ankles or knees hurt but never for long. My right index finger is also permanently 'swollen', i.e. even when the drugs kicked in, it's never shrunk back to its nomal size.

    I was first diagnosed in October 2011 (after a year of steadily worsening symptoms). I got treated with Hydroxy, MTX, steroids (lots of them!) and NSAIDs. Nothing worked until in September 2012 I got biologics (Simponi). 5 days after the first injection my swelling and pain vanished. It hasn't returned since. A few months after that my rheumy switched me from MTX to Leflunomide as the MTX was making me extremely sick. and He said a DMARD helps the biologic work better so I've been taking Leflunomide alongside it. I haven't had much side effects on that except for loss of appetite and a bit of thinning hair. Last year in April I tapered off my steroids after over 3 years on them and I had no flare or anything while coming off them.

    Now this is important: I am in drug-induced remission. This means I'll continue to be symptom-free as long as I keep taking the meds. SO: never stop meds if you feel better!! It means the meds are working and RA will come back when the meds go. I might be wrong about this but as RA is a chronic condition I believe there is usually no 'actual' remission, i.e. things don't improve without meds. I think the definition of 'remission' differs from person to person though as sometimes there has been joint permanent damage and some level of pain is unavoidable even if the drugs keep RA under control. I was very lucky as I haven't had any erosions when I started Simponi, I was diagnosed 'in time'.

    I really hope I was able to help a bit!! I think you should probably go back to your rheumy, tell him you're still in pain and that they should define remission for you. Have they done a DAS? Blood tests? X-rays? I hope you'll get some answers soon!

    All the best and hope you have a very lovely weekend :) !!

    Christine xx

  • Thanks Christine for your reply, my ESR and CRP are alright, could you tell em more about the DAS score?

    Want to discuss it with my doctor next time.

  • Hello again!

    Here's a good overview from the NRAS website:

    nras.org.uk/the-das28-score

    There is also an infomation booklet about the DAS score available (scroll down towards the end of the following article):

    nras.org.uk/patients

    Best,

    Christine

  • Hi I have been on MTX and hydroxychloroquine for 9 months and have been told I'm also in remission, my DAS score is very low , my consultant is taking about withdrawing my medication when I see her again in August , but I still get pain ,it's like electric shocks running round my body some days .

  • My doctor never talks about stopping drugs, it's a NO NO NO

  • I was told I was in remission. This I understood was the meds working. I was kept on them and went up and down, but basically ok. Then a Dr with one eye on me the other on her lengthening queue decided I should come off all my meds. It was catastrophic. She should have made it much more gradual and I should have been checked more often. More than a year later I'm gradually clawing my life back with a new Dr. Not there yet, far from.

    So my suggestion is to make sure what is done is gradual and that you get to see rheumy team often. Remission to me just means the meds are working. Often

    Keep well

  • There are some interesting pages on the NRAS website about remission, here... nras.org.uk/-what-does-remi...

    Do you know what your DAS score is? As it does seem that different rheumys have different ideas about what level constitutes remission. And it's worth knowing as Cathie's experience shows some docs are quite quick to suggest removing drugs. I've had RA for 5+ years now and am in a pretty good state, and can live fairly normally, but have never got down to remission (DAS below 2.5). I'm usually in the low disease activity category, so have little niggles and morning stiffness and occasional patches of flares.

    I did have a period where I'd been stable for a couple of years and I was feeling very positive and persuaded my rheumy to allow me to start tapering off the drugs. Well that wasn't a good idea at all! She was polite enough not to say "I told you so".

    So I'd question your rheumy pretty hard, and try to get an idea of what his or her treatment plan is.

  • Sadly, I haven't experienced remission myself, even on the current lorry load of drugs: Enbrel, MTX, Hydroxy, Sulfqsalazine and 6mg Prednisilone. That's a massive arsenal. However, my ex-partner who was diagnosed six years ago, is now on just 2.5 mg MTX - when he remembers. He expects to be taken off all drugs at his next appointment. That's what I call remission. He didn't even have a flare when he had a heart ablation a few years ago. I have read, and was told by my consultant, that there is something called monocyclic Rheumatoid Arthritis, and this is clearly what my friend had. There is a variation, a pattern of Remission/ Relapse, or there is the chronic/ progressive variation. I suspect, though do not know, that most people using this forum fall Into that latter category.

    As I understand it, one element of the DAS score is supposed to be subjective; how does one feel. The registrar I used to see definitely respected my own score on that question. The consultant whom I now see does not. He gave me a score of 5 when I last saw him.

    In my mind, there is a difference between Under Control ( with drugs) and Remission ( without drugs, or hardly any).

  • I'm different to most people here in that I've been unable to tolerate 3 DMARDs and many other drugs too. I was diagnosed with seronegative RA in 2011 after 9 months of rollercoaster polyarthritis which settled in the synovial joints of my hands and wrists finally. I had already tried Sulfasalazine, Kenalog, Prednisolone and Amitriptyline by the time I was formally diagnosed and put straight on MTX.

    After about four months I was still flaring off and on in one or two joints at a time - but most of the visible swelling had gone away in my hands and pain had significantly reduced to just low level mostly - rather as you describe.

    After six months my ESR was back up in the 60s, couldn't raise dose of MTX because of liver so Hydroxy was introduced as well. I still flared and pins and needles started up so rheumy switched me to MTX injections and at last things really did take effect - ESR dropped and I had about four months pain free. I did take a drug break at this stage because I was suffering from pins and needles, constant nausea and a horrible taste.

