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spontaneous remission

spontaneous remission

In Simba's post a couple of days ago there is mention of 25% later onset RA cases going into remission after a year to two without medication.

I have wondered a lot about whether all the aggressive drug treatment we are offered affects the bodies ability to right itself naturally.

It's not something that anyone in the medical profession, that I have met so far, seems to want to talk about. There is an emphasis on the severity of the disease and the worst outcome without treatment... but 1 in 4 is a significant amount of people.

When I first began to get all the swollen joints and pain I looked it up in an old homeopathic book, published in the 1970's which describes all the possible illnesses and conditions very well. I found rheumatoid arthritis and thought Ok that's what it is but Andrew Lockie , the author says about 40% of cases go away after a year or two. Maybe the book is just inaccurate (although I'd never found it so before) but it did make me wonder whether, in the pre DMARD era, more cases actually went into remission.

It would to interesting to know whether anyone has any thought on this. I have tried to do some haphazard on-line research but didn't really find any answers.

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Question ! how are the so called facts proved or is it just 'I know someone who?"

Question 2 and the main one do you go by Dr Google ( who might or might not be truthful) or by a qualfied medical experts who are doing there best to prevent the long term damge to your health and that is not just swelling and pain but like me pulmanory embolisms. RA has a lot of less well known about risks of other conditions and to go against informed advice in my view is foolhardy. But I wish you well and hope that if you do go down the no medication route that you do not incur more problems as by the time you realise it does'nt work the damge will have been done.

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Thanks for your response medway-lady. the 25% remission is discussed in the post EORA or YORA and is taken from a medical research article.

Mainly I read medical articles and research online to try and understand more about RA because there is never the time for more abstract discussion at rheumatology appointments. I have a lot of respect for the doctors who are trying to help us & control the disease for the greatest number of patients and, since we are in the DMARDS era, this is the method used but I would like to try and understand what is the trade off and whether, in embarking on the drugs route we sacrifice any chance of natural remission.

I have chosen to take the medication route and appreciate what you say about the less well known risks of doing otherwise.

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Hello roseyx,

I have thought very much on the same lines. Over diagnosing is a new topic among medical professionals.After years of believing that early dignosis and medication will make a difference. It seems that this may not be so as an example has been brought to discussion are different cancers where in fact more ill than good has been the result in many cases. Spontanious remission of 25% was calculated among the EORAs this is why I also felt than instead of jumping the gun I would wait and see before taking toxic meds that could very well affect my body's ability to find an equilibrium. My treatment approach has so far been to find ways to support the body and immunesystem as well as fixing underlying problems that may be factors in the pathology. Unfortunately I am not among the 25% but after 2,5 years I have no deformaties and minimal erosion, I do have pain like most on DMARDs seem to have and I do not think I have made the wrong choice. It may be that I will need meds combined with the treatments that I have been trying out later on but I take one step at a time.x Simba

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Hi Simba, I have had RA for 26years and have been ok on sulphasalazine yoga swimming ect , but refused azathioprine and methotrexate, for the last 4 years I have managed with predisnilone joint injections on top of the sulphasalazine,

I have 3 torn tendons in each shoulder that Im told is due to the fact the ra is out of control,just had a burst bakers cyst in my knee and was unable to walk for a couple of days , they want to put me on biologics and an anti viral,to stop anymore damage.

Im very upset , trying with the diet , considering a fecal transplant , Ive managed for 22 years without the most toxic drugs even had 2 years off all meds , stress caused a flare up again in 2012 , now my gp and rheumy is advising biologics Im very scared of the side effects , any advice ?

xxxxxx

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I too was diagnosed in the 1990's.

After two years I agreed to take Dmards.....not from any ethical standpoint...I just hurt & wanted the pain to stop.

Over the following years, I took Dmards that helped- 7 blissful years on Mtx- & others SSZ & LFL ....that were a nightmare.

Since 2016 I have had RTX infusions.....very successfully so far.......no desperate side effects, but then that is me....some people do react badly, but I took the chance & it paid off.

The only joint damage I have is in my hands, & that is from OA, not RA.

I lead a life equal to my peers, although I do have chronic fatigue....but I have little pain....& can enjoy a good life style.

Only you can decide if you will take your doctor's advice. They know your detailed medical history so you should seriously listen to their reasoning........it sounds as if you are in a miserable place at the moment, so maybe it is time to try Biologics?

I hope you can think things through & make a decision you are happy with.

Good Luck.

