Advice please - 1st post

[cribbager]

Diagnosed last July: CRP 65mg/normal range 0-5. Went private as no-one at surgery could speak to me for 10 days. 15mg Prednisolone - magic, immediately. GP returned, and cut to 10mg after 10 days, 'reduce by 1 mg per 2 weeks as tolerated'. I got down to 7mg but not effective from the 10mg onwards. I knew nothing but have learnt lots from this forum. I've had 2 phone conversations with him plus one text when I said I was going up to 9. Still achy painful thighs so 6 weeks ago I went up to 12mg which worked and I'm decreasing by .5mg each 2 weeks. It's working. My question is so many of you speak of regular consultations/blood tests/ contacts with rheumatologists /advice re vitamins etc- should I expect this or carry on (I've written to GP to set out my position and await his reply)?

[jinasc]

Starter for 10. DR Sarah Mackie is a Leading Researcher into PMR & GCA and is also a Trustee on PMR GCA UK>

healthunlocked.com/pmrgcauk...

Others will be along soon with advice.

Two things:

Write two copies down and give one to your GP.

TAKE SOMEONE WITH YOU FOR THE CONSULTATION.

[cribbager in reply to jinasc]

Thanks - such a quick response

[DorsetLady PMRGCAuk volunteer]

Have a browse through this for general info - healthunlocked.com/pmrgcauk...

And this for treatment of PMR from charity website -

pmrgca.org.uk/wp-content/up...

[cribbager in reply to DorsetLady]

Many thanks - I've previously browsed the 1st, and on your previous advice 'bought the book' which I'm reading but not come across 2nd suggestion so will read it later - thanks, you're so often helpful

[DorsetLady PMRGCAuk volunteer in reply to cribbager]

You’re welcome - the more you know, the better you cope. It’s not easy early days, but the more experienced you become, the more you feel in control. Good luck.

[cribbager in reply to DorsetLady]

Thanks again

[piglette]

Around 75% of people with PMR never see a rheumatologist. I had to get PMR diagnosed privately by a rheumatologist as my GP kept saying it was a virus. I was given steroids and vitamin D with calcium which are recommended and a Dexascan to check bone density. I had to fight for that. I think basically that is all you need. I had blood tests every three months and now only if I have problems. I think I would move to reducing every four weeks when you get to 10mg.

[cribbager in reply to piglette]

Many thanks - yes, think I'll slow down as 10mg didn't work too well initially. Thanks

[piglette in reply to cribbager]

If you have any problems STOP reducing, PMR always wins!

[cribbager in reply to piglette]

Thanks. I've gathered that from all the stories and advice I've read on here since finding this forum

[Zebedee44]

Welcome Cribbager, In five years of managing PMR I have learned more and had better advice from this forum than any doctors. I seldom have my bloods tested and I just soldier on in my own way with tapering the pred according to how much pain I am in. I saw Rod Hughes in Chertsey privately after three years but nothing changed other than better understanding of the complexity of PMR, then I saw a rheumatologist last year at my local hospital who prescribed leflunomide to help reduce the pred dose but didn’t advise me on side effects or adrenal insufficiency and didn’t do bloods.

Without this forum I would feel very lonely and unsupported as I journey through this experience. The folk here have personal experience of PMR and GCA and know far more about it than the medics, well that’s my experience.

[cribbager in reply to Zebedee44]

Thank you Zebedee - I fully agree re the folk on this fantastic forum. All the best in your journey

[Mazxstitch]

I was diagnosed with PMR April 2019, started on 15mg and after 15 months of "reduce 1mg every 2 weeks" and yo-yoing I was down to 10 mg. Found this forum and have used tapering plans ever since. I am presently on 5.5 mg. Only reducing .5mg every 5 weeks and feel much better.

[cribbager in reply to Mazxstitch]

Thank you - I think the main message I'm getting is to listen to my body and be very slow in reducing

[Sharitone]

Blood tests: yes, you would expect regularish blood tests while you are on steroids, particularly the early days. Vitamins: most of us get prescribed Vit D3 along with a calcium supplement, though some do not need it. Others get given Folic Acid (Vit B9), usually along with methotrexate. Otherwise, vitamins are not usually offered s far as I know; you have to do your own research and decide. Many people on calcium supplements take Vit K2.

[cribbager in reply to Sharitone]

Thank you for your advice and information. This is such a helpful forum!

[HeronNS]

Another experience: diagnosed by a new doctor in 2015 after over a year of increasing pain. 15 mg - miracle! After one month told to taper by 1 mg per week - BUT to stop reducing if there was any return of symptoms. This happened at 9 mg. On-line I found a forum where I learned I could increase my dose if pain came back. Went back to 10. Got slow taper plan, asked doctor what she thought, although I planned to use it anyway. She said I should give it a try. At that time, early days, I think I was seeing her once a month, then it was every three months. One day after a couple of years and me at a very low dose she said, see you in a year! She moved away, and I have had a major flare (now subsided) and my new doctor suggests every six months would be good for checking in. I am, of course, much older now, in my mid-70s rather than late 60s, and feeling it.

[cribbager in reply to HeronNS]

Thanks for your time and advice. This forum is so responsive, caring and helpful. I'm learning that I need to listen to my body and take time. Cheers