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!
Yes! Was told by Dr I was in remission after 6 weeks off all meds then bang! Symptoms returned and back on both prednisone and acterma.He stopped infusions completely this time I will strongly ask to slowly come off infusions 🤞
That last few mg has to be done SO slowly if you are on just pred. And if you can, extending the time between injections/infusions might also give an indication. It hasn't cured anything either, Actemra is just a very good but expensive steroid sparer while you wait for the underlying autoimmune disorder to burn out. As long as it is active you need something to deal with the inflammation. It only works fully even while on it for half of patients, the rest continue to need some pred, and when you stop it I think about half of patients relapse within 6-12 months, some sooner. It is in the documentation for the clinical trials - I read it, I'm taken aback that rheumies use it without having done so too!
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’ve only been on one Facebook site and a lot of utter nonsense was posted. I messaged them to become members of GCAPMRuk and to look at this forum where there were people who actually knew what they were talking about.
We do our best to keep the utter rubbish at bay!! We will ask for references to back up any strange claims and the Admins get the pleasure of discussing that sort of thing with the poster! DL and I read pretty much every single post so things rarely slip through. And all I say is either backed by medical references or is personal experience, either mine or that of other patients.
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.
Exactly. After 6 months on pred, the grumpy rheumy told me that my PMR had gone and that I needed to taper off of pred. I've been given so much conflicting advice from different doctors and each one contradicts the last. If so many doctors don't understand the illness, it is hardly surprising that so many patients get the wrong end of the stick.
I don't get it - I really don't. They wouldn't tell an RA patient on methotrexate that their RA was gone so they could stop taking that. Or any other rheumatological condition. So why do it with PMR?
Well, just think about how people with ME were treated in the past. Many doctors didn't even believe that it was a real illness at one time, until someone realised that it is auto immune. Maybe they see PMR sufferers in the same light. I think that this must happen a lot with illnesses that are poorly understood. I get the sense from the doctors that I have seen that most seriously underestimate how ill patients with pred feel a lot of the time and that they think that is is just a few aches and pains.
Probably - you can't see it, no rashes, no swollen joints. Pred gives you rosy cheeks and weight gain which far too many people still see as a sign of good health. And far too many doctors who don't have a clue think that once you are on pred you are back to normal and all you need to do is get off pred. No acknowledgement it is a chronic disorder.
And almost everyone that I have seen trots out that it will burn out in 2 years time. And I think, erm, should I point out the elephant in the room here?
They don't see the conundrum: this patient has been here more than 2 years, some more than 10 years, with no sign at all of a different diagnosis but still symptoms. I was told osteoarthritis was causing my knee pain - that was a "finger" diagnosis. Thirteen years later an x-ray (how original, imaging!!) showed NO sign of OA. And when a patient gets a much more evidence based diagnosis from another doctor, especially another country, then it is dismissed if it doesn't fit THEIR face.
I hadn't ever noticed before but I enjoy watching GPs behind closed doors. One of the women GPs has never greatly appealed to me but the other day I heard her tell a patient on warfarin they must take the tablets 2x daily, it only lasts 12 hours. Wrong drug, another anticoag has a 12 hour efficacy. And the UK standardised protocol for WARFARIN is a single dose at 6pm so that when a patient is seen by paramedics or admitted to hospital as an emergency they have a reference point for the level it should be at. And I have heard her have a hissy fit because a foreign patient is on a medication from another country that isn't the standard treatment in the UK, really dissing medical practice from "foreigners", We are supposed to accept them as the experts - but they aren't always right.
Same here, the musculoskeletal guy declared that my knee pain was due to OA, without even examining me and he knew I have PMR. When I told him that the pain isn't coming from the joint but the soft tissue surrounding the knee, it was like I hadn't spoke. When I went to see my GP during my abortive attempt to taper off pred, and told him about the knees, he said straight away, that's the PMR and he considered it to be part of the cluster of other symptoms that I was having.
