New to PMR, Is this the "normal" or is it a flare up

For a rare condition there seems to be so many sufferers.  Now that I have it I spread the word and I always here 'oh my mum had that...'.  Rare but widespread.

I was given 15 mg to start (here in the UK) but my sister in law (from CO in USA) said there they start you out at 20 mg. but of course it probably varies.  Of course I want to reduce but as i only started on 29 March and am currently waiting for a new rheumatologist (sacked the first one) should I wait to see the new rheumatologist before I start to slowly reduce?  Eileen and fellow expert advice please.

The American advice was to not use ibruprofen or paracetemol while using prednisone.  I can only use acetaminophen.  I don't think everyone knows this. 

Thanks everyone.  You all have helped me get through this.

 

It's only rare when you look at the general population - PMR is the most common cause of rheumatic problems in the over 60s and GCA is the most common form of vasculitis.

Acetimophen is paracetamol - and paracetamol is fine with pred. Ibuprofen and aspirin aren't (or any other NSAIDs).

Are all your symptoms reduced and stable? Was your ESR/CRP raised originally? Has it fallen to normal range and stable? The GP can check that. If so you could start to reduce - 1mg at a time is quite enough though!

How would I split my 5mg pills? (dumb question of the day)

EileenH are you a doctor?

Ask the GP for 1mg tablets - youll need them to reduce anyway, you can't manage 5mg at a time. You can halve pills using a pill cutter, available from the chemist, or by placing your tablet on a hard surface and putting your index finger on opposite sides of the tablet and pressing down. I think it was Flip told us that a few weeks ago - and providing the tablet isn't too thick it works, better if it is slightly rounded.

No, not a doctor (thank goodness!) though I did get my physiology degree from a medical school and could have gone on to do medicine. I and the rest of my family have all worked/work in the NHS, I was a medical technologist and later medical/science translator, my husband a clinical scientist, one daughter a nurse and the other is a paramedic. I had to know a lot of background stuff, have PMR myself and have done all the reading plus have collected the experiences of hundreds of patients over the last 6 years. And try to spread the word through the support groups and forums.

Well it is great to have an oracle around to give advice.  You say this is very common to 60 year olds but why don't some of these rheumys specialise in PMR?  It is like it is not a big enough disease.  As we all know it can feel really big and disabling. 

​Anyway I appreciate all your sage words of common sense and wisdom.  This forum has really made living with the condition bearable when it is at it's peak of hideousness.  I really thought when it hit me that if I had to live like this I was going to Dover and jump.  Feel better from the support of the forum and of course the drug (pred).

Anyway thanks again.

There are some who do - there is a rheumy in the southeast who is superb on PMR/GCA and I'd travel a long way to see him. I suspect he is just a good rheumy really but he does do research and international committee stuff for PMR. There is also a good group in Leeds. I know several people who have superb rheumies who care about PMR too.

Basically though, PMR doesn't kill or even really cripple us once it is managed properly. Unfortunately a lot of doctors think that once you are on pred everything is ticketyboo and that it then goes away in 2 years - and if it doesn't then it isn't PMR. So - there is the "leave me alone to look after people who are REALLY ill" mentality. 

I'm not dissing what anyone experiences with PMR but I can only suggest you go to a vasculitis or lupus forum (I find the ones on HealthUnlocked are particularly thought provoking) and read some of the posts there from people only in their 20s and 30s who already are as ill as many people only envisage cancer patients to be.

If you have to develop an autoimmune vasculitis that causes arthritic symptoms - believe me, PMR is the one to get. For 75% of patients it is done and dusted in 4 to 6 years without any lasting real damage. You may not be as fit, you may feel you lost out of a big chunk of your retirement - but you are still alive and, really, fairly well, not looking at joint replacements, ongoing chemotherapy and investigations to identify the long term consequences of either the disease or the treatment.

I agree. You get what you get and there are so many worse illnesses.  PMR goes away and like you say, once controlled I can do anything.  For me it is almost a blessing as I am desk bound at work but with PMR you have to move so I get out and walk everyday minimum 8000 steps (I know not much) but I went away and was happily walking 26,000 steps a day.  Hallelulah.  thanks again.

I remember now that my doctor who gave me the diagnose in 2004 told me that I was lucky to have a disease that goes away in two years (I had pmr and GCA). Well, maybe we should be grateful that for most of us we reach the end of the tunnel in a number of years. For me, it took 3 ½ years and I had an easy bout with almost no pain. I started the Club Zero in the Northeast forum and we have several members. I have been free from pred since December 2008! Having at least three forums is a great help. It was quite different when I was diagnosed and finally found the Northeast forum and Patient forum. There were also a Canadian and a US forum - both were very active and nice but it seems they have gone to sleep.