GCA And PMR

[Skrtjg]

Having GCA and PMR since July 2015 cannot get below 15 without a flare Doctor said must stay at 15. Has anyone else had this problem?

[30048]

I hate to be a broken record but have you ever considered that you ate not absorbing all of the medication. I could not convince my doctor that I was not . She finally apologized but way too late.

[SnazzyD]

Hello,

To help those who might have some ideas, can you say how the tapering was done, like what steps and for how long?

[Hindags]

What Symptoms do you have when you try to go below 15mg? What taper strategies have you tried.

Have you tried Actemra in addition to Pred? It is FDA approved for GCA in the US. I see you are from the US. Yours sounds like the kind of situation in which your insurance would/should cover it.

Recently someone on this forum found that she couldn’t metabolize prednisone but was fine on prednisolone, a formulation of Pred that is not metabolized in the liver and is the usual form prescribed in the UK.

[Polywotsit PMRGCAuk team member]

Your doctor should be trying you on alternative medications to help you reduce the steroids. These will depend on any other conditions you may have. Just telling you to stay on 15mg is not good enough. Get a second opinion.

[Soraya_PMR]

Are you clear in your mind about the difference between a flare and steroid withdrawal pains?

[Jackoh]

Being asked to just stay on 15mg is not right. Are you just under your GP or are you seeing a Consultant Rheumatologist as well. I also have GCA and PMR and have found it very hard to reduce below 16 mg. I am now also on a steroid sparer, Leflounomide and feel that this situation is being closely monitored by my Consultant. Let us know your details and how you get on.

[Mgt1234]

Hi, I have PMR and GCA and have had it for several years. Struggled to get steroids down, can’t take steroid sparing agents due to terrible side effects. The best way I have found that works for me is to split the dose. I take 6mg in the morning and 5mg at tea time. I have been on this dose for over 12 months. My consultant agrees to stay at this level as previously I would end up in A and E with a flare up. Hope this helps.

Best wishes

[Kaaswinkel72]

Mgt1234 you are a very creative person trying things out away from the square box many of our medical practitioners are in!! Admire you greatly.👍