Pride before a fall update

[Elaine-W]

I recently reduced to 22.5 whilst on holiday in sunny climes.

Nine days later upon my return I flared. I have felt really rough with a return to the temporal pain, fatigue and sore painful scalp. Also been feeling quite low. 25 didn't help and ended up going to 30. Blood test showed CRP 2.3 at this point. Pain continued and yesterday I took myself to 32.5. I woke this morning with the pain subsiding. A few questions. Was the CRP low because of the increases? Even though I have continued to have pain? I know I am not going mad. I am having a flare. At the beginning of this illness I had very high CRP and ESR. There's nothing like a return of symptoms to serve as a reminder that this is a really serious illness. I will never say I enjoy the well documented side effects. Who would. They aren't as bad as the scary return of symptoms. I will settle on the higher dose until I have heard from the rheumatologist and he has digested everything that has gone on. I will eventually get my life back as we all will. Take care xx

[DorsetLady PMRGCAuk volunteer]

Hi Elaine,,

Sorry to hear about your recent flare. Might have been wise not to reduce whilst you were on holiday - enjoyable as holidays are, they are still a bit stressful. But it's done, so maybe lesson learnt.

CRP levels may well have been affected by rise in Pred, but as we always say the symptoms are the key in everything. Hopefully things will settle for you at 32.5mg, and you may find you can get back down to lower levels quite quickly. Do hope so.

Take care, please keep us informed of your progress, and yes, you will get your life back.

[SheffieldJane]

I am sorry this happened to you and as ever I agree with every word DorsetLady says. I wish the inflammatory levels in our blood were a true indication of what is happening, it would make this disease so much easier to manage. Even doctors give blood test results a credence they do not warrant. Many sufferers have not shown abnormal bloods at all. They indicate something, but not everything. The symptoms you experience are a much more reliable indicator. You know for instance that you are in the midst of a flare. You can still have pride in the way you recognised it and are dealing with it. Like DL says you may get back on track more quickly than before.

It's odd that a holiday ( in sunny climes, always a plus for us except for the sweats) should precipitate a flare, but they do have stress in them, the travelling, the disrupted routines, the doing more prompted by enjoyment and our old holiday selves. You may even have picked up a virus in stale plane air or other mode of public transport.

Patience is the key here, don't feel down about it. As you say Elaine we'll get there. Keep us posted, we're rooting for you.

[PMRpro Ambassador]

In some people the blood markers lag behind the development of symptoms and in a few they don't rise at all while someone is taking pred even when they have symptoms.

And honestly - don't try to reduce, especially a significant step like 2.5mg, when on holiday!!!! DSNS is probably not too bad - it is only one day at a time of the new dose to start with.