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I am so sorry chavaudret that you've had such a hard time with your RA. Being diagnosed in your twenties is quite diffrent than in the sixtees. Biologics are quite new and have given great relief to many, but like with all these meds you are always taking risks that only you can decide to take or not. The only advice I can give is to be sure you find a doctor that you can thoroughly assess your individual situation and the risks you are taking. All the best to you and good luck. Hope to hear how it goes. xxSimba

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Hi Simba, Thanks for your reply. I admire your approach and think it takes a lot of courage. Yes it's whether the meds affect the body's ability to find an equilibrium that I'd like to understand more. For me the 'window of opportunity' idea was compelling enough to agree to try the DMARDS but it's a factor that is very pressurising when first diagnosed.

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Hi Simba - thanks for your post. You mention you do not take medication? Are you able to share a glimpse of how you support your immune system? Do you use paracetamols when you do encounter flares? RA effects everyone differently for sure. - Hessie

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Hello Hessie, Sorry it took so long to respond. Sort of hard to give you a short description of my treatment of my RA. It has been a process with many ups and downs. After extensive research, trial and error am at the present using the understanding and knowledge I have gained during my 2,5 years of the illness.

First I have taken care of underlying metabolic dysfunctions ( very common in RA). During this process I learned a lot of how MY body was functioning and what kind of dietary modifications gave me good gut health as well as what supplements supported optimal cell respiration. My strategy is supporting my immune system through optimizing cellular energy. This means in practice that I support optimal metabolic rate which means that you eat a diet that enables you to have an optimal body temp and pulse. For me all this means:

Diet: I keep away from food that suppresses my thyroid function. I do not eat gluten. I am slowly reintroducing dairy. I eat very little red meat mostly seafood. I only use coconut oil an olive oil. I drink orange juice several times a day. Lots of fruit. I prepare my vegetables since my stomach digests them raw ver poorly. I need to eat often to get enough carbs since my liver stores glycogen poorly. I have low stomach acid and drink apple cider vinegar with protein rich meals.I drink coffee twice a day.

Supplements: Natural progesterone, pregnelone, taurine, glycine, vit.A, B complex, niacinamide, B12, C, D3,K2, oyster shell calcium, copper, zinc, magnesium,

Therapeuticly I take aspirin twice a day deluded in warm water with meals. I take LDN daily. My new project after talking to a wellknown rheumatologyst in UK, is trying out homeopathic meds alongside my existing regime. I am quite sceptical but no harm in trying:)

I've had one flare after a very bad stomach flu. To calm it down I took a short course of pred 15mg on alternate day regime (30 mg one day next none and so on) No side effects. This was the first time I've taken pred. I do not use any other NSAIDs than aspirin since their side effect have shown to be more toxic. Paracetamol has more adverse effects that was thought before, whereas the benefits of aspirin are many.

A bit long, couldn't make it shorter still much left out. xxSimba

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It's a difficult thing for us to assess. Talking to my rheumy, who has seen hundreds - maybe thousands - of cases I feel that her views are sound. She follows the NICE guidelines in that once people had stabilised and bloods are looking good, often at around 2 years, she aims to slowly taper off the drugs. She said that this worked for maybe 20% of people and that some of those were able to stay off the drugs entirely showing that they had non-persistent RA. Others had to start again in a few years.

Her view was that I was unlikely to be one of those cases, and eight years later I can say she was right! Originally she labelled me as non-erosive RA but a few years on that also had to change. I asked her why she had said my RA was non-erosive and her reply was that the missing word was "yet".

The biggest problem is that this is a very variable disease, so impossible to tell whether the people who report success of one sort or another had reactive RA, palindromic RA, relapsing/remitting RA, full-on RA or something else entirely that mimicked the symptoms.

And you also have to consider people's expectations. Simba's acceptance of pain as long as no erosions doesn't do it for me, and I wouldn't call that a successful drug free experience. I want the whole cake: no erosions, no pain and no co-morbidities!

After all, pre-DMARDs the average lifespan of a person with RA was reduced by 10-15 years and the disability caused by damaged joints was huge!

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We make our choices and take our risks.This is an individual choice based on many factors and facts. For me overmedicating and symptom shooting is unfortunately how I see treatment of the chronicly ill today. Research on longterm effects of these treatments and real information about the risks patients are taking with these new meds are all too scarce. Probably not even enough existing facts and information, so the patient is the one taking the risks and everyone of us have their own individual situation and motivation for choosing their line of treatment. I do not think we can or should condemn or belittle the choice others make.

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I'm not condemning your choice at all! Just saying that there is a choice, and yours is not mine... sorry if you took it that way as that was not meant. Amd I'm sure it was not a choice you took lightly, the same as mine in choosing to take the drugs.

