I have PMR and have been at same level of Prednisone for over 9 months. Should I consider having my

Bones, joints and muscles
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I have been taking Prednisone for 25 months for PMR. My GP (in Canada) doesn't know much about PMR and rushed me to get off Pred so I went from 20 mg to zero in 11 months. Of course I relapsed and luckily discovered this forum. I restarted at 10 mgs and quite easily but carefully came down to 4 1/2 mgs and have been at this level for over 9 months. I've tried several times to reduce to 4 using Eileen's slow method but about half way along the aches start up. 

Currently i I see my GP about every 6 months for my Pred prescription renewal and CRP blood test and I will see him soon. Should I be asking him to refer me to someone who can check my adrenals?

And if it is an adrenal issue, would that mean I would take a second medication or just stay on Pred for the long term?

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No, I doubt you need to bother - I have been taking pred for PMR for over 5 years and am also stuck at 4mg, 3mg and the aches return. You aren't being able to reduce below where you are because you have very successfully identified the lowest dose that manages your symptoms. The underlying autoimmune disorder that is causing the PMR symptoms is still active, it hasn't burnt out and gone into remission yet. About a quarter of patients seem able to get off pred in a couple of years or less, they are at a higher risk of relapse. For half it takes up to 4 to 6 years and the rest even longer. That fits fairly well with what I see on the forums I think.

The symptoms of adrenal dysfunction are a bit different - as long as the problems you are having are the same as the PMR was initially there isn't much to worry about. However, I would like to think your GP is doing a bit more than just CRP when he does a blood test - like electrolytes and all the rest of the usual stuff. My GP does that once a year, it's a list a mile long! 

If it were adrenal dysfunction then how it would be dealt with would depend on the doctor - Nefret on here is on 5mg pred for life. Other doctors might use hydrocortisone but I suspect that means more than a single dose per day. 

Five mgs is a low dose, the associated side effects are minor. I had decided if I got to 5 I would be happy to stay there. I tried again and got to 4mg. Obviously that is better for me so I stick there. I have no doubt you will try every few months to do that other bit - but given you are in Canada I'd wait for spring and a bit more warmth before another attempt!

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I am a newbie here, always looking for info.

You mentioned "then the aches start up." I am at 15 mg. for a month, having been started at 20 mg. at time of diagnosis about a week-and-a-half ago. I have gotten great relief from the Prednisone, but ALL the aches (arms, mostly) have not totally left me.

When we are thinking/talking about reduction of Prednisone, does it mean we are looking to have NO pain at all, or is a modest amount of pain OK to tolerate without raising the Prednisone dose. It's not clear to me...........At the moment I am quite content to tolerate the amount of pain I have, with no adjustment whatever.

Thanks, Mrs. CJ and others, for your help--

Thanks, ever

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"does it mean we are looking to have NO pain at all, or is a modest amount of pain OK to tolerate"

It all depends. Some people become almost pain-free when on pred, other are never pain-free, however high their dose is. The aim is to see a 70% global improvement in symptoms within a week or so with a dose of 15-20mg to start with. Occasionally people need slightly more to get a good result - usually because they weigh more.

Once the symptoms are as under control as it seems they are going to be, then you start to reduce the dose very slowly to find the lowest dose that will manage the symptoms. That's what MrsCJ has done - found that the remaining symptoms remain similar in intensity all the way down to 5mg. Four and a half still works - but 4mg doesn't, the symptoms get a bit worse.

The way I felt at 15mg I would have stayed there too - but it isn't a good idea. The lower the dose that works well, the better for you long term.

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Thanks a lot, Eileen! Barbara

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Thank you so much for your advice. 

My doctor is not at all knowledgeable about PMR but there is a shortage of GPs here so it's impossible to see a different one. I could maybe talk him into referring me to a rheumatologist but am worried I would go from the frying pan into the fire.......and end up with someone trying to tell me I have something else and need different meds, or that I need to get off my Pred quickly. I'm really not sure what to do about this. With my GP he renews my Pred prescription and then I'm on my own. 

Could you you advise a bit more about blood tests. In Oct 2013 I had the usual blood tests that are common for an annual physical (basic blood tests and TSH for thyroid) plus a CRP, which was 2 (<5 is normal).  My July 2014 CRP was 3.8. 

 I've asked several times for a Vit D test but my GP always said I didnt meet the criteria. He finally said he could order me one if I paid for it so I did - $65.  Normal range is 75-150 nmol/L and mine was at 63. My GP said that was ok and to take around 2,000 Vit D a day. 

