How do you know when to stop prednisone

[SandyBoots]

I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA. I can't seem to get a straight answer from my Rheumatologist or G.P. thanks for your thoughts.

[DorsetLady PMRGCAuk volunteer]

Rule of thumb is to find the LOWEST dose that gives you same relief as the initial dose did. That could be 5mg, 2mg or even 0.5mg until such time as your PMR goes into remission.

Not sure how long you’ve had PMR, but as you’ve only been on forum since last year I doubt it very long. PMR can last anything between 2 to 6 years.

Inflammatory substances are produced every day you have the illness, and if you aren’t taking enough Pred to control them, they do built up day on day causing a flare.

If your symptoms are increasing it sounds as if you are now in that situation. So in effect below the dose you need to be on. If you return to previous dose you may catch the flare before it gets any worse. If not you may need more Pred for a while.

In response to your question - yes you should be pain free (from your PMR) before you stop Pred completely. If you aren’t it indicates you still have the disease.

This might explain your illness a little better - healthunlocked.com/pmrgcauk...

[SnazzyD]

First question is, have you been doing any extra or new activities? I’m not sure going up and down with Pred is desirable but sometimes it is necessary. So, rather than reduce too fast and up it when you feel bad, why not slow down and avoid the yo-yoing? The idea is to get to a dose that controls the symptoms. The trouble is with deciding pain is tolerable is that one can mentally diminish it because of one’s desire to get on with life or the usual, get off Pred. Be honest with yourself and be wary of pain quietly becoming the wallpaper rather than an occasional feature. At what dose were you comfortable?

[MaritimeMags]

Although diagnosed three years ago with PMR, I have never had the ‘traditional’ pain associated with PMR symptoms - these are, I believe, bilateral aching or pain usually in the hips and shoulders (can be severe).I am down to 2.5mg of Pred now and have asked my GP to refer me to a Rheumatologist. I seem to be able to do a lot more physically than a lot of PMR suffers who I read about on this site - like the lady who could not raise her arms above her head.Surely we all, in the course of our lives, gets aches and pains not necessarily caused by PMR - so, in my mind, if you stop taking Pred and do get pain, but not bilaterally, does that mean the pain is not necessarily caused by PMR?

[PMRpro Ambassador in reply to MaritimeMags]

If you never had pain - on what basis was the diagnosis of PMR made? To get to most diagnoses a set of criteria must be fulfilled and for some things, without them the diagnosis becomes something else in the context of a differential diagnosis.

[MaritimeMags in reply to PMRpro]

When I first went to the Doctors three years ago, I had alarming pain all over my body (not just shoulders and hips) which had happened very suddenly. The GP diagnosed PMR after taking blood tests and prescribed Pred. He asked me to reduce the dose every month or so. But the GPs have always suggested my dosage, depending on blood tests - not by me judging. Pain level didn’t really come into this.I did not know I had to have blood tests regularly until more recently, when someone suggested I look at this site. As I feel I do not really get the bad pain described by most of your contributors, I suggested to my Doctor it was time to seek more expert advice, after three years.

The amount of Pred I take is always according to what the Doctors sees from my blood tests, rather than from how I feel. I have been on 2.5mg for several months now - as suggested by GPs. I ache occasionally but possibly this is from age.

I am seeing a Rheumatologist in May (as requested by me). I understand that it’s not just CRP and ESR levels in bloods that confirm PMR so I often wondered if my GPs got the diagnose wrong.

I should probably have researched more about PMR when I was first diagnosed but I have only just stopped working (which kept me very occupied) and was content just to be guided by my GPs until now.

[PMRpro Ambassador in reply to MaritimeMags]

If you are at 2.5mg after 3 years, feel reasonably well and can live pretty well I would accept that happily. Prof Dasgupta says he keeps patients on 2-3mg indefinitely as it is a low safe dose and reduces the risk of relapses. I have to say - I'm a bit surprised you passed the triage for being referred and it raises suspicions that the rheumy may be a member of the "PMR only lasts for 2 years" club.

[DorsetLady PMRGCAuk volunteer in reply to MaritimeMags]

Yes we all get aches and pains that aren’t PMR related - and Pred does mask most of them, certainly on higher doses.

