Can anyone say for themselves or know anyone where it has completely gone?

[Livingwithit]

I am 59 and first got pmr when I was 52. Was on steroids for 7 years (6 mthly injections for the last 2 years).

I remain very stiff and intermittently get those characteristic deepest gnawing aching pains in my legs and neck and get very tempted at times to have another injection. My inflammatory markers used to be sky high and have never gone back to normal but are just up somewhat.

My mother got pmr 20 years ago when she was 70 and remains on 5mg per day. My Dad got it 2 years ago.

I had flu injections and had the most terrible flu which went to pneumonia in the 3 years before I got pmr and suspect that as a cause but won't know until there is good research.

It has been utterly exhausting being in full time work (even an easy office job) and difficult to cope when you know that , tho' only in your 50s, you look like an ancient old person shuffling around and getting up and down from chairs and into cars like you are an old fashioned 90.

Swimming is the best thing for me as well as yoga (which I have kept doing once a week- - I grovel and crawl around to get up and down, but do my best, with the idea of use it or lose it and always fell better.

That's it, I know things could be worse with other illnesses.

Can anyone say for themselves or know anyone where it has completely gone? Best wishes Jane

[PMRpro Ambassador]

There is a thread on the patient.info PMRGCA forum where there are posts from people who have achieved zero pred. Most people who have got off pred tend to disappear into the sunset, getting on with living a normal life and forgetting about what may have been a very dark period of their lives.

patient.info/forums/discuss...

On the small NE charity forum (was much bigger until there were some serious server problems) we have several people who are totally off pred, both PMR and GCA, but who have remained as a social group. Some of them post here too.

[DorsetLady PMRGCAuk volunteer]

Hi Livingwithit,

See my post of about 8 months ago

healthunlocked.com/pmrgcauk...

And also this morning to another post on same subject

healthunlocked.com/pmrgcauk...

[Livingwithit in reply to DorsetLady]

Thank you Dorset Lady. Warmest wishes to you and thanks for your testament and courageous example. Kind regards,

Jane

[DorsetLady PMRGCAuk volunteer in reply to Livingwithit]

Hope it helps. You can get through it, although at times it never seems you will!

I can't imagine working full time when I had GCA, so I applaud you for continuing to do so.

Take care.

[BirmLiz]

Hi Livingwithit,

I was on pred for just over three years for PMR with one flare up which was so much more painful than the initial onslaught that I then took tapering into my own hands and followed the snails pace method. My last steroid was in the middle of December but I still have a stash in a cupboard 'just in case'. Every now and then as you mentioned on the low dose, I would get the deep, throbbing pains but in my shoulders. I held firm and didn't up the dose but if it had gotten worse or carried on for longer I would have.

Now it's nearing a year free of pred and the aches are appearing rarely and seemingly for shorter times. It's been an ordeal as anyone who is on this site knows. I used a stick to get about with when newly diagnosed and dosed and was annoyed at all the 80+ year olds who whizzed past me (I was 54)! I met some people who made me feel like dirt because I struggled with stairs and others who were angels and helped me without comment. In a weird way I am glad that I went through this. I know how it feels to be disabled and when I cried in frustration at my efforts to get dressed, would remind myself that there were people who had never been able to do it. It slowed my body down and I concentrated on internal development - I did meditation for the first time and I know that will help me for the rest of my life.

You're doing really well to work and exercise as you do - I was a stay at home mom and had the chance to do exercises when I could manage it but I don't think I could have held down a job. I agree with your use it or loose it attitude but even now there are times when I physically exert myself too much and need a bit of a rest and that applies to stress too but I can bounce back after a good nights sleep.

I wish you all the best with your battle; I think it's just a matter of time and the body strengthens and your energy levels rise. This condition would be bad enough if it only affected us physically but I felt emotionally and mentally battered too so we all deserve pats on the back for getting through this experience. We are a rare breed!

Take care

[Livingwithit in reply to BirmLiz]

Thank you very much for your response about your experience, Liz. Yes you raise two very important points -

1)internal development and compassion for people who have always had the experience of physical difficulties (and or worse) and being on the receiving end of kindness - people in the swimming pool changing room zipping up my dress, bending to pick things up when I couldn't and offering me a seat on the tube

2) gentle moderation in physical exercise and mitigating stress

Warmest best wishes Jane