Remission

shandy4greenday

At what point does Arthritis be known as being in remission as I have received a letter from the hospital today claiming my Arthritis is in remission for which I disagree.I am still getting pains everyday some days not too bad. Some days can be quite painful,I have cramps almost everyday I have tried explaining that the pains never go away and how bad some days can be and now hot weather here my swelling gets quite bad in my hands and feet sometimes and then painful and stiff so I am quite confused about how it could be in remission.

maria09

Hi
I didn't realise it went into remission never heard that before unless they mean its not active
But in my view if you have pain then its active or not in remission
Very strange
Maria

shandy4greenday

My point exactly my first couple of hospital visits was good but since then its like they are trying to get rid of you and don't wanna listen.

dreamdaisy

I have heard of the term but not linked with RA. I've read that it can burn itself out but I have no idea what that means. To my way of thinking if you are still experiencing the symptoms then it's still active, albeit maybe not so much at the moment. DD

shandy4greenday

It says:
Disease Activity Score 2.58 suggesting disease remission
Q-Risk 4.2
FRAX 10 Year Risk Mayor osteoporotic3,hip 0.2
NOG guidence lifestyle assurance

I have no idea what any of this means.

maria09

Neither do I and I was a nurse!
Might be with going to see your GP to see if they can interpret it
Maria

shandy4greenday

Well I know for sure I am definately not in remission I think I know what pain feels like for the last 3 weeks I had constant pain in my wrists which has only just eased off this week the list goes on what other problems I get it changes all the time,it is manageable but if I miss my Naproxen after a few hrs I will start noticing the difference pretty quick I think I can safely say it is still very active.

dreamdaisy

This is one reason why I am not copied in to letters: they use professional doctor 'speak' and I cannot understand it. Remission to a doc may mean something completely different to what it means to us, e.g. I never told my mother what the TNF in anti-TNF meant because I knew she would be so upset. Your GP may not have all the answers either as rheumatology is not their field. It might be worth looking up alternative definitions of remission to see if that helps with an explanation. DD

shandy4greenday

I think what it is saying that you can become in remission when you catch it early and with the medication Methotrexate it claims it can stop deteration of any joints therefore remission even though I am experiencing pains still the methotrexate is stopping more deteriation. For many others though before meth was started are unfortunate at getting this treatment in time and the damage has already been done but does not mean it will stop it completely it could still become worse but they think it is in remission I'm not so sure though as of yet.

salamander

Hi, remission is a term used when your disease activity scores are low. What they actually mean is the drugs are working and controlling the arthritis to a greater extent. It doesn't mean it has gone and it doesn't mean you won't flare a week after your tests are done.

I think it is a very misleading term and shouldn't be used unless disease activity stopped for a long time. I was told by a consultant I was in remission, despite obviously swollen joints and a lot of pain. Clearly rubbish!

shandy4greenday

Thankyou Salamander for clearing that up least I have a better understanding of the term now and like you say it is clearly rubbish. I couldn't understand it neither as I clearly am still experiencing pains from time to time and now the hot weather is upon us my hands and feet tend to start my swelling back off again which leads to stiff and painful fingers,as many of us are all fully aware whatever the weather cold,warm or rain we still get some sort of problems.

salamander

I have to add this is my interpretation of 'remission' and my experience of it. Others may disagree

daffy2

FRAX is a risk assessment tool for fractures due to osteoporosis(ie what your chances are of such a fracture) - have you had a scan(usually DEXA) for OP - so I can't quite see see what it has to do with your RA? 'Lifestyle guidance' in relation to OP would be things like the need for weightbearing exercise and adequate dietary calcium intake, so again may not be relevant to the arthritis.

Kittkat

I don't think the rheumatologists even know what remission is. Complete remission would be no symptoms I guess. I think you may be told you are in remission if your bloods are good but you may still feel crap due to joint damage etc!

DebraKelly

I have heard that when some women get pregnant who have RA do go into remission for the 9 months that they are pregnant.

I also know someone who was in remission for 3 years, but it came back.

I think its possible but we are all different.

Mat48

I think that the term remission is a bit of a get out for rheumatologists in the context of inflammatory arthritis. If they had to use it as oncologists do then they would have to acknowledge that drug induced remission is not actually remission at all. I can see how RA sometimes remits during pregnancy and has periods of not being active but I believe rheumy doctors use the term more losely and some just go by swelling and blood markers which is terribly unfair for people for whom inflammatory markers don't show much.

If you know your latest ESR results then you can maybe get more of an idea of your DAS using this link. But it's usefulness is only really in relation to the anti-tnf drugs and whether or not you qualify. Apart from this they should have to treat the patient on their symptoms not just their bloods.

http://www.4s-dawn.com/DAS28/