How long

People keep mentioning remission!!! Can you tell me about how long when diagnosed to gettin remission is average..just to know when I may have something to look forward to..

[AgedCrone]

Sorry Handydebs but I think that is like asking how long is a piece of string.After 18 years I still have had blood tests that show I am in a remission versus previous tests but I still had swollen painful joints!

Then other tests showed high inflammation when I was not in pain. So I just take a couple of pain free months as a bonus & get on with things I can't do,when I'm hurting!

No rhyme nor reason to this disease I'm afraid.

i hope you get your remission soon.

AC

[James53]

Hi debs

Unfortunately nobody can answer that!

Nobody not even your Rheumy.

I have had periods of significant immobility followed by periods of remission! I have PA not RA but essentially both have such periods

[Hidden]

Iam just having my first one it has been bad since 2013 and manageable now only on small amount of pain control though it was never going to happen

[Downtime]

I'm am in remission apparently. I have séronégative RA probably PSA now psioriasis has appeared. Sadly it doesn't mean that you're back to normal it seems to mean that there is no progression of the disease and although you have flares the pain is manageable with drugs etc. Hope you get there soon, it does mean my life is fairly 'normal' now.

[Fra22-57]

My rheumatologist says I am in remission but I am in no less pain than when I wasn't. My joints still swell and I can't do things with my hands.Heard at moment it means it's not progressing which is good though.

[Simba1992 in reply to Fra22-57]

This thing with remission is really a riddle to me. In your case and in most cases on this forum it's a question of clinical remission where your inflammation markers are kept in a normal range and your swelling and joint symptoms should meet certain criteria, with medication that you need to continue on to uphold the remission. Then again there are several people with normal blood counts and few joints that are involved that are swiftly put on aggressive RA treatment drugs. These both groups have ongoing pain in common. The clinical remission does not seem to take away the pain or joint symptoms and I have a hard time understanding that the progression of the illness would really have been stoped, perhaps slowed down but can you really speak about remission in the sense that the illness is controlled?

[AgedCrone in reply to Simba1992]

I consider I am in remission when my medication doesn't make me feel dreadful & I have little or no pain.

That will do me.

[Fra22-57 in reply to Simba1992]

I never get looked at.I go to the clinic when asked and moan about my complaints etc and he just says he can't give me anything else.I have other health issues too thou. It's strange how they come to decision you are in remission.

[Simba1992 in reply to Fra22-57]

I think this quite arbitary term clinical remission was invented by the pharma to give a false sense of achieving better results with meds than actually is the case. Remission to me, and how it is defined in most chronic illnesses, is that the illness is no longer active.

[oldtimer]

For me I had a period of remission, or that is what it was called by the rheumy consultant at the time, after being on medication for around 15 years. Tests showed no inflammation, and I hadn't had a flare for over 12 months. So she stopped the medication. I had a few minor flares over the next eight years - just swollen wrists or knuckles for a couple of weeks then going down again, and these went untreated, or occasionally the GP gave me a course of steroids if it lasted longer, and they always settled down within a few weeks. Then boom, suddenly a major episode and I've been back on medication ever since. This rheumy thinks that I wasn't in remission and should have been on immune suppressants throughout. He blamed the GP for not referring me back - but how was the GP (or me) supposed to know when told firmly by a consultant that the disease was burnt out and that I did not need any further treatment.

So be wary if you are told you are "in remission". It also seems to cover a variety of states - from continuing on medication but not having, or only having minor, flares. To what I would think of as active disease - just the blood tests don't show activity but there is still pain, swelling and disability.

[Simba1992 in reply to oldtimer]

I think this is why doctors are now usually recommended to keep their patients on meds, perhaps lower doses, while they are on clinical remission. The same can be said of diets that are working you cannot stop them when you are symptom free.

[Lynnels]

I think that's a really good question. Remission to me would mean pain free. However my Rheumatologists says I'm in remission and I have to say hand joints are good and inflammation markers are down to normal. However I am still struggling with other pains all over (lower back, hips, knees. ribs etc) Rheumy says its osteo and orthopaedic consultant says there's no real evidence of Osteo ...... so a bit stuck really. This disease is a mystery!

[Simba1992 in reply to Lynnels]

So are these pains the result of the meds, do you think?

[Hidden in reply to Simba1992]

No..its how my right hand started.before deformity..they keep telling me not Ra nor OA..my bloods are normal.all test results for RA say negative..scans show severe wear & tear..endless scans.tests.injections.electro tests..& still have no answers..nor pain relief..my Dr calls me bizzare/unique..!!! my consultant at wits end..Ive come to conclusion from mars...x

[Simba1992 in reply to Hidden]

So perhaps it's the severe wear and tear that causes the pain?

Were you on steroids before your " remission"?

xx

[Hidden in reply to Simba1992]

Im not in remission!!! Wish was.& was hoping someone would give me glimmer of hope as to when you get..after how long etc...maybe wear & tear..but after 7yrs was hoping for some relief..😊

[Simba1992 in reply to Hidden]

Sorry, hope you get better soon😊 So what meds have you been on?

[Hidden in reply to Simba1992]

Lol.. From A to Z... Injections operations..x-rays..to MRI scans.. Dr's consultants from here to mars..at every hospital within 100 mile radius..my Dr just rang me like he does weekly..but unfortunatly as a GP.he has done the limit he can..so I get frustrated upset low.some days...& in pain. 24hrs 7 dayswk..x

[Hidden]

Hi HandyDebs - I kind of think of remission like a puppy. At times it lies down nice and quiet, but if you do the wrong things (too much strenuous exercise, eating the wrong things, too much stress, or whatever), it jumps up nice and active.

For me remission will just mean that hopefully I can cut down on my medications some (at least after I get my Sjogrens under control), which I will do until I can tell it is starting to affect me again.

But as everyone else has said, it is totally an individual thing, as is the disease itself. How long is also impossible to tell. Good luck with your efforts and gentle hugs