I am trying to get off prednisolone due to the side effects, but as I am now on 5mg (reducing by 1mg a month) & I am beginning to get some shoulder/upper arm pain, I wondered if I should up the dose, but by how much & for how long? I know it isn't a race, but I don't want to prolong the journey more than necessary.
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Potter100
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The pain is probably your body telling you that you have gone a bit too low. Did it start at 5mg after a week or two or did it really start at 6mg? You are probably better to switch to 1/2mg reductions now and use one of the slowed tapers to identify your optimal dose more accurately.
The flare protocol is to deal with an overshoot where simply going back to the previous dose isn't enough - if you identify you are too low quickly and react, not trying to tough it out, then that often works. When it doesn't and the inflammation has built up we say add 5mg to the dose at which you flared for up to 7-10 days and then drop back to the dose above where you flared. Don't go back to where you flared - that was obviously already too low and going there won't change the outcome just because of the flare protocol.
Strangely perhaps, you are more likely to prolong the journey by trying to force a taper, not by sticking at a dose just slightly higher than the optimum dose, the lowest effective dose.
What side effects are a problem for you? Most can be mitigated when you know how.
Thank you for that advice. I will discuss it with my doctor.
Side effects are moon face, thinning frizzy hair (both of which affect my overall mood & well being, (not just vanity), some unexplained itching, tiredness, higher cholesterol readings, night sweats.
Have you a problem with weight gain in general or just the moonface? It is due to fat deposits related to the pred - so cutting carbs drastically often helps it to some extent. My hair changed dramatically with PMR itself - I had it for 5 years before I was offered pred, Itching can also happen with PMR - same applies and it finally turned out to be an allergy to highly commercialised wheat starch! Fatigue is an intrinsic part of all autoimmune disease and must be managed by pacing and resting. And night sweats - also the PMR for many.
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