Mrs Diana Woon

[Dianapmr]

Have been suffering with PMR for 4 yrs 6 mths. Been on steroids on and off though PMR returns full on when I come off. Have come off for 6 weeks now and in lots of pain. Mostly affects tops of both my legs so is agony to stand from sitting position. Have tried everything, ie special diets, gluten free, even fasting as recommended by article in Times. Have occasionally had steroid injection from my rheumy. I am reborn for about a week but sadly it returns and is such a letdown. Am currently suffering nasty bout of bronchitis which seems to accentuate the PMR. Will wait till off antibiotics and see how I go. Must try increasing anti-inflammatory foods. Anyone noticed any decrease in pain with natural anti inflams?

[PMRpro Ambassador]

Most of us have tried most options at some time or other. The only thing that really works? Pred, at the right dose. Some people find that eating a diet with plenty of antiinflammatory foods helps manage at a slightly lower dose but I don't know anyone who finds diet alone manages PMR.

I'm afraid I think you have to accept that you still have the underlying cause of PMR and you have a choice: take the dose of pred you need or put up with the pain. If you keep stopping the pred and allowing the inflammation to build up again so you need to go back onto pred you are creating a yoyo situation where subsequent reductions in dose become harder. It is a common phenomenon. You also are probably increasing the total dose - which is exactly what you DON'T want to do - because you might be fine at 3mg for a long period, which is a very low dose with few risks, but when you stop and start you keep having to return to a high dose again. It soon adds up.

[Dianapmr in reply to PMRpro]

Yes, I know you're right. I have been on low dose for couple of years. The last year 3 to 1 mg. It is obviously not going to spontaneously disappear but I'll keep hoping it will. Have had short periods of feeling much better but currently in pain may be largely to being bed bound trying to recover from chest infection.

Wonderful to discover this site. Have felt totally alone with this disease for so long.

[PMRpro Ambassador in reply to Dianapmr]

There are 3 different forums for PMR and GCA in the UK, all with fairly international memberships! Where are you? One of the charities has a DVD called "You are not alone", developed to explain to patients, families and even doctors what these illnesses do to us. You are not alone.

I've had PMR for 12 years so far. I had 5 years without pred which was interesting and fairly painful. Last summer I felt really well, was at 4mg and tried lower because I really felt "different". Didn't work - total exhaustion so decided to stick with 5mg where I felt great! And now I have a good going flare. Ah well...

[Dianapmr in reply to PMRpro]

I live in Hampshire/Dorset. Would be interested to know of any forums.

Gosh 12 years is a long struggle though you had a five year respite.

[PMRpro Ambassador in reply to Dianapmr]

No, no respite! It was the first 5 years when it was beyond the wit of the GP to recognise textbook symptoms with no blood markers! I've been on pred for the last 6 years - steady reduction to 5mg over the last 3 1/2 years but I'm having a hiccup at the moment.

Whereabouts in Hampshire/Dorset? Is there a support group reasonably local to you here:

pmrgca.co.uk/groups/

the one in Chertsey is superb.

I think there are quite a few other people in the New Forest area though I can't remember any names - a few on the patient.info one:

patient.info/forums/discuss...

so a shout out there might find you an informal coffee group near you.

[Dianapmr in reply to PMRpro]

Thank you. I will try both these sites.

Yes, my GP let me go on without diagnosis, even though I had the typical high markers. After six months I asked to see a rheumy where I was diagnosed. Wonder if a late diagnosis prolongs the illness. Had a friend who was diagnosed immediately she had problems and was free of the disease after one year.

[PMRpro Ambassador in reply to Dianapmr]

It's poor that he didn't refer you earlier with high markers if he couldn't work out what it was. I don't know whether having it for a long time pre-diagnosis makes a difference. It shouldn't do in that the management with pred is just that, only management of the symptoms, and isn't touching the underlying autoimmune disorder that causes it all. You just feel worse for longer! I do hope it continues well for your friend - there is some evidence that people who have a short episode that resolves in a year or so are more likely to have a relapse later. I think it is Celtic on here who had undiagnosed PMR (bad enough to need a wheelchair and ambulance transport for hospital appointments) that eventually resolved only to then return in all its glory as GCA. They have a mind of their own - and it doesn't change even when you are on pred!

[Dianapmr in reply to PMRpro]

Oh dear, how depressing. Being left un diagnosed to wheelchair state is awful. I think there us an area of bafflement within the medical profession with people presenting with bad aches and pains. Know two people who have generalised bad aches and pains. One believes her symptoms commenced after insect bite abroad. Had several years on steroids, 3 years "recovered" and now back. Tho not diagnosed with pmr. Have read several accounts in papers of people in and out of hospital in an immobilised state with multitudes of drugs and say their recovery is due to becoming vegans. Who knows. I wonder if my illness is something to do with a deep dog bite I received in late 2010 in France falling ill in mid 2011.

I have had so many reasons to visit my GP over last 4+ years - swollen painful ankles, swollen knee, kaput wrist, facial shingles, etc etc. my health before onset was goodl. Used to swim 60 lengths most days and walk dog miles. My GP only ever recommends higher doses of preds my rheumy the same. I do know it is a most depressing and painful illness. It is a great test on one's optimism! Lots of research on this illness is needed. So many people are suffering greatly.

[HeronNS in reply to Dianapmr]

I doubt if long time undiagnosed makes any difference, except that your general fitness might have declined. I certainly had PMR for over a year and may have had a self-limiting occurrence of it some years earlier, now that I know what the symptoms are. I have been so far successfully reducing my pred dose to a fairly low level after less than a year of treatment. Because I still have underlying PMR niggles I do not expect to be completely off pred for some time, just still aiming for that lowest possible dose using dead slow method, accompanied by other strategies to reduce inflammation.

[Dianapmr in reply to HeronNS]

How bad was your PMR at its worst. Very good if in just one year you have mostly overcome PMR. What dose did you start at and what are you at now? Have you changed your lifestyle or diet? What strategies have you used to reduce inflammation.

[HeronNS in reply to Dianapmr]

Hi Dianapmr. I'd been having trouble doing things like standing after being seated for even a few minutes, climbing in and out of bathtub, getting out of bed, getting up off floor after doing my exercises, turning my head enough to see out back window of car when reversing. that kind of thing. What got me to a new doctor and a diagnosis (June '15) was an apparent calamitous weight loss, plus beginning to lose my ability to do long-standing physio exercises. I responded very quickly to 15 mg. After reducing to 9, and having to go back up to 10, I found the UK forums, learned about dead slow method of tapering, and have been following that. I also got a diagnosis of osteoporosis (actually osteopenia) which led me to improve my already healthy diet, and elevated blood sugar nudged me towards giving up nearly all simple, refined carbs. I'm also getting low intensity light therapy (google: bioflex toronto kahn) which I think has been helping me as I taper. I keep thinking I'll have to slow down the taper as every time I start a reduction I feel the difference, but by the end of the dead slow taper I'm back to where I was at the beginning so that has, so far, been good. The only specific "anti-inflammatory" thing I've introduced is a daily mug of ginger tea (grated fresh ginger root). I did have the good fortune of starting from a place of relatively good health so I've not had to contend with pre-existing serious chronic illness on top of the PMR. I'm currently taking 6 mg. I don't think I've "overcome PMR". What I'm trying to do is get my pred dose down as low as I can as I seem prone to developing some of the not good side effects. Oh, and a change in lifestyle - actively avoiding stress!