Do I really have PMR?

[Nurse-162]

Do males respond faster to PMR treatment with Prednisone then females? I was diagnosed about 6 weeks ago and am at 12.5mg daily...feeling really good and no GCA symptoms. To me I seem to have a very mild case compared to a lot of testimonials I have read about. Are there various stages and if diagnosed early, could this resolve early. Trying to be optimistic....I am new here!

[SnazzyD]

Hello and welcome! So pleased your symptoms are well controlled on the right dose of Pred which is as it should be. Whilst you may be one of those whose autoimmune episode resolves quickly, in six weeks is very unlikely. Often people here have trouble due to other conditions, traumas, overdoing it, wrong diagnosis but mainly due to too fast a reduction when the body is not in remission. The Pred’s job is to deal with the inflammatory effect of the disease so if it is balanced well with your current level of PMR activity you can feel quite good. 12.5mg is still a significant dose of Pred so no conclusions can be drawn really, at this point. Go easy still and don’t be too hasty about dropping down too quickly. A slow reduction will help your body acclimatise to the withdrawal and if you do go past the level you currently need, you’ll know with more accuracy what that point was. So, it is good news certainly but cautious optimism are your watch words.

[Nurse-162 in reply to SnazzyD]

Thanks so much for your comment! I am now down to 10 mg and feeling the same as at 12.5mg. Is there a proper reduction analog? My GP started me at 30mg and provided me a schedule to get down to 20mg, but states to me to adjust as needed after that to get to the lowest dose....is this standard? I am not sure of the time frame to reduce and the amount to reduce each time.

Any education would be helpful to get to the lowest dose!

[SnazzyD in reply to Nurse-162]

You could try this.

healthunlocked.com/pmrgcauk...

I did 0.5mg every 2 weeks until I’d got to 10mg then 0.5mg eased in over 6-8 weeks. My last drop was from 2.5mg-2mg and took 14 weeks to ease in.

The idea is to make small steps to see if you’ve gone past the dose level you currently need.

[powerwalk]

How bad were you before Pred? At 12.5 I would have been pain free so go careful!

[PMRpro Ambassador]

Welcome - I do hope you have filled in your profile page as that helps us a great deal when we can see where you are (different countries have very different systems even if PMR is the same everywhere), what your dose is and how long you have been on pred.

Not necessarily at all - the response initially can be within hours for both men and women, I could move normally in less than 6 hours after taking 15mg.

However - don't get confused: managing the symtoms at above 12.5mg may happen in hours or an improvement should happen within a week at least. That is NOT the same thing as recovering from PMR. The longest and hardest part of the journey is still to come. You start with a dose that is likely to work for the majority of patients, 15-20mg is typical, and then you taper that dose to find the lowest dose that gives the same result. It is a form of titration of the dose but means you have some supporting evidence for the diagnosis and get relief far sooner than if you did it the other way round.

You may be great at 12.5 - but if you try to drop to 10mg (a standard reduction according to doctors) you might find it is a very different matter! In fact, even 1/2mg can be the difference between being OK and not. Every morning the underlying autoimmune disorder that causes the symptoms we call PMR churns out a new batch of inflammatory substances about 4-4.30am and the dose of pred you need is enough to combat that amount of inflammation. With luck, you can time the dose so that you have little morning stiffness, for some of us a single dose takes effect for over 24 hours, and so that you can live a pretty well normal life with some adjustments. Some people may have more inflammation and need more pred, others may have other problems that mean the pain is less well managed. Some have doctors who insist on unreasonable reduction approaches and that is very often a fool-proof way of developing a flare. Some need to continue working - and they typically need more pred and may have more problems.

The pred has not cured anything, it is mopping up the inflammation, but the actual disease process, an autoimmune disorder that causes your immune system to go haywire and attack your body tissues as "foreign" is chugging away in the background, making your muscles and other tissues intolerant of acute exercise. Anyone who tries to do too much is likely to experience sore muscles and ligaments. The key to managing PMR is taking pred and listening to your body, pacing and resting appropriately. Do that and you will have a reasonable experience of PMR, especially if you take close notice of what you can and can't do and set your limits sensibly.

Obviously the longer you have PMR the better you should get at it. I rarely have problems due to the PMR - but I have had it an exceptionally long time. People new to the game often struggle at first - the happier ones are the quick learners!! I don't know how much you or your doctor know about PMR - but there are doctors who think it will be done and dusted in a year or less. I fear not, less than 1 in 5 patients get off pred in under a year, a third are off pred by 2 years. But the median duration of PMR management with pred is 5.9 years and for a few it takes even longer.

medpagetoday.org/rheumatolo...

But for most they are down to well below 10mg in 18 months and are able to live pretty well. Not rushing at reductions like a bull in the proverbial china shop will help - every failed reduction step that pushes you back to a high dose makes it longer and harder to get to a low dose. And you are in the right place to get the right advice to avoid mistakes - but we can only tell you. You have to do the spadework.

[DorsetLady PMRGCAuk volunteer]

Welcome

As you are new have a look at this - healthunlocked.com/pmrgcauk...