I am on a schedule for bone density scans and last one, thanks to the Pred, showed osteopenia. So I take 1,200 mg of calcium and 600 magnesium a day. 

It sounds like I should be getting other blood tests?  Maybe a rheumatologist would monitor my bloods better?

I really appreciate the information on this forum!

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I think Eileen has explained this well. I do have a normal level of aches that rarely go away but I have always had this and it's really ok compared to the horrible stiffness and pain I was in when I was diagnosed (and immediately diagnosed by a walk in clinic doctor which I am very grateful about). 

However when I am reducing I am very aware of my aches increasing so that is what I was referring to above. My goal is to be on a lower dose but to not increase my ache level. As you will probably read on this forum, it's not healthy for us to have more aches because that means there is increased inflammation in our bodies. 

I get fewer side effects on lower doses of Pred so that is why I keep trying to reduce and I give it a go about every 4-6 weeks.   If you are familiar with Eileen's slow reduction plan, I'm ok at about 4 days old/1 day new so next time I'm reducing I may stop there for awhile and see if I can maintain at that level. 

This is is a wonderful forum - I read it very frequently and learn so much. 

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i imagine the annual physical covered most of what you need - that isn't always common in the UK which is why I mentioned it. We get one done here in Italy but had never had anything like it before. If there is anything suspicious or if you have other symptoms - you might need something checked but if you are fine, annually is OK. Though it must be due again if the last time was Oct 2013. No, the tests I meant are the basic blood tests.

If you have a GP who doesn't interfere too much and you have managed so well to get down to 5mg-ish then the last thing you need is a rheumy messing you up! Your CRP was OK, your vit D is not bad at all - what time of year was it done? It is highest in September and lowest in May as you have stored up vit D during the summer and used it up over the winter.

You have had as much as most of us get and i wouldn't worry about other blood tests for the PMR. You aren't getting lower at present because you have arrived at your "maintenance" dose, the lowest dose that manages the symptoms. It doesn't mean you won't get lower, it just means "not yet". Come the spring you may manage 4mg. Anything below 7mg is a physiological dose, the side effects are minimal and you are safe to stay there as long as you need, it doesn't matter whether your adrenals aren't quite a spring chicken as you'd like. Some doctors say they are happy for patients to be at this sort of dose for a long time.

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My Vit D test was in Oct 2013. 

I'm assuming that your blood test test is "a mile long" because you have other health issues because my list is pretty short.  Under Hematology there are 9 tests, under Differential there are 5 and under General Chemistry there are 7. These may not make much sense to you guys in the UK. There were more tests when I had an endoscopy to check out things like celiac and helicobacter infection, etc and everything has always been ok except for the Vit D showing a bit low. 

I'm glad to see you say I don't need a rheumy because that agrees to my thinking about this....but of course then I got second guessing myself and wondering if my GP was right to do this....was having arguements back and forth in my PMR-clouded mind!

 I was thinking that if he insists on sending me to a specialist that I should push for an endocrinologist instead of a rheumy with my arguement being we should check my adrenals. Would this be something I could use to pacify my GP.....if it comes to me going somewhere?  I cannot risk a huge fight with my GP because it is pretty impossible to change GPs in my city - there is a shortage and I would end up having to use a drop in clinic. 

I just went for a lovely walk.  Lots of signs of spring...some protected primroses are blooming and flower bulb greenery is appearing. Too bad the sunshine doesn't do much for Vit D production....but it does feel good!

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I do have the odd health issue - but that isn't why the list is long, by my standards yours is as long! I suspect your haematology list is longer than mine since a differential is under that here. Each individual test is listed on ours - and I'm not in the UK either.

No, I wouldn't think you need to see an endocrinologist unless the symptoms you get on reducing below where you are now are different from PMR symptoms and suggestive of adrenal insufficiency. If you try to reduce below 5mg and PMR symptoms return - it is quite simple, the aunderlying autoimmune disorder is still active. You need whatever dose manages the symptoms. If you reduce below 5mg and get other symptoms then you probably need to first of all reduce more slowly and see if that helps (see my "Dead slow and nearly stop reduction plan"wink. Only then would it be any point seeing an endocrinologist - but in the UK a GP could organise a synacthen test, which has to be interpreted differently if the patient is still on pred and can be done at any dose from 10mg down though the lower the better to make it meaningful. 

