Flare at 3 mg

[Katrinaroper]

Had a flare a while ago

.increased fron 4mg to 6mg...and esr came back down ...to19...

Back down to 3mg and ear gone up again. To 26..but felt ok for 3 weeks.

Woke this morning stiff and sore... for last 3 weeks been having hot sweaty episodes. Is this sweating a flare coming back!??

Anyhow.. decided this morning to take a double dose (6 instead if 3)

Was this wise? and is it ok to do it for one day and will it work? Or do i need to stay on it a few days...

Is it safe to pulse like this?

I am so fed up of this disease..my go wants me to see a rhumy as she thinks something else is going on

[SheffieldJane]

Hi Katrinaroper, If these were my symptoms I would assume that 3 mgs was simply a step down to far at this stage and go back up to 5 mg and if that worked, stay there for a few weeks. The side effects have been proven to be negligible at these low levels.

Obviously the Rheumatologist will want to do some investigations if she suspects something else is going on. Has she said what?

[Katrinaroper in reply to SheffieldJane]

No...never seen a rhumy before...gp just seems to be out of her depth...her only focus is getting me off preds

[DorsetLady PMRGCAuk volunteer in reply to Katrinaroper]

In that case, seeing one would be a good idea. GP is obviously out of her depth as you say, and that’s not doing you any good.

If it were me I’d stick at 6mg until things really settle back down. You are in “adrenal glands kicking back in” territory which usually makes things more difficult. Plus you’ve gone below the level of Pred you need on a daily basis.

As Jane says very little in side effect line of Pred so no rush! When you feel alright, then try reducing by 0.5mg and try my slow taper

healthunlocked.com/pmrgcauk...

Good luck, and hope you see a Rheumy soon.

[SheffieldJane in reply to Katrinaroper]

How long have you had the condition?

Your GP doesn’t seem very knowledgeable or confident about PMR. Bloods do not always give an accurate indication of the progression of the disease. Especially when we are taking Pred. It wouldn’t do any harm to see a Rheumatologist at this stage. You might not feel much further forward, but I’d try it.

[PMRpro Ambassador]

Your body is shouting at you that you have arrived at your destination - for now at least! You aren't reducing relentlessly to zero, you are looking for the lowest dose that manages the inflammation and gives you the same result as the starting dose did. It sounds as if you are there - probably 5mg. This is such a low dose it is doing no harm. PMR lasts an average of some 5.9 years, you aren't there yet!

practicalpainmanagement.com...

Your GP is out of her depth - offer her this link and let her find the original paper if she likes. But PMR doses are safe at this level. Then, either interview other GPs in the practice and see if they have more idea what they are doing or insist you are referred to a rheumatologist if she is insistent on getting you off pred (not that all rheumies are much better). All she will do with that is get the inflammation rising again. At present she needs to leave you at 5mg for a few months and then try again - not more than 1/2mg at a time and allowing at least a month between drops. Otherwise you will have the same result - again and again. It is a definition of insanity: doing the same thing and expecting a different result.

[Katrinaroper in reply to PMRpro]

Thank you