    Within a month I flared so badly in one wrist that my hand changed shape so went back on MTX rather shame faced - but stayed off Hydroxy.

    Then the pins and needles turned more widespread and unpleasant and I was taken off MTX by my GP with rheumy's agreement. This time RA came back after a few months in my feet. Went onto Prednisolone for a month and then Hydroxy on its own.

    This really worked and ESR came down to a lowly 17 and I was pain free at last but unfortunately I got angioderma and hives from it so came off again. Was put back onto MTX this time last year - again my ESR was high but no sign of joint pain or swelling - just general flu like aches and stiffness and awful nerve pain, electric shocks etc. Rheumy said my DAS was too low for Biologics. But again the bad taste and GI issues returned so came off it after 3 months. This was in June last year.

    I've been off DMARDs ever since and RA hasn't come back. ESR still fluctuates and is usually high again and my nerve pain is constant in my feet, ankles and up to my knees - same for hands and arms.

    Told by rheumy that the high ESR is not a sign that my RA is active but still the term remission is not used. Just told by rheumy that so far my RA has been seronegative and non erosive and so I should stay off the RA drugs because of my tolerance issues.

    He thinks the five year prognosis might be quite good for me. I don't know if this is spontaneous remission brought about by the aggressive treatment or whether this can even be called remission at all. I have now been diagnosed with an idiopathic small fiber neuropathy. None the wiser about any of it really but as I say I'm not typical of someone with this disease at all.

    I haven't seen my rheumy again since 1st August but will see him again mid March. I suspect he will say my health problems have changed and are no longer RA related as I have no fractured feeling or swelling in my joints anymore but unfortunatejy I don't feel well enough to enjoy this! My last ESR was done in October and was 55. Could be classed as undifferentiated connective tissue disease next time I am thinking.

    If a drug works well and you can tolerate it okay then I really wouldn't come off it. If the rheumy takes you off RA drugs make sure they monitor your progress more frequently and keep a close eye on pain, stiffness and swelling. No good if they just forget about you.

    Most of the expert advice says that RA doesn't ever go away by itself unless it has burnt out after romping about for many years. However someone on this forum (Jo above!) did speak about monocyclic RA which is a one off period of the disease but it only affects 5-20% of those diagnosed and the information/ research I have found to be pretty old now. I will ask my rheumy if this is what he thinks I have. I think the real danger of this type is that it can present again with a vengeance or come sneaking back in other ways. Not as enviable as it sounds therefore because of this uncertainty - especially if you are relatively young.

  • I think my experience shows that sometimes the medics insist you come off drugs and ignore your experience. All I can suggest is to seek a second opinion. I wish I'd done that much earlier. Which is why I wanted to share my experience. Xx

  • I was diagnosed with RD in 2011. However, I had had it for nearly 10 years before then, but just thought this is arthritis and age. Lived on max strength ibuprofen, usually taking twice the daily recommended dose!!After being put on MTX at first but not tolerating it I was put on Sulfa and Hydroxy. This combination is working well, but I still have low level pain and stiffness, and the dreaded fatigue at times.

    Compared to how I felt before, I feel so much better. At my last annual Rheumy check, he did suggest that I was in a chemical remission, and he'd wait another year to see how I felt in November of this year, before even thinking of reducing drugs. I'm scared stiff of this, as I cannot imagine going back to the awful pain I was in. I always feel it is in the background rumbling away, just waiting to re emerge!

    That's my story on remission, so I hope it's helped a little

    Carolyn

  • Hi Hala, I think this is a great question to be asked!

    I have had two periods since diagnosis where I have been able to go off my NSAIDs (relying solely on Humira and MTX) - one of them being right now. The last time I was "pain free," I felt great actually. I was very active and did indoor rock climbing, went ziplining for my hubby's birthday, and worked at the monkey bars at our local playground (I managed to get to the third rung - which is amazing since as a kid I couldn't even hang from the monkey bars!). Just to give you a comparison, that was after being in constant, excrutiating pain where I could barely manage stairs, couldn't lift my 10 month old, couldn't even fasten my bra... Then a lot of stress and a drop off in exercise (in my opinion) led to a flare that lasted about a year. I managed to stop taking my NSAIDs in November 2014, and still don't need them, and I'm back to slowly reducing my MTX. I haven't been as active as I would like to be, and my stress levels are fairly high at the moment (I blame the weather, sick kids, totalling my car, house for sale, etc), but so far so good - no pain or stiffness at any time of day.

    I do have to watch myself if I go to turn a doorknob quickly or grab something very heavy (my left wrist in particular seems weak and ill-equipped for sudden burdens), but normally I don't even think of it. It's actually been gratifying to realize that I have a lot of crap on my plate right now, and my RA is not at all one of those. Fingers crossed that it lasts (I can almost do that!)...

    Best of luck to you in your journey,

    Karen.

  • Ive been on Mtx 15 weekly and hydroxy 200 bd for over a year. My Crp and ESR never really above normal yet diagnosis confirmed with v high levels of Anti CCP.

    So according to DAS always in remission. Always of late in pain of some description. Shoulder, hand and fingers various and occasionally the odd knee. Today v painfull right hip pain.

    Pain and stiffness not always accompanied by inflammation and not symmetrical but I'm in remission? According to DAS.

    When I was in Mexico in January and Greece last year pain went and stayed away for at least two weeks on my return. Thought I was cured. Wonder if sun beds could give same benefits?

  • Thanks everyone for being so caring :)

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