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Yes HH it's really not easy to make treatment choices! I have and still am open to all options. This is why I continue my research and experimenting hoping this will help me to make the best possible choices for me. I still have a lot of questions unanswered concerning meds and their effects as well as other alternative treatments. I find also that I am sort of " privileged " getting my RA diagnosis relatively late in life. My recent finding on EORA and YORA has given me more understanding among other things, on how the risks with meds differ in this older group and so on. I hope your new biologic treatment will be of help to you. All the best. Simba

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I was someone who was told that I was 'burnt out' and no longer needed to take the drugs after nearly twenty years of medication on DMARDs (and no erosions). I hadn't had a major flare for nearly five years at that stage. I came off but continued to have occasional swollen painful joints. Then, after nearly ten years without medication, I had problems with my bone marrow being affected by auto-immune disease and then a major flare. I've been struggling ever since.

My own experience colours how I think. How many people with 'non-erosive' disease went into remission without medication only to have it recur later? You only hear about the ones who are currently in remission.

And it is such a tricky disease to diagnose as so many of us know - how accurate was the initial diagnosis?

And it can cause such awful problems that I would rather prevent those! If the medication can give me a reasonable quality of life and not too much pain, I'll put up with the side effects that I have. And, yes, I do all the other things - eat well, avoid things that upset my joints, keep active and don't smoke or drink much alcohol.

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Hello oldtimer,

Actually this is one of my main concerns that I still am working on. In other words: does the long term use of Mtx and biologics weaken your immunesystem and make you infact more vulnerable for AI diseases in the future?

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The whole point of treatment is to reduce the activity of the over-activity of our immune systems which are attacking our own cells. When you stop, then your immune system might remain at the same level as other people, or at a lower level, but it might equally just rebound. That would be an interesting study to undertake, if enough people who were able to stop could be found.

The whole point of collaborative care if that it should be a decision between the patient and the health team. Not just a decision by the health care team to impose treatment on an unwilling participant. Sometimes the decision will be one with which others don't agree.

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What works for one may not for another - in our area it’s Methotrexate or nothing...and sadly my husband has reacted badly to the Methotrexate (he also had bad side effects with Sulphasalzine and Hydrochloquine) - however each time he comes off the Methotrexate he starts to itch and comes out with large red sores that bleed, only going back on Methotrexate resolves this, his RA is not that active so he’s taking the Methotrexate to stop the itching as his immune system is now compromised (he’s been on Methotrexate for over 7 years - never stopped the pain or the flares). But he has been diagnosed with neuro cognitive impairment which Methotrexate has been a contributing factor according to the neurologist so he now needs another alternative, and the neuro suggested low dose steroid (will help the itching and his RA) but he wouldn’t prescribe because husband under the RA specialist and so we are now going round in circles, RA nurse say Methotrexate and nothing else his GP can’t prescribe because he’s under the RA specialist and he can’t get an urgent appointment with the actual specialist until October - my husband is stuck in the middle! If he’d have known what he knows now (his RA was and very minor) he’d never have accepted the toxic drug and would have waited to see what happened...but he wasn’t given a choice and was quite concerned by what he was told may happen - we like a number of people on this site are now much more informed and whilst you can’t turn the clock back we are now trying to find other less harsh and less toxic alternatives.

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So sorry to hear of your husbands hard time with mtx. Without knowing anything of his medical situation I did wonder however why were the steroids not tried in the beginning for the itching? Or perhaps they were?

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Sadly not, his RA specialist refuses and just says he could end up with osteoporosis by time he’s in his 80s. He’s said that he will take full responsibility, he’ll even sign to say no come back on the specialist or the NHS but still the specialist won’t prescribe...instead he says methotrexate best. The last ra nurse a few months ago we saw was adamant he couldn’t have anything else only methotrexate and recommended an appointment in the new year to see the specialist. It’s only through our GP getting stroppy that he’s now got a nurse appointment for next week (different nurse).

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I can well understand your frustration. The medication should always be something both patient and doctor agree upon. The adverse effects of steroids are well documented and are shown to be effective in controlled treatment.Is there no way to change rheumies?

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Hi Libluce8,

Thanks for your post and I am sorry your husband is stuck in such a difficult and complicated place. Did he come off the Methotrexate gradually?

There does appear to be a neurological risk in taking long term MTX but it's not something I have heard about until you posted this. The system of splitting our body up into different specialisations that don't interact much, makes it very hard for us to get the right help for the array of symptoms that come with RA.

It's sad that you say.. if he had known then what he knows now he would have waited to see what happened .

I think it's very frightening at the beginning, being in pain and told how much worse this could become . Added to that.. the window of opportunity should not be missed; i.e. the sooner the drugs are started the better the chance of remission. Neither of these make it seem sensible to wait although I don't think we know exactly what we are embarking on with the drugs. My natural inclination would have been to wait a while but I didn't follow it.

