Polymyalgia

I was diagnosed last October with Polymyalgia and I'm following the usual steroid reduction route.  Every time I reduce the dose I have problems with flare ups.  Have had a really bad weekend, very painful joints and it was difficult to walk, so feel very tearful.  Have upped my dose to counter this.  Have very few blood tests at the hospital, and I'm not over confident in my rheumatologist.  I am in my early 50s and would like to hear from any similiar aged suffers, sick of being told I'm unusual to have this in my 50s !

 

PLZ ask for PT has helped me more than anything especially water PT.

CHEERS

HOPE

Hi Eva so sorry to hear you've had such a difficult weekend. Are you in the UK? If so it might be related to the hot and sticky weather.

I'm 55 and at about the same point along the road with this condition as you, I was diagnosed last September starting with 15mg of pred. I'm currently down to 3.5mg having had a few blips along the way. For the past month I've had outer knee pain but am not convinced it is the PMR so am persevering with my current dose.

I have never seen a rheumatologist or had regular blood tests, there is a well informed doctor at my surgery who I can see or speak to on the phone if I need to but am basically doing this by myself with help from the great info and posts on here.

I have managed to continue playing weekly netball but am struggling with the knee problem so am really looking forward to a break in August.

By the way I was also told it was unusual to get this at my age smile

Looks like a sub group forming! I too was diagnosed last October - I was 56 then. Could hardly walk, lift or move my arms then. The magic of pred worked for me and from a top dose of 30mg I am now on 3mg.

My GP is great, but my rheumy doesn't believe I have pmr.

I must admit I started to wonder if he was right as I have managed to reduce much more quickly than most - and am no where near experiencing the degree of symptoms I had before.

But I can feel them threatening........ And I think I have reached the limit of reduction maybe. I'll try one more, but if need be I will increase again.

My opinion is that every pmr sufferer will have a different experience of the condition and no one else knows how you feel.

You do what you need to do to live your life.

Find a health professional that understands that and ignore the others!

All the best - hang in there :-)

Hi there

Yep in my early 50's and my Dr suggested it was pmr as soon as she clapped eyes on me in October last year ... Seems a common time of year for flares? Anyway I had never heard of pmr at that point so I said 'hold the pred' and asked her for a rheumy consultation. The rheumy still doesn't want to confirm pmr! But have recently had a second opinion which did confirm it.

So I've not gone down the pred route yet as my flare died down with the help of ibu and aspirin which I've now come off. Still stiff sore tired but can operate as it were day to day. I am now looking at diet (gone gluten free, working on dairy, sugar etc) all which seems to be helping me - not claiming it will work for others of course.

All the best - I'm hoping for symptom free life eventually!!

I was first diagnosed at 51 in 1999; treated aprox. 2 years and abated.  Now recurance started again 6/13/14.  Just saw regular Internist on Friday 7/18/14.

Referred me to Rhumi again because of bipolar meds; does not want to prescribe new med without his expertise.  My regular doctor again expressed surprise and (doubt ?) that I had this at such an early age.  Said it usually is in those in 60's/70's.   I feel for you Eva Annie!

You don't say what the "usual steroid reduction route" is. But it sounds as if it is too fast for you - as it seems to be for very many patients. You aren't that unusual - I was barely 52 when it started and I know a lot of others in their 50s. If you visit the other UK PMR forums you will "meet" others who were also young at the start. You will find links here:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

The AVERAGE age of onset is said to be 73 - but since half of 80 year olds have it that requires quite a few younger people to being that average down. However - many of us think that many of the younger patients are misdiagnosed and labelled as menopausal, fibromyalgia, depression and a few other misnomers. 

Here is a slow reduction that is working for many. Go back to the last dose you were pain-free at and start again with this sort of reduction:

A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to, as it have done for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group starts new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%). I suspect their flares then come below 10mg as they do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX – we suspect those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

 

This reduction scheme is being used by quite a few members of the PMR/GCA UK forums (both of them) and the feedback to date has been good: people are being able to reduce without discomfort so they have stopped worrying about “flares” which probably also contributes to their well-being.

This has been really useful and the steroid reduction plan was actually something I was considering so it's nice to have a worked out plan that is tried and tested. I wish I'd found this forum months ago and I wish the medical profession listened to their patients better.  It literally took months before I was started on treatment as my consultant hadn't a clue, and my GP said it looked like PMR but he only ever saw patients in their 70s.  I'm sure I would have recovered faster if treatment hadn't been delayed so long.  GPS seem to hate you using the internet but they could learn alot from it themselves !