Now what??

[ponai]

I last wrote 4 years ago when I thought I was in the end game with PMR- after all, it had been 2 years! I've been plodding along since then, always a bit stiff, having to reduce and pace activity, but managing and very grateful for this forum. By this summer I was down to 2mg pred again and still quite stiff, but stable. A few weeks ago- after my 5th covid jab, change in the weather etc, I suddenly got proper pain in hands and arms, couldn't even manage a small step into the garden. I upped the pred to 7, and the pain subsided to stiffness again, though the hands still fizz and are uncomfortable if I use them too much. I was worried about having to go through the adrenal stage again, so lowered to 4, and things are the same, but not worse. I'm envious of people who find pred makes them really well- it never has for me. So should I up it a lot in hopes of the miracle, or accept that the current level is the best I can hope for and I might as well go back to 2? And if I don't absorb pred as well as some do, does that mean it also isn't doing as much damage? I prob can only find out by trying... I have no problem- or help- from my GP who leaves it up to me, with the occasional blood test or Dexa scan. I'm going on a trip involving airports to see children in a few weeks, and would so like to engineer an improvement. It is very useful hearing of other people's experiences.

[PMRpro Ambassador]

The variation in the absorption of pred is accounted for in the titration of the dose, the tapering process to find the lowest effective dose for YOU.

The adverse effects vary from person to person and even drug to drug. And are often overstated. I have had no identifiable problems on pred - whether -nisone or -nisolone. Methyl prednisolone (Medrol) was a whole different world - it was awful! I had a black beard, gained weight, was hungry and bad tempered - and I needed a higher and higher dose. When I was switched from methyl pred to prednisone I dropped overnight from 20mg methyl pred to 15mg pred - and had the same relief of symptoms I had had that very first day.

I've been on pred for over thirteen years, I have no loss of bone density, no sign of diabetes, I gained weight with PMR, more with Medrol, I lost it again while on over 10mg pred. I don't get more infections, healing and bruising hadn't been too bad until the last 3 years when I was consistently above 15mg., both have improved greatly since I have been able to reduce the dose.

[jinasc]

Some people with auto-immune illnesses are on pred for life.

How I wish that Medics would not say '2years'. PMR comes when it wants and goes when it wants. We just have to manage it to make us as comfortable as possible until it decides "I am off." Not cured, there is none currently - remission. If I had a £ for everyone that was told "2 years and you will be off pred" I would be very rich.

When I was diagnosed my Consultant told me I could possibly be on 5mg for life.

I asked the reason why - he told me that as I aged and as the adrenal glands had been stopped in their tracks, it could be that they would not become fully functional and I would need that low dose.

4 and a bit years on pred and down to 4mg and he sent me off to see an Endocrinologist for a Synacthen test. That showed the adrenals were up and working. So I slowly dropped to 1mg and took the last 1mg on a New Years Eve. The endo guy told me it could take a couple of years for them to come up to speed.

So I would ask your GP for a short cortisol test and see what happens.

BTW: Yo yoing pred does you no good, go back to where you were comfortable and then follow one of the tapering plans after a month - dropping perhaps 0. 5mg at a time.

[ponai in reply to jinasc]

Though maybe it makes the first few years easier if you think it might soon be over? And if 5yrs 8 months is average, someone has to be longer... The odds are in favour of it burning out, but it does feel a little roulettish.

A sunny day and some inactivity and I'm improving... I think I'll stick at 4 for now and hope the downturn will pass. There are too many variables to be sure what to do. Thank you- and to PMR pro- for the input.

[PMRpro Ambassador in reply to ponai]

I don't know - many people appear on the forum after everything going pear-shaped after a taper that would work in 2 years if it DID burn out in that time. Doctors often only work on the 2 year timescale. it is the patient's fault when it doesn't work and they can become quite unpleasant about it. The realistic suggestion that it MIGHT be gone in 2 years but often lasts longer would be more sensible.

[MiniSpec]

To those who've written that PMR can be gone in 2 years I can only say "In my dreams!"

I've had PMR for over 13 years and been on Prednisolone for more than 12 years so far. I started on 15mg and although the road has been a bit bumpy (two bouts of GCA so far!) I'm currently on 3mg and intending to taper further over the next six months.

I found that although Pred helps to keep my joints from stiffening up, I have to take strong painkillers every day to allow me to do anything at all other than sit in a chair and stare at the wall, or nap the day away. Having said that, I do try to get out and about and keep up something of an active lifestyle. But I have found as I've got older (I'm now 72) that if I have an active day, I have to take at least one day, and usually two days, to recover before I can do anything active again.

Failure to rest up for at least a day after any activity leads to increasing pain and discomfort until I'm virtually bed-ridden. So I've learned to go with what my body tells me it can take, and don't try to push it too hard.

[EdithWales]

You have had good advice on here. I do sympathise with being given wrong information. I was told by this bright young Rheumatologist that “ in 2 years you will be cured” also when she was dumping me because I was a private patient “ you won’t need a rheumatologist anymore” Another consultant friend did say some people never get off them but I didn’t believe her convinced that the Rheumatologist knew best.

8 and a half years later I am still swallowing my little red pills, however other than bruising at anything I get too near I am fine. I have tried multiple times to taper unsuccessfully and am about to give it another go. I feel very relaxed about it.

It’s just such a shame we are given wrong information, it should be about getting on with our lives, if it’s not possible it isn’t a disaster.

Take care.