I'd wait and see - and cross bridges when you get to them! And 5mg is a low dose, suitable to hang around at for a few months at least - recommended by some of the top rheumies in the UK to make the subsequent reduction easier, it allows the body to catch up, not just the adrenals, all the other hormonal bits.

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EileenH

I address this to you, Eileen, because of your knowledge base, but I think the subject is of interest to many who participate on this website. It is a question about getting to the lower doses of prednisone and when do your own adrenal glands begin to start functioning. There are tests that can be done that will show if your hypothalamic-pituitary-adrenal axis (HPAA) is functioning. Not all doctors will order them, they cost money, who should have them done etc. Normal output of cortisol from the adrenals is between 8-12 mg/m2/day.  Many people seem to have problems getting below 10 mg of prednisone and there is a long pause in the decrease of prednisone in the University of Bristol protocol by Quick and Kirwan at 10 mg.  I assume that this is because people with PMR are beginning to take a daily dose of prednisone that no longer meets their daily needs. They either have a flare up of a smoldering PMR or they suffer from and inadequate quantity of cortisol/prednisone. Some of the symptoms of the former(PMR) are similar to those of the latter (cortisol deficit). In both situations one probably should increase temporarily the prednisone dose.  At what dosage of oral prednisone does the HPAA start to function? I do not know. Do you? Once your prednisone dose gets below the trigger level for the HPAA to start to function, it still takes a long time ( 6-12 months) for the HPAA to function normally. Until your adrenals begin to function and produce cortisol that can get into your system and deal with stress, you at the whims of stressful situations causing pain and discomfort unless you increase your prednisone dose. Are my thoughts correct?

Charlie44664

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I think that to a great extent your thoughts are valid, yes. But it isn't quite a simple as it might appear.

The received wisdom is that the adrenals must start to produce some cortisol at about 7 or 8mg in most patients - that is what is described as the physiological dose, what the body produces. However, everyone is different in how their body responds to pred - or the lack of it, so there will be a bit of variation. In addition, cortisol is produced in chunks rather than smoothly trickling into the system - and there will be a bit of variation depending on the time of day you take your pred and the stresses exerted on your body. In my experience, the effect of stress when the body is still sorting itself out is one that doesn't match what you might expect. It seemed to me to happen earlier than you would think and was triggered by a stressful morning trying to deal with call centres and the bank when trying to buy a property!!!!

I don't think the adrenals ever really get into a status where they don't work at all, I think what happens is that the incredibly complex network of hormones and organs (hypothalamus, pituitary, adrenals, thyroid etc) oscilllates in a search for where it is in the right place for everything to work properly. This involves different hormones for men and women - and that partly at least accounts for the great differences we see in how men and women are able to get through PMR and GCA. An endocinologist said much the same.

The slower you reduce at these lower doses, the less dramatic the oscillations are and the less unpleasant patients find it all. But doctors come up with ideas like "the PMR is gone, reduce quickly" - when they CANNOT know it has gone.

​In reductions I don't think the mix-up is between PMR flaring and lack of cortisol from the adrenals - the symptoms are different. What is similar is the body's reaction to the pred being taken away - and that isn't quite the same and can happen even at doses well above the physiological dose. 

In most people, cortisol is being produced - just not entirely reliably, and it isn't because your adrenals aren't functioning, it is because the whole system is a bit wobbly. In patients where the PMR is actually in remission then the result is struggling to deal with a stressful situation with tearfulness, headache, wobbliness - typical stress reactions. If the PMR is still active you will have a flare of symptoms.

It's horribly complicated, it is something an endocrinologist might be able to clarify - except they don't see the rheumatology side. Anecdotally though, the slower you reduce - and I don't mean only in time but in step size - the less problems crop up. 

 

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Thank you for your comments.The human body is very complicated with never ending subtities. PMR certainly brings out a nujmber of them.

I am glad I came upon this forum. It provides good information and support.

Charlie44664

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Had my doctor appt and he wasn't there so had to see the locum. She was pretty young but tried to be helpful with advice. She said I had to get off Pred asap and listed a few reasons why (lowered immune system, osteoporosis) and she said most people with PMR only needed Pred for a year.  Why aren't our doctors getting better training?!  I told her that half of people with PMR need Pred for 4-6 years - but I don't think she believed me. 

Anyway, I got my prescription renewal and can get on with living with PMR on my own.....and with the wonderful help of Eileen, Mrs O and other sharing people on this great forum. 

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"Most people with PMR need pred for a year" - we do do we? I'm going for my dinner - I can feel my BP rising...