I hope you do manage to find a solution to your husbands problems.

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I agree with you OT......if the side effects are mostly bearable, & the RA seems under control enough that I can lead the life I want to lead.....I'll settle for that. Just because we been unlucky enough to have RA, it doesn't mean we want to sit home, pop pills & feel sorry for ourselves.

I think what we also have to consider is......of 20 people diagnosed with say Sero+RA, there will be 20 different medical histories to consider,& goodness knows how many treatments available.

That is why we put our trust in highly qualified rheumatology consultants.

Sure we can read about X Y Z drugs, know our own medical history backwards, but we don't know how each drug will affect every little niggle we have had in the past.....or how they will react to other drugs.......but hopefully the Rheumy will!

But it's not an exact science, so at some time or other there could be a really nasty reaction...but better that which can be dealt with...than uncontrolled disease.

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Hi Everyone, I feel this subject is complex. It is a very personal decision wether an individual chooses to listen to the advice of their Rheumy or to go alone with holistic therapy or whatever. I recall clearly the day I was officially told I had active RA. I was given leaflets to take away about hydroxychloroquine and methotrexate. I couldn't digest the devastating news let alone read about drugs! When I was prompted to read and make a decision I panicked. The possible side effects - hair loss, nausea, lung complications etc etc in addition to the diagnosis was just too much! I wanted to turn into a crab and hide under a stone till it was safe to come out! That wasn't to be. I saw my Rheumy a week or so later and I spoke to him about my concerns with the drugs. He wrote to my GP and in that letter he said ' this lady has concerns about the effects to her body with the drugs, I have given her time to think things over. If she chooses to eat herself better and/or let her body heal naturally, that's her choice however, I strongly recommend she starts methotrexate straight away'. I was undecided for a while at the same time in alot of pain. I sought advice from other Consultants I was under re separate medical conditions. They all were supportive and informative re the advancement of rheumatoid drugs nowadays in comparison to 15-20 years ago. I worked previously in the NHS and saw what rheumatoid did. - Most people ( at that time) had terrible deformities. That memory swung it for me. I chose the advice of my Rheumy. It is indeed impossible to know what is the best thing to do but a decision has to be made. We are all unique therefore it's not wise to compare with anyone else. Whatever pathway one chooses is their choice. We can only support each other from an empathic point of view.

Suzie x

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I think its important to really respect everyones right to make an informed choice over treatment. Its also valuable to share personal anecdotal experiences of benefits and losses. Our Gp told OH to think 'very carefully' before taking Mtx as it was a nasty drug. She gave no alternative view of Mtx or other options and she's the one who looks after the RA patients once care is shared. Hmm

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From my own experience I have had periods of taking no drugs due to pregnancies (2 with no treatment in between then a ten year treated gap and another 2 with nothing in between but it was a case of either having the last one or going back to treatment) but symptoms have never stayed away for long and for the last one I had to stop breastfeeding early to go back onto treatment. I was diagnosed at 19 and now 51 with a TKR at 48. It also proved 5 years ago that I could not manage without treatment when my biologic I had been taking for 7 years could not control me enough and it took a long time to find a treatment to work again.

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Hi. Some interesting ideas here. My situation is, as I’ve written before, that I developed many inflamed joints very suddenly between Dec 2016 and Feb 2017 when I finally got an urgent rheum appointment. Blood tests confirmed seropositive RA - I also have a niece and first cousin with the disease. Was put on mtx and hydroxychloroquine as well as a tapering dose of prednisone. After a matter of weeks the disease seemed pretty much under control and continued as such even after the steroids were stopped.

Meanwhile the mtx dose (20mg) was causing side effects so reduced that down to 12.5 where I am now. I also reduced the hydroxychloroquine down from 400 to 200 mg a day in August. 2017. In June this year my hydroxychloroquine was stopped due to eye problems diagnosed by the ophthalmologist.

I am now waiting to see whether I can ‘get by’ just on the mtx so was very interested in these posts. I do have some swelling on my hands but this is not new since drug reduction. I also know that at diagnosis x rays detected damage to both knees and hands so I had obviously had RA for some time then - having put previous pain in joints to the ‘aches and pains’ of getting older.

I was diagnosed at 60 and wonder what the future of my disease progression is. Sometimes I dare to hope that I can keep going on less medication because I was older at diagnosis but who knows? My cousin and niece are both suffering some severe symptoms atm - one was diagnosed at 19 and one at 60 so no clues there.

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To be perfectly honest 40/50/60 years ago I think people diagnosed with RA probably put up with far more than we do now. If they still had the symptoms after a couple of years they stopped going to their GP....so they dropped off the radar.

