Pred increase not helping

[Abbey17]

It’s now just over 2 weeks since I was bumped up to 15mg after major flare and I still feel as bad. Only thing that has improved is my mood. But struggling to get through the day.

Chronic fatigue and dead arms in the morning. Yesterday the first day in weeks and weeks I felt good then woke up this morning as bad as ever. I’m speaking to the GP tomorrow, is there anything specific I should be asking? I thought going from 5 - 15mg would have me buzzing about. Many thanks

[123mossie]

Sorry to hear you’re suffering, when you say it’s been bad reducing, when were you last pain free & on what dose? It could be that you’ve built up a lot of inflammation that 15mgm isn’t shifting. The other thing to consider is your activity levels- doing too much? Your gp should be repeating your bloods, crp & esr & you may need a short time at a higher dose to get on top of the inflammation. Hope you feel better soon, let us know how you get on.

[Abbey17 in reply to 123mossie]

Could be right, I was on 5 mg for quite a while but I felt good, no pain then a big flare, maybe it was too low and I was building up because it seemed to hit me like a bus. I have reduced my activity a lot as I’m not able to do much so a short day working then at least one day often two when I can’t. I expected to be buzzing on 15 my bloods have never shown high inflammatory even from the beginning and GP says that’s the case with some people but they check them every couple of months anyway. It’s the chronic exhaustion and brain fog that is most debilitating. I have some pain in both hips and shoulders that has improved slightly and I can manage that.

[Loyd in reply to Abbey17]

I had the same problem at the beginning of COVID. Tried to come off pred too fast and got rapidly down to 3mg then had a massive flair and put back up to 15mg - no better then 17mg - bit better but not much. Doctor put me up then to 30mg for 5 days - worked perfectly and then been back to tapering slowly again. Hope you get sorted. 🤞🤞

[Abbey17 in reply to Loyd]

Thank you glad you’re feeling better. It’s frustrating to get so low then back up again. But hey ho.

[PMRpro Ambassador]

Unfortunately, it is often harder to get flares under control than the original effect - I got to 4mg about 4+ years ago and then started a real relapse of disease activity and haven't got under 10mg since. My husband has been ill for a couple of years - and since Covid I can't get under 15mg for more than a few days. I then had a major increase in fatigue after the second Covid jab which is only now starting to lift after about 3 months. I'm OK on 15mg - nothing spectacular though.

[Abbey17 in reply to PMRpro]

Oh I’m sorry to hear that, and thanks for your reply, it’s a learning curve isn’t it. I will be more aware of it next time. When you google anything it’s always minimised to muscle stiffness but it’s so much more. X

[PMRpro Ambassador in reply to Abbey17]

Yeah, right! Whoever wrote that obviously had never had it!!!!!