The MSK bloke - a physio with an extra certificate - told me my back was fine as I could touch the floor and he couldn't!!! Obviously had never heard of hypermobility - which a physio here as well as a doctor recognised from how I move. Years before an aged orthopod filling in for shortages had told me I don't have a back problem - after suffering for several years, a GP friend in Germany gave me the name of her back guy. Even I could see the scoliosis which is always worsened by muscle spasm. By the time I returned to the UK after a year or so of work on the muscles it was nearly sorted - but I was refused further treatment because of the pathetic view taken of back pain in the UK. They almost NEVER look for an underlying cause that can be improved.
so interesting, I am both hypermobile with slight scoliosis, but physios I have seen have totally appreciated that it's not a good thing. I can touch my toes, but if I'm on the floor I can't get up that easily !
They vary so much it is frightening. I have had some really good ones and some basic ones. I have given up now as I just try (but not regularly enough) to do pilates... must do better!
That is so true. When I was on high doses of prednisone I was often told how healthy I looked with my red cheeks and my face was all filled in. I gave up too.
Actually, that reminds me, when I went for the thyroid scan and asked them to look at my salivary glands, I made some throwaway remark about doctors not really understanding PMR, the radiologist looked at me aghast. lol I said, well, how come they keep contradicting each other then. He had no answer for that. Initially, I saw someone different at the practice every time and that wasn't helping the management of my treatment. I stick to the GP that I like now, for anything to do with the PMR.
Was that a radiographer (medical technologist) or radiologist (medical degree)?
The trouble is, most doctors learned a bit about PMR at medical school and think nothing has changed. They know there have been advances in other illnesses that have turned things upside down in terms of management - but it never occurs to them work has been going on quietly for the last 15 years or so. Even patients on the forum claim no research is done. The trouble is, it takes such a long time to look at different methods of management. OK, what we talk about isn't a clinical study, but the anecdotal evidence is that going slowly and not creating flares is a better way to proceed.
I think probably a radiologist, I certainly got the impression that he was medically qualified from the rest of the discussion that we were having at the time; especially when we were talking about sjogrens and also the thyroid. He gave me a very detailed explanation of what was going on with my thyroid while I was there and I have never had that before when I have had a scan for any other reason. They always say that you have to wait.
Yes, certainly a lot of work going on and changes in approach and opinion, I've noticed when I've been digging around. One of the first things that I look at when I find an interesting paper is the date of publishing, along with the author. I think the big question about PMR might be related to how well people are keeping up to date with key opinion leaders. Perhaps it's just not interesting enough for some doctors.
Probably not - but lots of changes since about 2012, speeding up since 2015-ish which is about when Sarah Mackie and Christian Dejaco became prominent in the field.
This happened to me in 2018 when having reduced to 3.5 mg Pred, the Rheumatologist confidently assured me I was PMR free and that 3.5mgs was so insignificant that Pred could be stopped immediately. The resulting flare was off the Richter!( Again, pain has been increasing since March,has been discounted as arthritis but now having passed the CrP threshold,I'm being told inflammation levels are high!🤦♀️Don't I know it)
Dear god - you were lucky it was "just" a flare - your adrenal function could have been zero and you ended up in ICU (or worse) with an adrenal crisis.
I had my doubts but he dismissed the small amounts of pain as irrelevant . It was only reading here re the physiological ‘equivalency’ of Pred that I realised that far from insignificant, 3.5 is in the region of 50per cent …🧐( thank heavens for ‘here’)
It took about 4 months of absolute agony ( do I have to climb the stairs / when can I get into 3rd gear and stay there .. not easy in uppy downy Dartmoor 🤣) before a gp locum overrode the Rheumatologist and re prescribed Pred . This forum has been my only source of information…. Only discovered it after that ‘stop the Pred now ‘incident unfortunately , when one of my girls bought me the book and I found the forum 💚💚🙏
The aim of medicines is to force a disease into remission. It may come back when the drugs are stopped, or it may become permanent (a cure!) There is also 'partial remission', of course, meaning some symptoms remain.
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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...
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