Recovery time

Has any official data been collected regarding the number of people who recover from PMR in 2 years or less?

Also, Is there any way of evaluating the effect of prednisolone on the progression of PMR? Does it shorten the duration of the illness?

[Celtic PMRGCAuk volunteer]

Hi Pats

Kate is probably the best person to find the answers to your questions but I guess it may be difficult to gather data on those who recover in less than two years because the majority of those may have been purely under the care of their GPs who with textbook recoveries haven't felt the need to refer them on.

As there is no cure for PMR and Pred just controls the underlying inflammation that is causing the symptoms, I guess the answer might be that Pred doesn't shorten the duration.

But these are purely my personal thoughts.......what do I know!!!!

[Hidden in reply to Celtic]

Hi Celtic,

Yes, I know ,that theoretically, there is no cure for PMR as it is almost certainly an inherited condition. I believe that I have had many warning signs in the past when I have been in pain, incidentally the same pains I had when I developed full blown PMR, but usually one at a time. I truly believe that, if I had been sensible, and rested instead of dosing myself up with pain killers and carrying on regardless, I would still be in good health now. I think my adrenals could no longer cope and this illness flared big time.

Like all of us I'm sure, PMR was not part of my lifestyle plans, and boy, I want it back in bed where it belongs. Forewarned is forearmed as they say. I have learned to listen to my body now and I obey!

Yesterday I dropped the pred to 6.5mg after 3 weeks on 7mg. I fully expected trouble - aches and pains, but nothing. I feel good. I know that in a few weeks I'll be at the dreaded tipping point of 5mg. Will my adrenals cope? Who knows.

Pats.

[meggies]

Hi Pats, there have been studies looking at length of time on steroids which suggest between 50% & 75% are off steroids in 2 years. However, faster reduction time is associated with more 'flares' & an increased incidence of a 2nd bout of PMR later.

As Celtic says, steroids do not 'cure' PMR, they only suppress the inflammation which is causing the symptoms. PMR goes into remission when it 'decides' to!!

Margaret

[Hidden in reply to meggies]

Hi Margaret,

When on holiday last october in Wales, I had a big flare in my PMR. Luckilly for me the GP I saw at the local A&E was very knowledgable about the illness. He put me back up on a high dose again and explained in great detail the importance of very gradual reductions on the low doses. He also said, to my surprise, that in his opinion, it often helps to keep patients with PMR on a very low dose for years. As little as 1mg can stop the disease from flaring.

Maybe, even in a small dose, pred can be a back up to the adrenals which are a little worn out.

Pats.

[meggies in reply to Hidden]

Pat, I know of several people on really low doses indefinitely (and for some people they have to anyway as their own adrenal glands don't kick back in). If it was the case of 1mg a day for life or have another bad flare and start the reduction all over again, I would definitely choose the low manitenance dose. The 1mg is less than what your body woud be producing naturally anyway. That's my take on it.

I would not go from 7.5 to 5mg in one go - far above the 10% recommended reduction. Have you got 1mg tablets (unless on enteric coated - don't do those in 1mg). You can make all sorts of combinations - e.g.at moment I am on 13.5mg (2 x 5mg + 2.5 (half of a 5mg tab) + 1mg & 13mg (2 x5 mg + 3 x 1mg) on alternate days. Sorry if that sounds confusing. Also I drop every 4th day, then every 3rd day, 2nd etc rather than change from old to new dose overnight.

I know my reduction rate is slower than many people, but I only managed to get down to 17.5 from a 30mg start - big flare and had to go back up. I'd rather go slow than risk that again.

Margaret

[Hidden in reply to meggies]

Don't worry about that Margaret. It will be in half mgs until 5.5mg. then one day on 5, three or four on 5.5 and so on. making very gradual reductions over a period of weeks. My rheumy has made sure I have all three strengths of pills so I will be able to jiggle the dosage as my body needs. I am on 6.5mg now, been slowly reducing in half mg drops since 10mg.

Pats.

[Celtic PMRGCAuk volunteer]

Hi again Pats

Good to hear you managed a 0.5 drop yesterday with no kick-back so far. Hope you've got a quiet few days ahead whilst your body adjusts to the new dose and then hopefully all will be well. Hopefully with continued very small reductions your adrenals will start stepping back up slowly to their normal production.

After a severe flare at 3mgs, I had to go back up to 10 but was able to fairly quickly return back down to 5mgs - the point at which I knew things had started to go pear-shaped (I knew no better at the time rather than to do what I was told!) - and the rheumy then kept me there for many months, following which he said I could now start reducing at 1mg a month again. I said to myself no way Jose, having read Ragnar's story of success with slow tapering and small reductions. I reduced to 4.5 on only one day of the first week, then 2 days of the second week, 3 days of the third etc. Once at 4.5 I stayed there for a few weeks before using the same route to reach 4mgs. So although a painfully slow journey to zero Pred (blood tests remaining at normal), I feel that my body didn't notice the sneaky withdrawal of steroids plus that must have given my adrenals a big helping hand to get going again.

Did you parents/grandparents have PMR, Pat, which has led you to feel that it's an inherited condition?

[Hidden]

Hi Celtic,

Yes I'm almost certain my dad had this illness although he was never diagnosed even though he was on steroids for his pain.

I will certainly think about your way of beating a flare. I have already formed a cunning plan, but your's might be even better.

Pats

[Celtic PMRGCAuk volunteer]

Pats

Oh yes if the steroids worked for your Dad's pain, then it does sound like PMR doesn't it. No knowledge of it or any similar condition in either of my parents although I did hear rumours that my paternal grandmother was in a wheelchair and died at a relatively young age and that my father's sister in America lost her eyesight??????

It seems that "cunning plans" are the secret to beating this monster for many of us when our bodies become so used to these steroids that they don't like being without them, even methinks when the inflammation is resolved. Wish we had a magic eye that could see inside those adrenals!!

Hope things are still smooth at 6.5.

[Polywotsit PMRGCAuk team member]

Dear all

I wish I had a positive answer to the question about how many people recover in two years or less, but I don't think anybody has. That's because the only data that is collected for research purposes is the data collected by hospital consultants, and this is skewed because by definition, more people with 'non-typical' PMR or complications are likely to be referred to the hospitals than the so-called 'straightforward' ones who are treated only by their GPs. There are some consultants who would like all cases to be referred, just so that they could start to get a handle on the scale of the problem. But consultants who are looking for more work to land in their clinics are few and far between!

One study that may help us have a better idea has recently started in the Primary Care research team at Keele University. They are looking at the way in which GPs are dealing with new cases of PMR and what the trajectory of the illness is when it is treated in primary care.

K