More Prednisone or Less Activity🤔

[Klah]

I am taking Actemra injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good. I have been at this long enough to know that I could curtail a lot of my activity and continue the slow taper....but I would rather do all the activity and stay at 5m.....cannot force the PMR to burn out before it is ready, right?

[DorsetLady PMRGCAuk volunteer]

Hi Klah,

You’re right..you can’t force the PMR to burn out! It does that when it’s ready.

But you can make life a little easier for yourself by moderating your activity, doesn’t mean you have to stop altogether, but just be sensible about it!

[Klah in reply to DorsetLady]

Good advice...I know exactly when I am doing too much....but the pain comes later, so I push on....no discipline! Thank you!

[DorsetLady PMRGCAuk volunteer in reply to Klah]

I know it’s difficult, you want life to go on as normal, but unfortunately it can’t.

You will get back to normal one day, but in the meanwhile go easy on yourself, your body and your illness! You might you get there quicker if you do!

Take care.

[DorsetLady PMRGCAuk volunteer in reply to Klah]

Sorry should have read - you might find you get there quicker!

[Lyn_seaside]

I pushed myself to go on living the way I did before as much as possible. Very hectic job, walking the dog, pilates, cycling. I walked four miles rather than eight and cycled less, but I don't think it made any difference to the length of time my PMR took to burn out. I tapered right down to zero, resumed completely normal life but flared after six months. Went back to 5mg and tapered again and have now been at zero for a year, feeling exactly as I did pre-PMR. I'd say,if you want to, do it... you'll soon know if you've made a mistake, but if you're anything like me you'll feel much better for having tried!

[PMRpro Ambassador]

I thought the theory was that Actemra works on the pathway that produces the inflammatory substances so sent the autoimmune part into remission. Maybe not then.

[Klah in reply to PMRpro]

I thought the same thing...the Actemra attacks the iL6, cutting down on the inflammation. My doctor never said anything about the Actemra solving the PMR problem....in my case it is being used for me to taper the prednisone. Pick your poison so to speak!

[PMRpro Ambassador in reply to Klah]

PMR and GCA are the same thing in terms of mechanism, just at different points on a spectrum. Having to be on long term Actemra just to reduce pred dose in PMR strikes me as rather excessive. Not just in terms of cost, which would be monumental for fundholders to cover for all PMR patients, but also in terms of the potential adverse affects.

[Klah in reply to PMRpro]

Clearly brain fog has not been an issue for you! I have often wondered how you have managed the clear thinking all this time😊

[Klah in reply to PMRpro]

P.S. In any case, I do feel a lot better on the lower dose of pred. You have experienced the higher and the lower for extended periods and it is so much better to be down around 5, don’t you think?

[PMRpro Ambassador in reply to Klah]

I feel great at 15mg and always have done! Less so below 10mg.

[Klah in reply to PMRpro]

I was referring to how good it feels to take less pred in terms of brain fog, fatigue, etc. I can really tell the difference.

[PMRpro Ambassador in reply to Klah]

It does seem to affect some people badly - for me no brain fog, the fatigue is worse at lower doses. I was wading through treacle a few weeks ago at 7mg, feel a lot better at 9mg. I had brain fog with the unmanaged PMR, it has been much better the entire time on pred.

[Klah in reply to PMRpro]

I cannot even imagine not having the pred for so long, as you did! I was very incapacitated for the first few months until I got the

Pred. I have done really well on the pred except for fatigue....and as I have tapered the brain fog decreases. My rheumy has had patients with bad reactions to the prednisone, which I know is probable. We are lucky!