Reactive PMR?

[Mai45]

Good morning, 1st post, but I've been reading regularly and found this forum so very helpful. I'm interested in a mention about 'reactive' in response to the post about diet rather than Pred.

10 years ago my brother died suddenly in April and in the July that year I contracted shingles. This year, my husband died suddenly in March. In July, whilst in the throes of buying, selling, downsizing and moving house, I came down with a flu like virus overnight, or at least that's what I thought. Assumed it was a physical reaction to everything, as that seemed to be my pattern of behaviour. By the next day I couldn't even lift the boxes I'd already packed. This just went on and on, some days better than others but the general trend was worse until I went to an osteopath. He helped a lot with muscle tension but told me he felt there was some underlying cause, he felt it was PMR, and sent me to my GP.

ESR and CRP markers weren't hugely raised so the debate (PMR / fibromyalgia / rheumatoid arthritis or simply a bad psychosomatic emotional reaction) went on for ages whilst I just got worse. I googled PMR, ticked every symptom bar raised blood markers.

Eventually put on 30mg Pred by a duty GP, and it was miraculous. Pain gone in an hour, felt omnipotent. My own GP said starter dose should have been 15mg, and I reduced from 30 to 25, then after 2 more weeks to 20, due to drop to 15 next week. I don't think she envisages immediate huge reductions once I reach 15mg. Felt wiped out for a day or two when I decreased so will make sure a Saturday in future. Now, like the gentleman this morning, I'm wondering if I am a fraud, because whilst I have odd side effects of Pred, I feel great as regards the pain. Is this just the 'reactive' PMR after all?

Whether it is or isn't, thank you for all the sound advice on this forum. It's helped me a lot just reading it. Apologies for a long screed.

[Charlie1boy]

Hi Mai45,

The best was to learn that you were almost immediately pain free. I guess the experienced ones on this forum will tell you that indicates PMR even though your markers were relatively low.

Yes, the general advice is for a 15mg starter dose, but I, too, was started at 30mg with the express purpose of getting the pain under control. I tapered down to 15mg in two months, but slowed down considerably thereafter.

You sound like you are a very busy person, so I would strongly advise that you take it easy, and give yourself plenty of rest! I'm sure I won't be the only one to tell you this.

Good luck, and you will, for sure, receive plenty of good advice from this forum.

[PMRpro Ambassador]

You are still at a dose that is well above the level where PMR should be managed well. The most recent recommendations are a starting dose in the range 12.5 to 25, 30mg if absolutely necessary. There seem to be a lot of doctors who think using a higher dose "hits it hard" - I don't think it makes that much difference, if the starter dose is above the dose you will need, you will get the miracle.

The way you feel as you reduce is "steroid withdrawal" - smaller steps will avoid that and I would suggest you go into two steps from 20 to 15. Top experts said years ago that no reduction should be more than 10% of the current dose and experience here says it does make a major difference.

From 15mg reductions at 1mg down to 10mg make far more sense - the slower you go the easier it is to identify the "right" dose - the dose that gives the same result as that starting on. But feeling as you do is normal - especially on the higher doses because that is the pred side-effect speaking!

I started on 15mg pred after 5 years of not being diagnosed because my markers were normal, In under 6 hours I went from stomping downstairs one step at a time hanging onto the handrail for dear life and crawling back up on hand and knees to "normal"! The rheumy didn't think it was PMR and only gave me a short taper. Within 6 hours of missing the first 5mg dose at the end of the taper I was in as much pain as before.

The "reactive" variety is one that appears after an infection usually and is usually gone within 6 months - so at present there is no way you could decide which it is anyway.

[Mai45 in reply to PMRpro]

Thank you both for such a quick response. Not that busy Charlie, just had to sell and move somewhere smaller pretty quickly - once this landed I was pretty well useless.

Thank you PMRpro, that all makes sense. I'll just wait and see.

[DorsetLady PMRGCAuk volunteer]

Hi,

Lots if us find that PMR and/or GCA appears after a period of stress - no matter whether physical or mental, and your story certainly fits both scenarios.

If you felt a bit grotty after your last reduction, you could try dropping twice at 2.5mg (with a week in between) rather than one of 5mg. Easier on the body - 20 to 15 is quite a big drop, some find it too much. If you have 5mg tablet, so long as they are uncoated, they can be cut.

Raised blood markers don't appear in loads of people, but the doctors seem to place so much credence on them - your symptoms are the key, and your reaction to the Pred.

[SheffieldJane]

I really admire your insight Mai45. I don't think we can separate mind/ emotions from the body. I am sorry that you had to endure such painful shocking losses in your life. Wishing you a peaceful, positive 2017.🌹

[Mai45]

Thank you all for your advice and good wishes, much appreciated, and I'll take it all on board. Had to smile at PMRpro's description of getting up and down stairs pre-Pred, that was me too.

I hope 2017 is kind to all of you.

[Roltuba]

Hello Mai45, just to say, don't be fooled into thinking you are back to 100%. I did, went back to trying too hard at gym exercises and reaped the reward of torn ligaments. You've still got PMR!

The trouble with the steroid is that it can mask other conditions too. There was a study, I think done by Colchester NHS trust a few years ago, which required all GPs who diagnosed PMR to refer their patients to the Rheumatology Dept. 50% of these diagnoses were wrong.

I too have found this forum enormously helpful in providing balanced advice.

All the best.

[Mai45]

Thanks Roltuba, I know you are right. I felt so good on the high dose I thought I could do anything, and it came as a real shock to find how tiring a simple thing like going for a walk could be. Working now on learning to relax, rest and pace myself. That isn't as easy as it sounds for most of us, used to working all our lives and feeling guilty if we just sit down with a book.

[PMRpro Ambassador in reply to Mai45]

You aren't alone there either - the majority of us were busy, up and at it people prior to PMR. I was at the gym everyday as well as running a translation business that required some long hours. Resting and pacing are as much part of the treatment of this illness as the pred - which manages the symptoms to allow a decent quality of life.