Remember in the 1940's you had to pay to visit a GP until 1947....& just after WW2 in 1945 money was short,& people had more to worry about.

I was diagnosed back in the 1990's & many people -older than me - were really surprised at the treatment I received....I relied on Steroid injections for about 18 months, then went on to ??? Can't recall which Dmard came first! But I have never accepted to take more than one Dmard at a time.I have discussed my treatment with my rheumatologists. (only 2 in 20 years) & they always accepted my choices without getting antsy!

Back in the 1940/50's arthritis was arthritis ....no mention amongst the general public of RA or OA (not much change there then) & treatment was" take an Aspirin" & then later Gold Injections were introduced.

Of course I don't know for sure, but I have weathered RA as well as I think was possible, & think if I hadn't started on Dmards so soon, & now Biologics, I'd be in a much worse place, with who knows what joint damage.

We can only listen to the advice of our clinicians - in the end it is an individual decision what treatment we accept. I hope I took the right decision, so far I think I did.

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That's a blast from the past - I had gold injections 1992 - 1999.

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How did they work?

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They worked well until around the 6-7 year mark when they could not quite keep on top of things but stopped because of pregnancy and this was one drug that was said not to work well again once stopped so never tried it after.

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Funny that it worked well for such a long time. Did it have side effects?

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No significant side effects that I can remember. It was not the nicest of injections though.

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It may be bad luck but one of the nurse practitioners at our surgery told me that he had RA and had been on gold injections. He has awful hand deformities

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Considering the number of years I have been affected (32) I have had a TKR at 48 and hands although tender and not as precise as 'normal' people (buttons etc) and toe/feet pain and wearing insoles I have no significant deformities. I had severe mobility issues around 5 years ago but after a change of meds and then the TKR things are much easier now.

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Glad to hear that. I'm sorry I upset you. I was simply trying to say that there is no one 'magic bullet' that will help everyone

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Oh no you never upset me - I can be a bit blunt when writing things which means it does not sound how I mean. I was just trying to say that although I am in pain or discomfort much of the time I feel I have been lucky to have had the treatment because without it I dread to think how my body would be now as I experienced that 5 years ago when struggling to find something to work.

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It's strange what we can get used to, isn't it. Pain that would floor a "normal' person and you just get on with it. Regarding the bluntness I seem to have the same problem. I call it 'foot in mouth disease'.

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My pain came and went for 20+ years until it came again severely a few years ago. I had been through six surgeries within two years (anesthesia?) including breast cancer (radiation therapy?) or was the underlying RA the cause of internal body problems? No answers. But I’m now on methotrexate and hoping for relief. The only time I find good pain relief is when I’m on prednisone which I am now off of. I keep waiting for a flare. My one doctor ((not rheumy) said there’s always hope for full remission. I felt hope but should have asked him more questions. I pray a lot!!!

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I do have concerns about the drugs. I had huge problems on two of the dmards and developed all sorts of other health issues as a result. That said, the relief steroid injections gave me was unbelievable.

I have been off all meds, but I'm then in so much pain life really isn't worth living ( that's how I feel when I'm like that). I'm terrified of starting biological drugs, and equally terrified of pain and becoming house bound.

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Worth looking into, but I feel it would be very challenging to “power through”

And what about permanent damage to joints and organs in the meantime? I now have residual pain in my hands from damaged caused by inflammation. There were days I woke up to hands that looked like bear paws and my knees flaming hot.

I wound up in the hospital with inflamed kidneys. So..

I changed the way I ate, no drinking, tai chi, movement and my specialist worked with my wishes and wrote me scrips for water therapy. After more than a year of debilitating exhaustion I thought about taking a leave of absence from work.

I finally decided to try methotrexate and I am doing much better. We started on the lowest dose and worked up from there until my levels decreased. I am still hoping for remission.

I feel like we do need to be documenting along side of our doctors. We are the authentic researchers as we are in the thick of it.

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Spontaneous remission is something we all dream of, isn’t it roseyx? I know I do, anyway. My perspective is shaped by my own experience, which is that I was undiagnosed for a long time - years if not decades (some symptoms apparently go back 25 years). Because I am sero-negative and also have early onset aggressive osteoarthritis, I had various diagnoses - including hypermobility syndrome, plantar fasciitis, TMD, bursitis, IBS, uveitis, fibromyalgia, overweight, depression - but none of them inflammatory arthritis... Then I needed a hip replacement at 47 and no one could tell me why. Then my thumbs ‘drifted’ towards my palms (because of tendon contraction, I think) and my toes started moving in different directions.

I was already vegetarian (and have been since 1987), eat well, live fairly healthily... But I got to a point where I could not get out of bed in the morning, I was in constant pain, I was exhausted all the time, and I could only work part-time. It was no kind of life. Lots of us have been there.

