To taper or not...

[Portobello]

Help please? My PMR seems better. I am @ 1mg and was considering starting a slow taper to 0.5mg. BUT my Lichen Schlerosus is flaring and very uncomfortable (using Dermovate). Should I leave any further tapering until, hopefully, the LS calms down? I'm so disappointed as I was sure I was finally making progress! Thanks in advance for any advice/tips.

[DorsetLady PMRGCAuk volunteer]

It’s never a good idea to try tapering when you have other issues going on.

Your body is under stress from the LS, so don’t add to it by trying to reduce Pred.

Give the LS time to settle ….and hope you soon feel better.

[Portobello in reply to DorsetLady]

Thank you, as ever. That's what I'll do 🙄

[PMRpro Ambassador]

I'd wait a bit - it is a really low dose so nothing to hurry over - but why risk upsetting the applecart by changing the dose just now? After all - LS responds to steroids!

[Portobello in reply to PMRpro]

Oh I do hope you're right- about the LS I mean. It's taken a back seat for a while- if you get my meaning 😩. Thanks though I'll keep on keeping on @1mg

[123mossie]

Your twice daily application of dermovate should settle the LS in a week or two. To be honest I wouldn’t have thought 1mgm of pred would make any difference to LS, another disease that does it’s own thing!

[PMRpro Ambassador in reply to 123mossie]

Didn't mean that - but more that it isn't likely to be detrimental.

[Portobello in reply to 123mossie]

Thanks for your encouragement Mossie. LS worries me as much as PMR now due to damage it's already done & conflicting advice. Last gynae said " It'll probably get worse as you get older". Thanks- doesn't everything? At 74 there's always something else creeping towards the horizon 🙄

[spacevoyager]

I'm not sure LS has to do with age exactly. I am 68. I got LS exactly when my PMR symptoms started. So I believe they are both related to being Auto Immune. I am on a corticosteroid for it. The steroid helps keep it under control but I believe it will not go away until the PMR is in remission.

[Portobello in reply to spacevoyager]

Yes, they're both auto- immune although I developed LS long before PMR. I've been told it will never be cured and will simply flare every so often. Dermovate ointment is then the treatment but damage seems to be progressive. Good luck!

[spacevoyager in reply to Portobello]

Good to know, thanks. Good luck with your taper!

[Twopies]

I have a friend with LS and see what she goes through—so I wouldn’t recommend reducing now. At your dose, I’d just take it slow for a while, no sense is risking a flare up. Best wishes to you!

[Portobello in reply to Twopies]

Thanks- I agree. Guess I just needed a bit of reassuring 😊