PMR Questions: Control, Limitations, Flare, GCA, Misdiagnosis

[RNRN]

1)What constitutes control of PMR?

a.Symptoms on control?

b.Pain?

2)Are there limitations during control

a.Age related?

b.Symptom related

3)What is flare?

4)What are the GCA symptoms that appear for anyone in control of PMR?

a.Taking Prednisone makes GCA diagnosis difficult

5)Since my SED has been normal and only the CRP that has been marginally elevated I am still concerned about a misdiagnosis. Kate Gilbert’s book states that 70% of PMR patients are diagnosed with cancer with in the first 6 months and then drops which implies a misdiagnosis. What are the symptoms to be looking for?

[polkadotcom]

RNRN, I'm not sure quite how to answer you. The only current control for PMR is steroids (Prednisolone) (Pred) and the only limitations are the individual patients' own, both their reactions to the condition and their reaction to the steroids. There is never going to be a one-size-fits-all answer.

There are classic symptoms of PMR and often raised inflammation markers are found in blood tests, but about 20% of patients never have raised markers. I am one of them.

A flare up occurs when the amount of steroids is not enough to contain the inflammation. It very often happens when patients are either reducing the steroid dose too quickly or by too much in one reduction.

I don't think taking steroids makes a GCA diagnosis difficult. If you have PMR and are on steroids then you would (or should) be more aware of the GCA symptoms than those who haven't got PMR.

I feel that you should read Kate's book again. If English is not your first language then perhaps you can find someone to help explain the different sections in the book.

[RNRN in reply to polkadotcom]

sorry I am a native English speaker but maybe it is my engineering background that makes me lousy at it. Kate's book says she always had pain even on Prednis(ol)one. I fortunately do not. Although in the morning for awhile I may and my wrists and hands seem to bother me on some mornings. Not sure but this is when I get on the treadmill before bed time. I find I cannot maintain my weight unless I do - curbing the appetite is tough. I eat too much when I start and the signal to stop does not occur until I have and exercise helps reduce that feeling of having eaten too much when I have so I feel better.

[polkadotcom in reply to RNRN]

I've always had pain, steroids brought it down enough to have some quality of life. You are one of the lucky ones who are pain-free. When my journey was at the point you are now even the thought of a treadmill would have made me cry. I gained a lot of weight in a very short time, but the food craving disappeared after a few weeks - I was lucky there.

Never, in all the years I have been dealing with PMR have I found anyone who could be described as a couch potato. We are - or were - all busy, busy people who could multi-task while juggling a job with housekeeping and 'me' time (in my case, my hobby was dancing. which requires a lot of physical energy).

I was diagnosed at age 57, having had a very gradual onset, in years, not months. It's the hardest to diagnose as in my case it had to be done on symptoms alone, but I was very lucky at that point as I was referred to a rheumatologist who knew a lot about PMR. Then it was very unusual to be diagnosed with PMR if you were over age 65/70. Thank heavens things have moved on a lot since then.

[PMRpro Ambassador in reply to polkadotcom]

Over 65/70???? Under surely?

[polkadotcom in reply to PMRpro]

Quite right - a very senior moment!

[PMRpro Ambassador]

1) Management of PMR is restricted to reduction of inflammation using pred and as a result there is an improvement in pain and stiffness.

2) Don't understand what you are asking - if you take enough pred, the pain is relieved due to reduction in inflammation. Age has little or nothing to do with that - only the dose level you need to achieve the required result.

3) A flare is a return of symptoms. It can happen with a reduction of pred dose to a level that is too low to manage the inflammation. Or it can happen at a steady dose but because the activty of the underlying autoimmune disorder has increased.

4) GCA symptoms are likely to be the same whether you are on pred for PMR or not. Either the dose of pred you are taking is enough to manage the inflammation or it is not. PMR is usually managed by doses below 15-20mg, GCA often requires a higher dose.

5) The main reason that people are diagnosed with cancer in the first 6 months is because the pred probably doesn't change their symptoms and a closer look is taken at why they have the symptoms. I find the idea that 70% of patients told they have PMR actually have cancer is not credible - either she has not been clear or you may perhaps have misunderstood. Cancer is one of the differential diagnoses the doctors should have investigated. PMR is just the name given to a set of symptoms which are due to an underlying cause. In the case of the PMR we discuss here it is an autoimmune disorder but there are several other possible causes including a couple of cancers, and they should have been screened for.

[RNRN in reply to PMRpro]

Sorry not clear enough on item 2: I am an active person. Not one to go to the beach on vacation and lay on the beach. You might call it hyper :). I like to hike, woodwork, garden, raise orchids and glass blow. That requires physical exertion. So what you might tell me is age related. Although not entirely true some people always stay active others not by choice or because of health. But since PMR has caused inflammation are there risks to staying active?

Flares: I am not sure I would recognize a flare. Some mornings my hands and wrists ache and by butt muscles are sore. Different from any overexertion affects I have ever felt. But these come and go. The wrist pain is larger than I ever felt but goes away after an hour of taking Pred. The muscle pain is also trivial compared to having no Pred. (which is a reason I am asking what constitute control). I can be fine for most of the week. I am on 12.5 for 6 weeks at the moment and should reduce to 11.25 next week.