Eventually, less than 3 years ago, I got diagnosed with inflammatory arthritis with a question mark over whether it was psoriatic arthritis or rheumatoid arthritis (my dad had a dx of RA and psoriasis; my dx is now PsA)... When they offered me dmards as well as NSAIDs, I jumped at the opportunity. The stakes seem too high to me, and I am very, very keen to avoid another hip replacement and to keep some kind of hand and foot function, if I can. I’m under the care of Chapel Allerton (a specialist rheumatology centre of excellence) and have now also been lucky enough to be offered biologics, which I started 2 months ago. I’m still not 100% well, and the damage that has been done is done; but I am massively better than I was 2-5 years ago, and I have been working f/t in a high-pressure job for a year.

When I was first offered mtx, I was very scared of the nasty drugs (you can prob find my old posts saying so) but someone told me “Fear the disease, not the meds”. And I find that’s my bottom line: the joint damage is just the visible part of RA/PsA; the potential for organ damage is also very real, if inflammation goes under-treated. And I am much more scared of what the disease could do to me if untreated than I am of what the meds might do if I’m unlucky. So I keep taking the tablets - and doing the injections.

Good luck with your own decisions.

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P.S. I suspect a lot of those who apparently go into ‘spontaneous remission’ may have been mis-diagnosed in the first place.

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I’m not sure that I understand the concept of spontaneous remission - or remission of any kind for that matter? Even with cancer I feel it hangs around people who have had this disease like a bad smell, always fearing its return.

My experience has been that autoimmunity creeps around - particularly if it’s seronegative. I was initially diagnosed and treated for RA 7 years ago. I reluctantly accepted this diagnosis and conventional treatments due to pain and fear of joint erosion, drifting hands etc.

What happened was that, 2 years after onset, I still had no erosions and only minimal swelling - but had reacted very badly to 4 DMARDs. So my rheum took me off all DMARDs and my focus became on my increasingly debilitating neuro symptoms. He still maintained, after 5 years, that I had non erosive RA rather than Lupus or Vasculitis with Sjögren’s with pre-existing Hypothyroidism.

I relocated and my ANA and lip biopsy were positive so I was rediagnosed with seronegative primary Sjögren’s. For some reason erosive small fibre neuropathy still has no modifying treatment so, in February of this year I was also taken off my 5th DMARD, Mycophenolate.

All the while I’ve tried various diet regimes, eaten well exercised as much as my feet and legs and poor balance have allowed - walking daily and doing Pilates. I still have very high inflammation in my blood - more so off DMARDs. In my case they tell me this is partly due to severe plasma viscosity caused by Sjögren’s. I drink fluid all through the day but my blood looks dehydrated. I have suffered from serious weakness in my muscle tone since the onset of RA.

So I suppose you could say that my RA remitted spontaneously or wasn’t RA to begin with. And therefore in clinical research terms I’m one of the lucky 25% you refer to.

However I do think I’m more incapacitated by my autoimmunity than most people I know with seropositive RA or Sjögren’s or other rheumatic diseases - who are treated more aggressively with biologics etc at an earlier stage.

I’ve lost so much sensation everywhere and have Trigeminal and Pudendal Neuralgia, sensory ataxia, burning mouth syndrome, have lost my sense of taste, have small vessel Vasculitis wvucv comes and goes, have very poor balance and gait, 2 kinds of tinnitus, degenerative disc disease with 3 herniated discs, sciatica, tendinitis, mildly drifted and numb hands. In my case RA has morphed into other equally alarming and less treatable autoimmune conditions. So if this is drug free, spontaneous remission from RA then I’m not a very great advert for it I’m afraid!

My view is that, until seronegativity is better researched and understood, we won’t get a truer picture of what is meant by spontaneous remission. Because it’s the most common rheumatic disease it’s also the one most rheumatologists choose to specialise in - leaving everyone else with rarer types of systemic autoimmunity, floundering around without any real understanding from doctors, colleagues, family or friends or many treatment options at all. From my own experience I would take research studies into RA spontaneous remission like a pinch of salt.

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Sorry to hear of your hard time with AI. Diagnosing RA or in fact many other rheumatic diseases are quite difficult in the beginning and seronegatives seem to have a tougher time of identifying what it is all about. Some researchers say it's its own entity and more reaserch is needed for correct treatment. I have often stumbled accross that serronegatives have not reacted well to DMARDs. You were also diagnosed with primary Sjogrens which explains your neurological symptoms. As I understand it your RA diagnosis from the start may not have been correct and your medication was more of a strain on your body than of help, then it was not a question of remission of any kind? xSimba

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Yes I think you have grasped my situation to date.

