I am under the impression that remission means you are off of all medications and have no symptoms of GCA. Is this correct? I’m off of all meds only for about a month. I still don’t feel I’m in remission unless a couple more months go by and I still feel ok.
It’s not important. I’m just curious because I’m on a Facebook site for GCA and many people on there announce that their doctor told them they are in remission and then they state that they will be on Actemra for 2 more years. Everyone then congratulates them on their accomplishment. If that’s the case, then I’ve been in remission for 2 1/2 years which is not true. When I tried to stop before, my symptoms came back within 6 weeks and I started up on Actemra again. That was a year ago so I’m trying again.
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nallufl24
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There a difference between clinical remission (when symptoms are controlled) which is what doctors talk about -and what we refer to as remission -ie off Pred for a number of months and no return of symptoms.
In my opinion, there are two levels of remission. One is drug-induced, the medication manages the symptoms, and the other is natural, no medication but the underlying autoimmune condition has burned out and you have no symptoms.
"The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation. ...
Remission is normally achieved rapidly with GC therapy, although a proportion of patients may be refractory and achieve only incomplete disease control. ...
Several proposals to define remission have been made by international study groups and investigators of clinical trials. They most commonly include the absence of clinical symptoms related to GCA and/or PMR and the normalisation of acute phase reactants, particularly ESR and CRP.12 63 The task force stipulated the term ‘absence of systemic inflammation’ to potentially also include other markers of disease activity such as imaging."
Obviously, the last statement about the definition of remission has some debatable bits. Absence of clinical symptoms is relatively easy for a patient to define but the bits the doctors often get hung up on are not. If you are on Actemra, the ESR and CRP are normalised - but the disease process continues in the background, and it was some time before someone realised that it was possible that vascular damage was still happening. Some people never had abnormal blood markers and others don't develop the acute phase response and raised markers even during a flare of symptoms when they are on any pred.
They don't have an adequate means of monitoring disease activity. Even my very experienced rheumy (Christian Dejaco in fact) insists on using the normal rheumatology assessment tool - pressing joints and asking if they hurt. My joints have never hurt due to PMR. One of his staff carried out a study to try to work out why patients assessment of their disease activity was always worse than their clinical assessment. I tried to explain that they were asking the wrong questions. No, my joints don't hurt, I often can't say a particular place hurts at a specific time - but you don't ask me how my PMR is making me feel in general over the last x weeks. It is a low level of discomfort that permeates everything I do, in terms of pain scores, a 3 perhaps. But all day, every day, that is a really unsmiley face.
I agree with you on a drug induced remission and a so called “real” remission. I’m just always amazed when people on Facebook celebrate their remission and everyone congratulates them. If that was the case I would be considered in remission the first 2 months of treatment. My GCA symptoms were gone right away with 60 mg of prednisone. My inflammation levels were normal in 2 months but I was definitely not in remission. My symptoms were only under control.
Exactly. I always get a slightly jittery feeling when someone posts on here they have taken their last dose of pred this morning and loads of people congratulate them. There is still a long way to go at that point!
Very illuminating posts! I often wondered about the delighted face of my previous specialist, when she reported a clean PET-CT scan. I was on 17,5 mg pred and Actrema and not feeling overjoyed, to say the least, let alone ‘cured’. Different perspectives but certainly different ideas about what exactly is ment by remission.
Ok. So I’m not crazy. I agree with all of you. I feel the people on this site are much more knowledgeable than the typical Facebook user and also some doctors I’ve met.
I think one problem is that some doctors seem to think remission is if your inflammation markers are normal even though you are on 15mg of steroids. In fact some even seem to say ‘you are cured’ and then decide people can stop taking steroids.
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Just curious on who has been on pred and Actemora for long periods of time and if you successfully got off it 
Out of Remission. Starting over...
Actemra Use
Another Actemra question 