Comment about cancer is on page 195 of the 2nd edition. Yes I hope I am reading it wrong. The statistic is including folks who pred may not of helped. So would be clear of a misdiagnosis. But I am under the impression that some cancers may seem to respond to Pred.

[PMRpro Ambassador in reply to RNRN]

The pred should reduce the inflammation entirely if you are on the right dose. However, the actual disease is not the PMR, it is an underlying autoimmune disorder that causes your immune system to attack the body tissues as "foreign" and that is what causes the inflammation (similar to RA but without any damage to joints occurring). That leaves your muscles intolerant of acute exercise - they won't recover as quickly as usual after you overdo things. You can build up the amount you do as a form of training - but if you just go out and do too much your muscles won't tell you by being tired until it is too late and then they will take much longer to recover, much as if you had done the 10km run without having prepared.

You can continue to exercise perfectly happily as long as you know your limits and stick to them. I built up slowly - I started the ski season in early Dec with 3 short runs with rests on the lift and a day between ski-days. I added another run at intervals as I built up strength. But it took me until well after Christmas to get to skiing most of the morning - still on the short runs. It wasn't until February I even considered trying a long run in one - if I tried earlier my leg muscles hurt as if I had skied all day just after one long run. The short runs were ideal - and that applies to much exercise, you can do more if you break it up into smaller bursts and rest in between. Doing exercise does actually help as long as you moderate it.

At a guess - your bad days follow a good day where you did a bit more than you should have. The Leeds group is looking at the effects of encouraging exercise - just in the form of giving patients a pedometer and getting them to increase their step count. Lots of people day they feel better after some exercise and on another forum there is a group of patients who have been at semi-competitive standards. They seem able to do almost the same sort of level - although some have had to cut back some or avoid certain activities. Basically, it is a case of what can YOU do. There are some people who can barely walk - and it isn't kind of someone to tell these people that if they ride a bike up a hill they will feel better just because they do! On the other hand - getting out and doing the amount you are able to without pay-back next day is beneficial. If you start small and build up slowly you won't end up really overdoing it - as someone has done this last week by helping their neighbour lay a carpet because the PMR didn't seem to be a problem! The resulting muscle pain has kept them on the sofa and they can barely walk! But you have to be consistent.

I only have a Kindle first edition (no pages) so I really can't comment on Kate's book. But I refuse to believe that 70% of people told they have PMR have that revised to cancer in the first 6 months. The usual figure quoted is that about 1 in 6 have their dx revised - more often to late onset RA. If pred doesn't help the symptoms then really the chances are that whatever you have is not PMR as we discuss it here.

[RNRN in reply to PMRpro]

THANK YOU. Yes I have been making sure work no longer interferes with being consistent. And I have been trying to correlate feelings with the prior days exercise so I don't confuse what is self induced with a flare. The Pred is so amazing and so quick to take effect that the engineer in me has a hard time: If you can't fully explain it you probably have not solved your problem.

[PMRpro Ambassador in reply to RNRN]

That is the difference between engineering and medicine - it isn't called the art of medicine for nothing!

Mostly though it is a dark art ...

[patsy699 in reply to PMRpro]

Just want to say how helpful I have found the exchange between yourself and RNRN. It is the sort of practical information that doctors don't give mainly because of time constraints ? also I remember when at RNRN s stage how well I thought I was doing but since have learnt the hard way but with help from this site. I am just down to 5 prednisolone and am anxious to reduce because I have raised intraocular pressure as a side effect of prednisolone. Eye doctor has started me on drops. I try to keep moving slow but steady during day and I also notice that overdoing it one day has a price. I discovered that I have a cousin who has had PMR twice, at 61 and 68 , also other people are making me suspect that this is more intermittent and / or chronic and that it is often missed diagnostically initially patsy 69

[PMRpro Ambassador in reply to patsy699]

I don't think it is just time constraints - very few doctors really have any concept what PMR is about. They also believe that once you are on pred everything is back to normal and all you have to do is reduce the dose to zero in 2 years. If only!

An Italian group published papers some years ago where they first looked at the use of methotrexate as a steroid sparer - which it apparently did - and then followed up 5 years later. They found that the methotrexate may have reduced the AMOUNT of pred the patients took overall but it had made no difference to the side effects. They also established that 30% of patients still required pred 6 years after diagnosis - that PMR is not the benign short-lived problem many doctors think it is - it is a chronic illness that may last far longer than they had thought.

[Doralouise77]

I was started on Pred for PMR and a year later, when I thought I was doing so well, tapering ever so slowly, I got hit with GCA....the symptoms were completely different than those of PMR... headache and jaw tiredness after chewing a while....I knew it was GCA immediately as my rheumy asked about these symptoms at every visit....

Cheers

[RNRN in reply to Doralouise77]

Yes I have been asked. But it is not clear if the symptoms are different if you experience it after you are Pred. Literature says that if you don't do a biopsy within 2 days of taking pred the giant cells are already hard to detect. Maybe it takes the 60mg dose to do this and not the PMR dose?

I have been having issues with night vision, but allergies come into play this time of year with the molds high as the temperature cycles between freezing and thawing.