And although things can change my Sjögren’s is at least a definitive diagnosis, unlike the RA diagnosis which always had a ?hanging over it for me.

Looking back it was ignorance about seronegative Sjögren’s that meant none of my rheum doctors, GPs or even the second opinion rheumy Professor identified it. They get so hung up on RA and think it doesn’t matter too much if it’s actually Sjögren’s - and in many ways this is due to how much more treatable it is than Sjögren’s so it was their preferred diagnosis for the sake of expedience and access to better treatments, even in seronegative form. If I had RA then I’d probably be in drug free remission or on more effective Biologics by now.

But, as I suspect often happens, I was misdiagnosed due to lack of awareness about Sjögren’s rather than difficulty of diagnosing RA. And yes I do think RA is actually very easy to diagnose and treat compared to the other rheumatic diseases, provided the technology such as ultrasound or MRI and synovitis are all available and the presentation is fairly classic.

This is certainly what many of us with UCTD, MCTD, Lupus, Scleroderma or Vasculitis feel at least. RA is such a known understood quantity and even seronegative RA is relatively well recognised and accepted compared to Sjögren’s or Lupus.

Many with these equally debilitating rheumatic diseases take years, even decades, to get diagnosed. And then the only treatment option many get offered is Hydroxichloraquine. So we do look hard into alternative therapies and natural remedies because we often have no choice. I’m a bit of an exception to the rule on this as I am still swimming in uncharted sea somewhere between orthodox treatments I was immediately offered for RA and a waiting game with my CTD and neuro team as to where this goes.

You would probably learn more about alternative treatments and healthy lifestyle choices by looking at the experiences of people with Sjögren’s than you will with RA.

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Look at latest post. Answer came in wrong place, sorry.

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Hi again Twitchytoes, Answer to your latest post.,

All this does in my mind raise the question of eventual risks with early aggressive RA medication for serronegatives. Could it be that the effects of wrong meds in fact have a negative effect on the AI situation? Increasing symptoms of the underlying undiagnosed problems?

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Well I’m minded to say that living is risky, living with autoimmunity is riskier still - so to hell re toxicity versus quality of life in the here and now! - if that’s what it comes down to. Quality of life is what I’m focused on not long term effects. But then I’m 55 so can say this now. If my lifelong autoimmunity had been diagnosed when I was younger I’d have thought very long and hard about it all and not been so cavalier I suspect.

For me, and many others, perhaps more so those of us with any kind of Sjögren’s who haven’t the moisture production required to shed drug toxicity, these RA drugs are often particularly hard tolerate.

Whereas those whom I’ve known with aggressive seropositive RA are usually diagnosed fast and are sometimes the ones who manage to achieve drug induced remission. This can only be a very good thing for them.

I am not certainly not going to fill my body with vitamins or minerals or supplements instead or as well as immunesuppression. I haven’t got the mindset to research them enough and would never trust an online stranger enough to take their word that something will help. I just don’t know the risks that taking stuff like Taurine or lipioc acid or turning to veganism might have on me any more than taking Methotrexate. I’m scared of making my SFN and and digestive issues even worse. And at least we are closely monitored on DMARDs.

So far I personally haven’t found any effective alternatives through diet or lifestyle changes or big pharma drugs that have helped my widespread and debilitating sensory and autonomic issues. But I’m all for anything that works for you! It’s all about choice and not being censorious about another’s decision making.

But at the end of the day, if I was offered another disease modifying treatment to try that had a good track record for modifying painful neuropathy and neuralgia - then I would try it like a shot - toxicity or no! X

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I agree at my age the quality of life should matter the most. What there is left of it. I had a real scare not so long ago when my hemoglobin fell very low. I was quite convinced myself that it had to do with my very taxing stomach illness and the bad flare that followed but the doctors were of a different opinion and for once I thought I should listen to them. They were certain it was lymphoma even though nothing in my blood pointed to this. So a never ending series of tests neccessary and unnecessary started that went on for a month, shut up in terrible circumstances in a French hospital. The risk of lymphoma is higher in RA than in normal population, it is greater in those who are on RA meds, for EORA on biologics it is seven times greater than in YORA. So after having leand towards taking biologics during the terrible flare I changed my mind again when steroids had calmed the flare.After having experienced " almost" having lymphoma I would do everything to minimize this risk. So biologics still too scary. But as you say it all depends on the quality of life and a number of personal factors that define this. Not easy no☹️xSimba

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That must have been a very traumatic experience Simba. I know that for those with seropositive primary Sjögren’s the Lymphoma (or NHL) risk is uniquely high compared with the general population and with those with other rheumatic diseases. Are you sure you aren’t thinking of Sjögren’s?

