Numbers going up on 25 mg of prednisone…🫤

[GivenUp24]

I started at 40 mg prednisone like 4 months ago… got down to 25 and started having symptoms, went back up to 30. Thought I was doing ok. Then started feeling exhausted and unwell. Got my markers done, went from minus 5 at 40, to 13 on 30 , now at 19 on 25…..I can’t take Actemra due to previous cancer. And methotrexate seems to be poor at helping most people. I’m going to try low dose naltrexone., and have an appointment at Johns Hopkins. I can’t keep going like this. My quality of life is pretty much nil.

Can’t sleep…..sweat all the time. And can barely make it up the steps. My mind feels like it is slowly shutting down… there’s nothing up there, where I used to be witty and happy. Now I’m dull..😫

[DorsetLady PMRGCAuk volunteer]

As we said in previous post, inflammation markers can rise for many reasons -not just GCA - but if they are rising then that needs addressing.

Sleep issues are a common side effect of Pred -especially at higher doses -but should improve as you lower.

Sweating and exhaustion could be GCA not being controlled properly - and at 4months in it’s still very much alive and kicking.

Perhaps a return to 40mg for a couple levels is in order but you do need medical input on this.

[PMRpro Ambassador]

"Got my markers done, went from minus 5 at 40 ..."

What marker came with a result of minus something? That doesn't make sense at all.

However, whatever it is you have, it is causing symptoms that need to be investigated thoroughly. Methotrexate may not help many with PMR - but it is a commonly used medication in rheumatology and it DOES work for many patients, even with PMR, but you have to try it to find out, not just say it doesn't work for some so I won't try it. LDN doesn't have a proven track record either so that is no different.

[GivenUp24 in reply to PMRpro]

I meant under 5…. Sleep deprived and needed to let it out

[Fatsiajaponica in reply to GivenUp24]

Feel better soon.💐

[LovesLouie]

I’m so sorry to hear this! My rheumatologist started me on the lowest dose of Prednisone possible - 10 mg. It took two week - but I started feeling some relief. Then another 2-3 months on 10mg and then did a dead taper that took a year and a half to get off of it.

Can you get a second opinion? My rheumatologist didn’t believe in starting at such a high dose. But if you are on one - try tapering more slowly. So decrease by 5 mg for 6 to 8 weeks, and then drop down another 5mg for another couple of months. And when you finally get down to 10mg - it could take another year to taper off them. Good luck! (PS Also check your diet and try to eat healthy to lessen inflammation in your body.)

[PMRpro Ambassador in reply to LovesLouie]

It depends on the diagnosis - and 10mg would be useless for GCA even if it eventually worked for you for PMR, it wouldn't achieve anything effective for many patients resulting in them taking pred with no benefit which is also not a good idea. It took you quite a bit of time at 10mg - whereas 15mg might have achieved a dramatic improvement in a few hours as it did for me. 10mg wouldn't have achieved as good as a result for me - it was 4 years before I could reliably manage on under 10mg. You actually had a very short duration of PMR - it is more usual to find it lasts well over 2 years.

The high doses are required in GCA to reduce the risk of total and irreversible loss of sight which can be the result of not reducing the inflammation very quickly.

[LovesLouie in reply to PMRpro]

Oh - I didn’t see the earlier post about GCA! Yes - all my advice is useless - hoping you find relief soon!