3 months and counting...

[PRL1957]

Hi, everybody.

I've not been on here for a while (the emails stopped for some reason), but here is my update.

It has been 3 months since I tapered off prednisolone completely - and so far so good. I found taking my temperature gave a good indication of rising inflammation (for the initial PMR, a brief period with GCA and a single incidence of covid) and I seem to be back to my pre-PMR average now.

I don't know what my bloods will show. The last test was almost a year ago, but I will get in touch with the GP soon. Hopefully, that will confirm that my PMR has gone away.

Now, I just hope it doen't come back.

[DorsetLady PMRGCAuk volunteer]

Hope so too…and rather than bloods, it’s lack of symptoms that will prove PMR has gone into remission. Bloods can be elevated by any inflammation - not just PMR.

Mine went a bit bananas about 3 months after I had a couple of replacement surgeries within 6 months… but absolutely no return of GCA…and went down after 2-3 weeks of Pred - which GPs insisted I take -for obvious reasons if you know my story].

[PRL1957 in reply to DorsetLady]

Thanks, DorsetLady.

Yes, I take your point about bloods and other causes of inflammation. Actually, what I am more interested in/concerned about are my HbA1c levels, which have been between 45 and 49 mmols/mol during my PMR period. It seems these can be raised due to inflammation - and my results (only 4 data points) did appear to track my ESR and CRP values. But those HbA1c values could also point towards diabetes. I don't have other symptoms of diabetes, but it would be really nice to see that my HbA1c concentrations have dropped, along with my CRP and ESR.

[DorsetLady PMRGCAuk volunteer in reply to PRL1957]

Have a look at diabetes Uk site -if you haven’t already -for advice on how to lower levels -

diabetes.org.uk/guide-to-di...

[PRL1957 in reply to DorsetLady]

Thanks.

[PMRpro Ambassador]

If you aren't getting notifications - contact HU Support if DL's advice in the top Pinned Post doesn't sort it out. It is a common problem but can be sorted.

Three months is a good start - hope it continues.

[PRL1957 in reply to PMRpro]

Thanks.

[Sharitone in reply to PMRpro]

I have contacted them several times, and done as told, but still no notifications

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

Have you followed the suggestions in my post?

healthunlocked.com/pmrgcauk...

If you don’t get a reply from HU, I’m happy to have a nag on your behalf…

[Sharitone in reply to DorsetLady]

I've done all those things. If there's still nothing after my scary holiday, I'll take you up on that. Thanks. I have contacted HU a couple of times over it, and the emails usually come back for about 2 days.

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

😊