low dosage pred

[Ferddie]

I am new to this forum and have just read PMRpro Vounteer's comments on this subject. I would appreciate his/her views on my experience.

I have had 5 courses of prednisolone in the past 10 years each time reducing to zero.

2006 PMR - started on 20mg in January gradually reduced to Zero in November;

2007 Giant Cell Arteritis - started on 20mg in March, reduced to zero in September:

2008 In August had painful right shoulder and right leg - referred for physiotherapy and had cortisone injection in shoulder. December feeling very lethargic and prescribed 20mg pred. reducing to zero in September 2009. During this period I was continuing to have shoulder and leg pains and difficulties getting out of bed - treated by painkillers, muscle relaxants, physiotherapy, cortisone injections. November 2009 x-ray of shoulder and hip showed that there was no soft tissue in the joints. ESR was 95. Started on 30mg pred. Had very successful hip replacement operation. Wouldn't operate on shoulder as pain not severe enough. Pred stopped in December 2013. May 2014 read that treatment for joint problems is vitamins C and D Zinc and Manganese. Started taking multivitamin tablets daily; now pain free and strength returning to arm. GP said should consider having a basic therapeutic level of Pred. in view of history of PMR but he retired before setting this up. New GP reduced it to zero in August 2015.

2015 September more muscle pain and lethargy. Started again on 20mg.

Other relevant information. Had a fall in March resulting in a wedge fracture of a disc. Put on medication for osteoporosis; bone density test showed bones fine and medication stopped.

Since 2002 have been under the care of a haematologist for paraprotenemia with blood test at least every 6 months - no problems detected.

I am 91.

What level of Pred. should I tell my GP I should be taking to, hopefully, avoid a recurrence?

Does PMR tend to affect men and women differently?

[PMRpro Ambassador]

First of all, no-one on the forum is in a position to say what specific dose anyone should be taking, that remains up to your GP/specialist. All of us comment on the basis of the experiences we and others have had in the past as patients. I make comments on the basis of the medical science aspects and 6 years of personal experience both with PMR/GCA and with the support groups and hundreds of other members!

However - I would say that you have been wizzing down and back up those doses of pred. When you get into a yo-yo situation with dose levels it seems to make subsequent reductions more difficult - whether it is your body gets too used to the drug no-one knows. Generally it is said that PMR will go into remission in a couple of years - and you have never been given even that long so I would surmise that you have been rushed down your dose and then the underlying autoimmune cause of the illness has still been active so the symptoms returned very soon. Your 2007 experience of "GCA" disappearing in 6 months after starting on 20mg I simply don't believe - GCA typically requires more than 20mg, that is a PMR starting dose, and neither of them just disappear into the ether that fast - if only they did! All through that period you were displaying symptoms of active PMR - which they managed in other ways rather than using a low to moderate dose of pred which is crazy!

The dose you need long term is the dose that manages the symptoms as well as the current 20mg and no-one can say in advance what it will be. Once your symptoms and the ESR reading are levelled out you should start reducing the dose in small steps - for best results, preferably not more than 2mg at a time to start with, by nearing 10mg it should be 1mg steps. Below 10mg 1/2mg reductions are even better. You stick at each dose for a month - and when you find a dose where the symptoms start to reappear you go straight back to the previous dose where you felt well. And stay there for some time.

Yes, PMR does seem to affect men and women differently, men seem to get off relatively lightly in general - but that is a generalisation. Some men have a rough time too. They do seem to be able to do more exercise - maybe that is something to do with muscle bulk.

Get your new GP to read this paper (if they won't, ask another one):

rcpe.ac.uk/sites/default/fi...

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis" by Quick and Kirwan

which provides a clear means of management of both with suggested reduction schemes. For PMR it is spread over 2 years and for GCA over about 2 1/2 years - but for both the scheme is not carved in stone, if symptoms return then you stop the reduction, find a dose that gets rid of the symptoms and wait a bit before trying again.

Many of us on the forums have found that smaller steps work even better - but anything that is slower and steadier than what you have been subjected to in the last 10 years can only be better. If your bone density is good enough for them to take you off any medication for that there is little need for them to worry about that as a long term side effect which is their usual cause for panic.

You don't say what it was, but it sounds as if the dose you were on when your previous GP retired might be about where you should be - it was reducing to zero that led to the flare between August and September.

Do let us know how you get on.

[babssara in reply to PMRpro]

Hi PMRpro. Great advice as usual. (I have put your link on my reading list!!!)

Does all this ring any bell? Similar situation, didn't know which medic to believe, or take advice from as always seemed to be conflicting. But with your help, and numerous great tips and advice from others in the community, I am now getting there - the light has gone on. Thanks again everyone. Babs x

[babssara in reply to PMRpro]

Hi, PMRpro. Great sounding advice as usual. (Does this ring any bells?).

Hi Ferrdie, my response to you:

I was in the same position as you not too long ago. Didn't know what I was doing, not really getting anywhere. I was told by one GP Oh your symptoms are this so take this. If I saw another GP he would contradict by saying he thinks its so and so, so stop what your taking and take this instead. In the meantime I was in the middle. Not having any say in my treatment, side effects and no real remedy or control of pain management.

But. thanks to the advice, support, information and tips (not to mention "virtual gentle hugs"), given by PMRpro (and other wonderful people in this community), I have been provided with the help and advice and, armed with this new knowledge and understanding,, have gained the confidence to ensure I am a participant in all aspects of my illness and am now party to any medication decisions. Which has really, really helped me over the past 3 months.

I really hope that you start to get some answers soon to your current symptoms and feel better quickly. Take carex

[Ferddie in reply to PMRpro]

Thanks for al that information. I have printed copies of your reply and the paper from Quick and Kirwan so that I can understand the subject much better than I have hitherto and plan my approach to my GP.

[Ferddie in reply to PMRpro]

I saw my new GP yesterday on her return from holiday. I pointed out that the five courses of Pred. I have had all lasted around one year and not the two years as quoted on the NHS Choices website and gave her a copy of the paper from the journal of the RCPE. She has put me on the 104 week programme detailed in Table 2. This is to treat my sixth outbreak which I estimate started while on a tour of China in August. I initially thought my aches and tiredness was due to the intensity of the tour and on my return home, due to jet lag. In September, a blood test showed my ESR to be 37 and I was started on 20mg Pred.

With reference to my hip replacement operation in 2010, I had been put on a course of Pred. in Dec.2008 starting on 20mg and finishing in Sept 2009 despite my ESR in August being 37. ( I only obtained my ESR readings for 2009 last week.) After finishing the Pred. my symptoms of PMR continued - difficulty getting out bed, etc. - and I was put on painkillers and muscle relaxant. I was referred for physiotherapy but I had to wait 6 weeks for an appointment. On my first appointment I was told I needed x-rays on my shoulder and hip. These showed there was no soft tissue in the joints and resulted in the hip replacement. There was no damage to the actual bone.

From the entry ion Wikipedia for PMR I found a reference to a paper in an American journal that in PMR, the white blood cells attack the soft tissue'