Flare-Pred increase- feeling worse

[Naim1]

After a flare up, GP increased my Pred from 9.5 to 12.5mg

My PV level was 1.81

I've been on the 12.5mg now for just over three weeks.

Had a blood test after two weeks & my PV levels had dropped to 1.52

In the last 4 or 5 days I feel even more fatigued, brain fog & puddled.

I've got niggling pains in my neck & shoulders again & in the small of my back.

GP has been on holiday for the last two weeks but hoping to get an appt this week.

For months 10mg was working.

Questions ....

Have I flared up again?

Have I gone too high at 12.5mg ?..( bit of a daft thing to say I know)

Is my body still getting used to 12.5mg?

Should I go higher, up to 15mg?

I'd like to throw some answers at the GP.

I know from reading that the disease can flare up regardless.

Feel like a piece of laundry in a tumble dryer since this all came on. Just can't get things settled. 😩

[PMRpro Ambassador]

You have flared before haven't you? Are you only under a GP? Have you been referred to a consultant rheumatologist?

Did you feel like this when you flared before?

Is it possible you have caught a bug of some sort?

Have you done anything unusual/extra in the last week or two?

Not only does PMR itself have a habit of flaring without warning but sometimes it can be the forerunner of LVV or GCA (large vessel vasculitis and giant cell arteritis). Judging by your profile, your doctors have messed you about rather and got you into a yoyo pattern of dosing which in itself can lead to all sorts or problems, making it increasingly difficult to control the inflammation and then taper the dose down.

[Naim1 in reply to PMRpro]

Thanks for the quick reply.

Activity wise, i've not done much, kept myself steady ( can't do a lot anyway as the fatigue & cognative issues come in waves & without notice. That has been the main problem through out).

After previous flare ups the increase in Pred has sorted the inflammation. The fatigue & cognative issues did not get any worse, but neither did they get any better.

I've never been referred to a

rheumatologist since being diagnosed by the GP a year ago.

I'm so frustrated. 10mg was working. The only reason we lowered was to try & make the extreme fatigue & cognitive issues better so I could try & get back to work. 😩

[PMRpro Ambassador in reply to Naim1]

Your GP is rather remiss - you should have been referred urgently to a specialist long ago, Simple, straightforward cases can be managed by a GP - providing the diagnosis is correct and that isn't a given by any means. His attempts at tapering your pred haven't been stellar.

You are relatively young and male which makes you atypical for a start. Although you apparently responded well to the starting dose you have had difficulty reducing the dose and I noticed that in a reply to one of your earlier posts DL commented your symptoms were potentially GCA-ish. Sweats do happen in PMR - but are far more typical of LVV or GCA, as are rashes. You are also putting yourself under pressure to get back to work - and you patently aren't fit to do so.

My concern is that you have something more than "just" PMR and the GP isn't acknowledging the fact. You need specialist management and sooner rather than later.

[Naim1 in reply to PMRpro]

Thanks.

Think it's time to have that conversation.

I've been going sideways & backwards for months.

Will see what comes of my next appt.

Thank you once again for your help. 🙏

[PMRpro Ambassador in reply to Naim1]

It is why we're here. Plain and simple ...

[DorsetLady PMRGCAuk volunteer]

I know you have been blood tested for other health issues and nothing found, but would say with the problems you have had since diagnosis, you possibly have something else going on besides PMR.

As PMRpro asked have you been referred to a Rheumy? I think you need somebody other than GP looking at your issues with new eyes.

[Grammy80]

Hopefully, you can get an appointment this week. The Ambassadors on the site have given you some solid advice and hopefully you can utilize that info to insisit on seeing a rheumatologist. Sending my support...💞

[Naim1 in reply to Grammy80]

Thank you 🙏

[sidra1968]

Not much to add, but this disease definitely can be 2 steps forward, and then sometimes 3 steps back..very frustrating.

[Naim1 in reply to sidra1968]

For sure. I'm learning...quickly! 😩