Reducing the prednisone

[Celebrant]

I was pretty concerned about a big reduction from 10 to 7.5. It's been 4 days and while the aching is increasing it is not as bad as I thought it might be. Hope for me guys---I have a high pain tolerance so if it doesn't get worse I'd say I'm 60-70 percent better than when I started.

[HeronNS]

Hopefully you can stay at this new dose for at least a month to make sure it really is adequate. If it is, great!

[SheffieldJane]

Do be vigilant though, it’s not just the pain and stiffness, unchecked inflammation is harmful and can spread. GCA is the big concern as we PMR sufferers are especially vulnerable. There is no virtue in putting up with the pain. Best wishes. Jane

[Celebrant]

So, how do I fiqure out what is an acceptable amount. Even during the course of the day, I have become stiffer and am hurting more but it hasn't reached what I would class as a pain level. Also, am I correct in understanding that there is inflammation somewhere in the body and the doctors can't identify where this is?Do we all seem to have the same inflammatory markers?

[SnazzyD in reply to Celebrant]

Hello, it means there is inflammation in the blood vessels but to what extent is difficult to say. The muscles are stiff because the vessels supplying them are inflamed. The problem is if it goes to larger vessels and causes damage or goes for the head and cause GCA and until it is a problem you won’t necessarily know. Scans don’t always help either. Therefore, it’s not really a good idea to tough it out in my opinion. Not everyone has raised inflammatory markers, even when it’s in full flight. Mine were raised for me but still in normal range even when my sight was going with GCA which I had no idea about until about 24 hours before that happened. Hopefully your question on dosing will be answered soon.

[PMRpro Ambassador in reply to Celebrant]

That is almost certainly because you were well controlled before the drop - so had a bit of wriggle room. Every morning a new lot of inflammatory substances is shed in the body and the idea is to find the dose that is enough to do that without being excessive. If the dose you take is even a tiny bit too low, there is some inflammation left over each day, building on the baseline you were at. However little the bit left over - the dripping tap of inflammation will eventually fill up the bucket, it will overflow and you will flare. The fact you say you are experiencing INCREASING discomfort suggests to me you have overshot the dose you need at present and you are approaching the tipping point.

The aching shouldn't increase - if it is due to steroid withdrawal then it starts immediately you drop the dose and improves over the following 2 or 3 weeks for most people, sometimes quicker, sometimes slower. BUT the difference is that steroid withdrawal improves as your body gets used to the new dose. Being at too low a dose does not - as the inflammation builds up stiffness will increase a bit and eventually you will get back to where you were originally and being in a flare. When you reduce the dose you are looking to maintain exactly the same status you had with the old dose - there should be no change there.

The ESR and CRP are just general markers showing there is inflammation. Doctors can't say just looking at ESR/CRP where the source of the rise is, just that there is one somewhere. They rise with any inflammation - in joints, infections, injury but there can be values that are within the normal range for a large population but they are raised for you and a few of us never get out of "normal" rnge as Snazzy says. They are not gospel.

In the case of PMR it can be shown using PET-MRI in the synovium (joint linings) and tendons around joints and probably would be found in the capillaries (the tiniest blood vessels) if there were a way of imaging it. In GCA the inflammation is to be found in the walls of larger arteries (but that is relative). The temporal artery isn't particularly big as arteries go, the ciliary artery that supplies the optic nerve is even smaller - the aorta and pulmonary arteries are big. They can all be affected by GCA.

You may be satisfied with 60-70% better than at the outset - if you were 75-80% better on 10mg then I would be concerned. 70% overall is the minimum improvement good doctors will look for - that may be the stiffness is all gone but the bursitis remains for some time. But I'd say you are playing with fire and you have gone too low. I hope I', wrong.

[Mstiles in reply to PMRpro]

How I wish the rheumatologist I saw who put me on the initial dose of 40 mg had explained GCA do well! Or explained at all. Maybe I wouldn’t have stayed on 40 /35 mg of pred for so long, being so confused about what were withdrawals, what was a flare, etc..,

Thanks PMRpro!

[Celebrant]

This reduction does not seem to be working well, I have an appointment with the rheumy on April 6 and I don't know if I should just suffer the aches, pains and swelling or if I should go back to 10 mgs. I don't think I was on a high enough dosage at 10 as the pain did not leave but I was much better. This is such a confusing condition.

[PMRpro Ambassador in reply to Celebrant]

Did you start on 10mg? If so - not part of the recommendations, you need to start on enough to really clear things out, min 12.5mg say the guidelines. If you started at higher - what was the pain like then? That is your guideline: there should be no lasting increase in pain and other symptoms with each reduction. From 10mg no reduction should be more than 10%, i.e. 1mg at a time. Reducing more each time means you risk withdrawal symptoms - so similar to PMR you can't tell which it is.

You tried a 25% drop - it was never a good idea. If the pain returned immediately and then improved over the following few weeks then it would have been OK - apart from causing totally unnecessary discomfort. But if things are getting worse it means the dose is allowing inflammation to build up each day. Leave it and you will eventaully be back where you were at the outset. And needing a far higher dose to get things sorted. So you have negated the perceived advantage of a speedy reduction.

You are NEVER reducing relentlessly to zero: you are looking for the lowest dose that gives the same result as the original starting dose. Providing of course it was enough then.

[Celebrant in reply to PMRpro]

I hurt and I'm going to add a 5mg tab today and see what happens, Rhuemy is not available today to chat.