Non-prednisone coping advice

[barbpmr]

Hey I'm new here. After about a year, I'm off prednisone and get a little neck stiffness at times but no pain. What are others doing to minimize inflammation/symptoms/flare ups from PMR to avoid going back on Prednisone? eg. Nutrition? Hot or cold packs? Tylenol? Thanks.

[PMRpro Ambassador]

I doubt you will get much response - there really are very few non-pred users on the forum or any who wouldn't go back on pred if they needed. It might be alleged by some that is because we push pred here as the answer to PMR and GCA - and that is possibly true since there is no other way to modify the effects of the underlying autoimmune condition. There are no cures for most autoimmune disorders - they don't know enough about the process to develop any.

Once the autoimmune disorder quietens down, if you are lucky burns out entirely, then there are two scenarios that are common and a third that is far less common.

The first is that it really has gone away and it doesn't come back. It takes about a year after stopping pred to really feel back to normal - and that normal depends on how long you had had PMR and been on pred and, to some extent, your age. Then life goes on as usual. I'd say that is the most common story - but the time it takes from start to finish varies widely, from a year or so to 4 or 5 or sometimes more. But it does happen sooner or later. If you had GCA originally then that is almost always the case, although a few people do have recurrences it is rare. And sometimes (very rarely) someone with GCA originally develops PMR much later.

The second is that the symptoms of PMR reappear in a relatively short time, weeks or months after stopping pred. This usually reflects the fact that the underlying autoimmune disorder had not burned out entirely but was at a very low level of activity and over time the unmanaged inflammation built up again to a level that caused symptoms. Prof Dasgupta has said in the past he often keeps patients on 2 to 3mg longer term as it reduces the incidence of relapses. I think that is probably pessimistic - I know plenty of cases where 1mg per day, even 1/2mg per day, is plenty to keep it at bay but dropping to zero results in problems. Most are able to get to zero pred later though it may be a couple of years.

The third is that patients get off pred and back to normal for some years and then have a relapse. Almost all say that they found the episodes totally different - scenario, symptoms, duration, dose of pred they needed, rarely the same. But they too get off pred again and carry on nnormal life - albeit considerably older and that makes a difference.

After over more than 12 years involved with PMRGCA charities and thousands of patients, my impression is that there are certainly 3, maybe 4, possibly 5, different versions of PMR, some versions being variations on a theme, sort of A and B presentations. There are 3 different versions of multiple sclerosis, also autoimmune, so why not for other conditions? A few top rheumies in the field are also now agreeing that PMR is NOT the simple and harmless disorder that it has been portrayed as being in the past. It doesn't kill perhaps but it can be very disabling when not managed well. And it frequently ISN'T managed well.

Instead of getting together with patients to make sensible adaptations to management with pred, many doctors try to use patients as guinea pigs, adding in DMARDs or other drugs, without any proof under controlled conditions of their efficacy, fixated on an idea that these other drugs are safer or better tolerated than pred. Since they have never taken them themselves, they don't know that - and they often forget that patients are scared to tell their doctor that "drug x makes me feel ill" so they are misled into thinking they don't make them worse - at best they don't make them ill but they don't make any significant difference to the dose of pred. And in the meantime there are 2 lots of long term effects being created.

So basically - probably little you can do in terms of hot and cold packs and the like - they might work in the acute setting but not prophylactically. Nutrition? You should be eating as well as you can, but there are no magic foods or supplements - and supplements are often not as good as a good quality diet, spend your money of fresh, good quality food - maybe organic sources have a lot to be said for them. But even that is a minefield and definitely expensive. Tylenol? If Tylenol/paracetamol/acetaminophen (whatever you call it locally) works - the chances are it isn't PMR! And it certainly won't work prophylactically. It also has long term adverse effects on most organs in the body - it isn't as innocent as some doctors will have you believe, especially in the elderly, and research is now emerging on that. Probably the best thing to avoid is stress on the immune system - probably easier said than done given the wide range of factors that contributed to PMR in the first place. None of that can be erased and the genetic part of developing a disorder is there for all time. The propensity for the immune system to go haywire remains - unchangeable so you might as well ignore that and get on with life. Most people do - we rarely get people returning, a few, but I also know loads who are off in the world getting on with it. And one who got back to climbing the Himalayas - and working in the charity running a support group amongst other things.

If you have got off pred in Scenario 1 - be grateful and enjoy life as well as you can.

[barbpmr in reply to PMRpro]

Thank you - this was super informative. I tried going off pred once before during the past year -since I don’t feel well on it -and PMR symptoms did come back. I was able to keep the PMR symptoms at bay on a pretty low dose of pred (my CRP went down to .6) I will see what happens this time. I can handle mild symptoms vs rxn to pred - hoping to be in group 1.

[DorsetLady PMRGCAuk volunteer in reply to barbpmr]

Well just make sure they are mild - but should they intensify please don’t ignore them. As PMpro has explained, if left untreated the inflammation can cause a lot more damage to your body than you may realise.

Plus of course you do need to be aware that there is a possibility of PMR leading to GCA, and that brings a whole new set of issues including potential sight loss.

[barbpmr in reply to DorsetLady]

Yes will keep in mind - always trade offs when it comes to treatment- so didn’t know that GCA can occur anytime . Watch for headaches, jaw pain, other?

[DorsetLady PMRGCAuk volunteer in reply to barbpmr]

Mine -undiagnosed for 18 months-not through lack trying to get an answer on my behalf - was painful stiff shoulders originally. Followed by increasing fatigue, then headaches like you’ve never known. Jaw claudication and/or earache may also be a factor, and of course sight disturbances.

[PMRpro Ambassador in reply to barbpmr]

There are a few people on the forum who have had PMR for some years and then it turned into GCA. And sometimes it isn't obvious - they list all these "typical GCA symptoms" but in fact any one of them never appears in all patients. Even headache is found is about 40% of patients as a presenting symptom (why you went to the doctor) and still only 70% "ever". Persisting problems, difficulty reducing pred, feeling more unwell than usual - all signs to start asking questions.

[Nap1 in reply to PMRpro]

You’re amazing. The patience of a saint. I was going to say just go back on the prednisone. . One year will definitely not do it.

[Amkoffee]

I was forced off pred due to developing severe osteoporosis after 3 years of using it to treat my PMR. By that time I was down to about 7-9mg. When nothing else worked (Humire, Enbrel, methotrexate) I began taking Excedrin Migraine which contains aspirin, Tylenol and caffeine. This has helped ever so slightly however my inflammation markers remain quite high. And now I've developed adrenal insufficiency and am back on a low dose of steroid. I've also developed an ulcer which I'm sure is from the Excedrin.