But if you’ve had PMR for some time, and come off Pred because you think/know your illness has gone into remission then you can usually tell what is a return of PMR and what is pain related to something else - ie osteoarthritis. As you imply PMR is usually bilateral, arthritis may be, but usually one particular joint is worse than the other.

I had GCA so was on very high doses of Pred, which obviously masked my OA pain, but as I got to low doses that pain returned - but I didn’t confuse it with GCA pain. Most people can tell the difference.

[PMRpro Ambassador]

" Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable?"

I think it depends on what the pain is - a very important part of managing PMR, whether with medication or other therapies, depends on knowing what your pain is. Is it part of the inflammation of PMR, is it myofascial pain syndrome or other muscle problems or is it osteoarthritis that has been at least partly relieved by the pred?

You have to bear in mind that you are never reducing relentlessly to zero - you are getting the inflammation under control at the start with a dose that is plenty to do that and then you are tapering slowly to find the lowest dose that does that as well as the starting dose did. It may be you are able to get to zero but there is no guarantee. Pain that was left then probably wasn't directly attributable to PMR.

You probably have arrived at your interim destination - 2mg is "your" dose for now. It is a very low dose, and a dose that Prof Dasgupta told us he often leaves patients on indefinitely because it reduces the incidence of relapses. It doesn't mean you won't get lower - just not yet. As low a dose as 1mg can be enough to keep the inflammation under wraps - but if the doctor then suggests it can't be doing anything and it isn't worth taking, the symptoms reappear within a few months. Pred has no effect on the underlying autoimmune condition and that continues in the background but the symptoms are relieved by removing the inflammation each day. Even a dripping tap fills a bucket eventually unless the tap is repaired. The a/i disorder will burn out eventually for almost all patients and then they no longer need pred - but it can take years to do so. For one in five, 20% of patients. it is in a year or so but 40% of patients still need some pred at 10 years, although it is usually a low dose and it may be for adrenal insufficiency problems.

The GCA problem is a different one - your immune system could change its malfunction and go from causing PMR to causing GCA - but nothing you do will influence that. It is pretty uncommon at later stages of PMR although it does happen and we have a few people on the forum it has happened to after some years of PMR. During the whole of the PMR journey it is something to be aware of - you need to know and recognise the signs if they appear, but there isn't any point worrying about something that may never happen.

[PMRnewbie2017]

One thing you could try would be some doses of Paracetamol or Ibuprofen. If your discomfort is relieved by, or is cured by, these meds then it's not PMR. A reduction of 1mg every month is quite fast at these low doses. You may have overshot your golden dose or not. Remember that steroid withdrawal and adrenal insufficiency can cause muscular aches too. I have been on Pred for 40 months now. (Currently at 4mg/3.5mg over 6 weeks). My muscles and tendons are now very prone to injury and I have aches and pains which aren't PMR but myofascial and due to tendon strain from decorating!!Please don't yoyo your doses at this point, but if the analgesics don't help, then you will have to increase your Pred dose to find your golden dose.

[kulina in reply to PMRnewbie2017]

My PMR symptoms started March 2015 so I'm starting my 6th year. I have been feeling great for about a year and I agree that a 1mg /month reduction seems too fast. I couldn't do it, .25 mg is the most I can reduce on the slow reduction method. When I rushed it, I relapsed. At this low dose, 3.25mg and reducing, I find that taking liquid (children's) Ibuprofen 50 mg before going to sleep helps. Without it, I wake up slightly stiff.

[GerriMc in reply to kulina]

Good tip with the liquid ibuprofen. I’m sometimes very stiff in the morning. I have no actually pain though and it doesn’t feel like pmr stiffness.

I couldn’t believe how much difference 1/2 a mg makes. I’m on 1 mg a day but took a couple of months to get from 1.5.

[SandyBoots]

Thank you all for your insightful comments filled with wisdom from experience. I think the moral of the story here is to listen intimately to what your body is telling you and respond contingently. It has been interesting trying to differentiate pain as I do have osteoarthritis in my neck, and back as well as sciatica, but xrays at the start of my PMR showed no arthritis in my hips. I was quite sure that I had PMR early on because of the bi lateral generalized pain in my shoulders, hips, thighs, and a general feeling of malaise. It just took me a while to get to a rheumatologist that concurred. I need to remember it is not a race to get off the prednisone, but a process to better understand your body.