What is the best way to cope with PMR and GC A

[Vickie50]

Just been told that I have PMR and GCA, I am just 51 last week and feel that this is the begging of end. Most people seem to be a lot older than me and I can go back to 1998 when I first suffered pains in my shoulders and trunk.

I would really like to know if there is any other people that started suffering before they were 50 and what is the prognosis, is it really as depressing as it appears?

[Hidden]

Hello Vickie,

I was only just 50 in January, and have had PMR since November.

I have good days and not so good days - just going through a bad patch at the moment, but you need to be kind to yourself, life can still be good!

[Hidden]

Hi Vickie50

The answer to the last part of your question is NO! I was older than you when I got PMR, but I was very fit for my age. I was a nurse/ carer for very disabled people with both mental and physical disabilities. I had a body mass index of 22 and was very fit. After a series of traumas in my life I came down with P.M.R. which I believe I inherited from my Dad.

Enough of me. I see you have GCA. The big one. Because it is so potentially damaging, doctors take it very seriously and hit it hard with much larger doses of pred than they do for PMR. I do hope your rheumy has you on a suitable dose for your illness. If the dose can cope with GCA. it follows that it will also cope well with the PMR.

Going back in your history, the pain you had in the past may or may not have been due to PMR. Who knows. I also had pain , off and on, due to strained muscles before I developed full grown PMR. I do not have GCA.

When I was first diagnosed with PMR, I was given 30mgs of pred. It knocked the pain out in 3 hours. Before I was on steroids I could hardly move and my stamina was almost nil.

You have probabley read about all the aweful side effects caused by pred. All I can say on the subject is this. Most, if not all of them will go once you are on the low doses - below 10mgs. Stop worrying about them, if you can. Remember, pred has drawbacks but it's power to knock back inflamation is massive. There is nothing that compares.

I started on 30mgs and, although I have had one relapse when I had to go back to that dose, I am now on 7.5mgs and beginning to feel more like my old self.

You say you are too young for these illnesses. Believe me, you are not on your own. Remember those aches and pains. It is now thought that PMR. could have been greatly undiagnosed in the past because it was "a disease of elderly ladies"- just part of the ageing process. WRONG!

If you need to talk more, keep in touch.

Best wishes, Pats.

[Hidden]

Hi Vickie50

I was 52 when PMR & GCA was diagnosed. I had been visiting Osteopath for shoulder / problems for approx 1 yr before diagnosis so its hard for me to define when PMR / GCA kicked in.

The diagnosist took me by surprise especially eye loss assoc with GCA and this has been my main concern.

Steroids do have some pretty horrible side effects but I dread to think where I would be without them!

It is a frustrating illness because it is different for eveybody and no-one can give you a definitive answer. I have had to adapt to accepting some days I can do more than others but I wasn't expecting to do this in my 50's!!

I find it is really important to plan enjoyable activities / outings etc otherwise this condition ( and its treatment ) can really get you down.

I hope you start to feel better soon

Best wishes

Maryjayne

[Vickie50]

Thanks

Thanks for all your support several months on my life has changed for th better. Having been in pain for so long I now have days when I have no pain at all. Most days I can get out of bed and look forward to the day ahead which is a real change.

There is life a life after been diagnosed with PMR & GCA, yes I do have bad days but they are nothing compared to the constant pain I was in just a few months ago.

Thanks for the support when I really needed it

[Hidden]

Hi Vickie,

So very glad for you. I must say I feel the same as you. On most days I can lead a pretty normal life. There is life after pred after all.

Pats.