update re post holiday symptoms.

[Sheeplegs]

further to my last post I increased to 17.5mg on Tuesday as I didn’t have any improvement in symptoms. I felt slightly better today and was able to do some food shopping without feeling ill afterwards. Had my GP telephone appointment tonight. She was not happy with my self medicating although I explained I’d been discussing it in this forum. I’m to reduce immediately to 15mg as that is the highest dose for PMR . I’m to book a blood test , reduce to 12.5 mg in a month then to 10mg in 5 weeks. I suggested a smaller drop than to 10mg as I’ve failed at this twice but this was not agreed to. If I struggle again I’ll be referred to rheumatologist. It’s a plan but I feel I’ve had my wrist slapped and don’t feel heard. To be fair the GP is concerned re side effects of steroids and quoted NICE guidelines.

[PMRpro Ambassador]

"I’m to reduce immediately to 15mg as that is the highest dose for PMR "

What rubbish. The 2015 EULAR Recommendations say the starting dose shouls be the lowest effective dose in the range 12.5-25mg/day

ard.bmj.com/content/74/10/1799

See Point 3 under Specific Recommendations for the management of PMR patients in Box 1.

If all doctors were familiar with this publication life could be rather less awful for PMR patients even if there are some flaws in it from the patient point of view.

Patients are individuals - something this publication emphasises repeatedly. Doctors should remember that and that in PMR there is no one size fits all management.

A second very important paper relating to PMR is a more recent one, a treat to target approach for PMR:

ard.bmj.com/content/83/1/48

"Recommendation 1

The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation.

This treatment target is similar to that of other T2T recommendations in rheumatology,13–15 and frequently serves as an outcome in clinical trials and observational studies of GCA and PMR."

Your GP can have a bit of bedtime reading ...

[Sheeplegs in reply to PMRpro]

Thanks . It feels like I’m in an awkward place with the GP. Hopefully the few days on 17.5 have mopped up some of the inflammation. Here goes

[PMRpro Ambassador in reply to Sheeplegs]

Can you see a different one in the practice who does know that 15mg is NOT fixed in stone?

[Sheeplegs in reply to PMRpro]

I’ll test out the initial one I saw. He seemed ok with me self managing but I don’t know his views re 15mg .

[PMRpro Ambassador in reply to Sheeplegs]

Well I have provided the documentation and you could offer it as "something you may not have seen", especially the T2T paper, that is quite new. Many like to be kept uptodate without having to keep an eye out. The lead author on both is probably top in the field in the world currently.

[Sheeplegs in reply to PMRpro]

Thanks. I’ll do that

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments -your GP needs to read up on PMR!

[Charlie1boy]

Hi,

Can’t believe I’ve read that! My goodness, you have my sympathy.

I was started on twenty mg, and upped to thirty mg by my GP to clear out the inflammation . It worked fine, and I’m currently in remission.

No chance of seeing a different GP?

Good luck.

[Sheeplegs in reply to Charlie1boy]

I’ll try and get the one I initially saw next time. It’s a bit of a lottery who you get to see and some are more reluctant to take a patients’ opinion on board.

[sidra1968]

What rubbish..again, I'd love to see how much she would be taking if she was in pain. Took 30 mg to clear me out, currently at 17.5, my lowest in just over a year. I would send those articles and say you are sticking with your own plan, because you have to function.