For seronegative we are at less risk of this NHL but higher risk of neurological manifestations. I felt pretty worried about this because the (now retired) rheum who diagnosed me checked all of my lymph glands, told me that I had brain involvement and that I probably needed Rituximab ASAP. As it turned out MRIs proved him wrong. But it’s a constant roller coaster.

I don’t think there are any right or wrong answers re treatment options or choosing not to take these - or, like me, being forever too sick on them or being taken off them to “wait and see”. We are often damned if we do or don’t. But at least there are choices for those with RA. X

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Wow maybe I need to mention lymph glands some time as no one has stopped vet asked me but mine are always inflamed, just no more pills to try and fix the problem

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Hi Twitchytoes,

I keep posting these replys wrongly sorry.

I know the risk for lymphoma in Sj is the highest in AI but it is also raised in RA and the meds and age play their part. I'm glad you had some good news at least concerning your illness.What I have understood that even if there may be choices it doesn't mean they always work, as so many has experienced on this forum. So there really is no easy way out:( All the best to you.xSimba

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I agree with you of course. But do remember that about 1 in 100 has RA and this community will probably mainly be used by the newly diagnosed and those with ongoing problems. So we may be getting a very skewed idea of spontaneous and drug induced remission experiences here rather than an accurate reflection of the real picture. X

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Hi all

This is a really interesting thread. For those of you who aren't aware, EORA stands for 'Elderly onset RA' and refers to diagnosis over the age of 65, where characteristics are different (for example, the gender ratio is fairly even).

25% is of course a large figure, but 25% in remission means 75% not in remission, so it's worth keeping that in perspective. More research is needed to understand who the people going into remission are, as it could be that what shows up in your bloodwork effects your likelihood of being one of the EORA patients to go into remission.

I may have missed something, but I couldn't find the 25% remission figure in the literature review I looked at, and in fact, one of the sentences I found said: "At the end of the first year, the SDAI remission rates were higher in the patients with YORA than those with EORA. At the end of the fırst year, more erosion and high HAQ scores were observed in patients with EORA. As a result, at the end of the third year, patients with YORA had higher remission rates, less radiographic progression and lower HAQ scores compared with patients with EORA."

There are concerns of course, that people who are older at onset might react more badly to the medications and are more likely to have other health problems and so be on other medications. However, the study mentions that "many studies in recent years have shown that DMARD-related toxicity in the elderly is low and comparable to younger patients." The study concludes that "even in patients with EORA, DMARD treatment should be started quickly. "

So, while there may be differences to consider with onset of RA that occurs after the age of 65, there should still be caution around the assumption that spontanious remission will occur, and more information is needed about the variables other than age that make this happen in these patients.

It is also important to note that this refers ONLY to those diagnosed after 65. For those diagnosed below this age, the evidence shows that medication makes remission much more likely and that not being on DMARDs makes joint damage far more likely as well.

In the past, when some of the diagnostic tests used today did not exist, part of the diagnosis of RA was to look for signs of damage in joints. Now that diagnosis can be made without damage, people have been diagnosed quicker, which has led to quicker treatment, which has led to better remission rates, less erosive damage and less impact on lifespan. We therefore know that overall, people do better on the medication than off of it, even taking into account the potential side effects of these drugs.

Whether or not EORA patients should, in time, be treated differently to those diagnosed earlier, and how to determine the other characteristics which could make remission more likely. While the researchers themselves are saying it is too early to draw conclusions and suggest changes to treatment and guidelines, until further studies have been done, I think it would be highly premature for anyone to use this information as a basis for delaying their own treatment of the condition.

Thank you for raising this. For those interested, here is the literature review I have quoted from:

ncbi.nlm.nih.gov/pmc/articl...

Kind regards

Victoria

NRAS Information and Support Manager

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There is an abundance of studies and research on the subject, with results that contradict each other. We also know that there are numerous studies that would be of value but are not published because they are not supporting the existing treatment praxis. This is no secret. As a patient you are in fact in a very difficult possition in calculating the risks and finding a treatment path that your rheumatologiste will support and that you feel comfortable with. The truth about the long term effects of many new meds remains still to be seen so it's in my view not just a question of believing that the best treatment option is automaticly in the drug and the protocol offered.

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Hi Victoria,

Thanks for your response and overview.

I think if you look further down in the post EORA or YORA and read the 2nd link you will find where the 25% figure is extrapolated from. It does say, as others have pointed out, on this thread, that some of these cases of remission are probably due to wrong diagnosis.

As you say, overall, it's clear that current medications have brought great benefit to the majority of people with RA and that's a powerful reason to accept taking them but it's not the complete picture. We have to take a gamble with the risks and accept a lot of unknowns.

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