Recent prescription for PMR following relapse

[Pesterfootbridge]

Had a PMR relapse at the end of December and went on 5mg preds a day. Tried a slow reduction after two weeks which I was coping with. Blood test in January showed inflammation levels ok. The doctor then sent this prescription and instruction through after we had a long negotiation over the phone. Comments please anyone?

[DorsetLady PMRGCAuk volunteer]

Not sure the prescriber is aware of how PMR works…..think you need more discussion.

You may be able to get down to say 2mg or even 1mg, and stick there a while….but if you just stop as suggested you are likely to end up in same boat as you were before.

[SnazzyD]

That rate would have been way too fast for my adrenal function to make up the difference, but that was me. How did you manage on doses lower than 5mg before?

[Pesterfootbridge in reply to SnazzyD]

Very slowly. I was on 4mg for a few months and then crept down to zero. Clear for 20 months and then the relapse

[PMRpro Ambassador]

I would chucked out if I said what I think! You know the concept that Rishi Sunak has that kids should do mathis until they are 18? Seems to confirm it!

28x1mg pred tablets will manage the first week - what about the rest? He doesn't seem to quite have grasped the concept of SLOW taper does he? Or realise this is a RELAPSE in the true sense of the word, it had gone away and has now come back ,,,

[Pesterfootbridge in reply to PMRpro]

He (or rather she) is ok on the maths as there were more packets. It's the actual PMR tapering that seems to be an issue. As I began the preds 2 months ago, before having a blood test, she wanted me to stop altogether and see what happened and if bad then apply for a blood test. I pointed out that the last test took two weeks to come through as did my phone appointment for her I did not fancy being in pain and immobile while I waited. When I get nearly through this batch of tabs I will suggest that they fix up a blood test then perhaps we could get the timing right. Better still would be to get the guy who looked after me last time out of retirement and we could then tackle this sensibly together. It now seems very difficult to get a face to face appointment and the practice relies heavily on the new Klinik self diagnosis system before they triage patients.

[Suffererc in reply to PMRpro]

think it just a matter of ‘get them off steriodscaap ‘. Are they trying to tell us something in a round about way or do they truly not understand 😉

[Suffererc in reply to Suffererc]

get them off steroids asap

[PMRpro Ambassador in reply to Suffererc]

They truly don't understand!!!!!

[piglette]

Lucky that your doctor did not recommend that ridiculous reduction to me. These people call themselves professionals.

[Mewy]

I had my relapse last fall and started on 15 mg / day. My NP left me on this amount for six weeks then one month on 12.5mg/day. Then 10mg/day for 2 weeks. Since then I am reducing by 1mg every two weeks. I am currently at 8 mg with no negative effects. So in effect I am reducing by 2mg per month. So far so good- no flares. Just thought I would chime in on this as I am on a two week reduction schedule.

[DorsetLady PMRGCAuk volunteer in reply to Mewy]

So far, so good...but just be aware that as you get lower, it may get more difficult... especially as your adrenal function will soon need to start working again.. But as you've been through it before, you know that.

[Pesterfootbridge in reply to DorsetLady]

I don't think that the GPs give out enough information about the effects of adrenal gland issues that the steroids cause.

[DorsetLady PMRGCAuk volunteer in reply to Pesterfootbridge]

I don’t think some of them know to be honest! At least not in enough depth …..

[PMRpro Ambassador in reply to Mewy]

Just be mindful that as you get lower, the percentage change gets bigger AND you get closer to the dose you are looking for and it might not be zero! The NP did well leaving you at the starting dose for a decent time - too many want to reduce with indecent haste!