Stopped taking two meds, now just prednisone.

[Trevgrrl]

Hi all, I've been through the mill. I started taking an infusion of Actemera, and came down with a very bad cellulitis infection in my legs. (Stopped Act.) Stayed in hosp. and rehab a couple months. Came home better, but the rheum saw a little problem with liver labs so she had me stop the hydocloraquine and another hydrosteroid (I can't find the name). These seems to me to have been helping the prednisone somewhat because I am so flared up with the PMR type pain and can hardly walk without crying aloud. I am taking 22.5 mg pred., high, I know for someone who has had this pain for years and years it seems. Also have fibromyalgia, arthritis, etc, but I know this PMR pain. It is in my shoulders, hips, legs, etc. What do you all think?

[SheffieldJane]

I think that you have had such bad luck you poor soul. My daughter in Australia got cellulitis from an infected mosquito bite - so painful and frightening!

I am so glad that they have streamlined your prescription. I can’t think what the additional drugs were actually doing to benefit you. I know the gamble of Tocilizumab ( Actemra) because I have been prescribed it for PMR/GCA.

I imagine that you are now having the mother of all flares, following all the trauma. You must be experiencing so much pain. You really deserve a proper conversation during which your doctor explains exactly what he/she thinks has happened. Also just how the medics are going to deliver you from this pain and disability!,?

I wonder if 25 mgs Pred would ease things somewhat? I would be tempted to try. I would also be inclined to seek another medical opinion - someone who really understands what you’ve got. Sending you ( a very gentle) hug. X

[Trevgrrl in reply to SheffieldJane]

Sheffield Jane, your message brought tears to my eyes, thanks for the sympathy.

[DorsetLady PMRGCAuk volunteer]

Agree with SJ, maybe a little more Pred initially to help you through, and longer term a second opinion.,

[PMRpro Ambassador]

At 22.5mg pred I would be doubtful that much of that pain is due directly to PMR - and the other things you mention can be almost indistinguishable from it even if it is a bit different. Plus pred works for lots of things, not just PMR.

Do you mean hydrocortisone? How much were you on? That could contribute to management of any inflammation-related pain.

Hydroxychloroquine isn't usually blamed for liver damage - except worsening of a particular condition in persons who have it. But hydroxychloroquine isn't usually used in PMR - there must be something else going on and, like the others, I think a second opinion is called for in such a complex situation.