PMR & GCA Flare(s)

Hi all

I have a question I can't find an answer to using Dr Google. If, like me, both GCA and PMR are present and a drop in Pred. dose from 17.5mg to 15mg causes a (possible) flare, does that flare affect both conditions, or can there be a flare in one and not the other?

It's only eight days since that drop but I'm getting symptoms unlike previous withdrawal symptoms - increased shoulder and neck pain, increased pain in the shoulder joints and upper arms, and I've started having trouble raising my arms to 90 degrees (never had any such problems before). I also have a constant dull headache and throbbing scalp.

My bosses are nagging me to get a GP appointment. Any advice is welcome before I commit, though.

Thanks

Skibo

[SheffieldJane]

Hi Skibo, get yourself to the doctor, if not A&E. This sounds to me like a nasty and potentially dangerous flare building. You can't muck about with your eyesight when you have GCA, as you well know.

Your question made perfect sense to me though. I have not seen GCA flares separately dealt with from PMR flares on these pages.

I think PMRpro once said that there is a school of thought that says they are the same disease with different parts of the body being affected. Forgive me if that's wrong. Anyway whatever is happening to you needs to be checked as a matter of urgency. Have you tried increasing your dose yourself? Doctors don't have many other tricks up their sleeves. You may have left it too late to get away with 17.5 ( gutting I know).

Think of it like a forest fire, you need to deal with the flame before it spreads.

[Hidden in reply to SheffieldJane]

Hi SJ

I'll obviously have to take your advice as well as that from DL and PMRPro. It would be foolish not to listen to the three sages.

Gutted I am.

Many thanks

Skibo

[SheffieldJane in reply to Hidden]

I've learned everything I know from those two stars. Glad you're going to get it sorted and that you have decent bosses.

[DorsetLady PMRGCAuk volunteer]

Hi Skibo.

If you are having a flare, and that's what it sounds like, it means that the dose of Pred you are taking is not enough to control the inflammation in your blood vessels, so it's probably both illnesses. However, it doesn't really matter what it is, what's import is that you aren't taking enough Pred for YOU at this particular moment.

If you were okay at 17.5mg going back to that dose may be enough, however if the inflammation has got out of hand too much you may need to go higher. If I was you I'd try the 17.5 first, a few days should tell you if it's enough, if not then higher it must be.

However, if you are saying you never had these symptoms before, then maybe you have not been on enough Pred for some time. If things don't improve with you increasing yourself, then I agree with your bosses - see your GP.

I know the very often recommended drop is 17.5mg to 15mg, but many people find it too much. If you remember the 'not more than 10% of previous dose' message regarding tapering it will stand you in good stead. 17.5 to 15 is more than 10%.

Please keep us informed of your progress.

[Hidden in reply to DorsetLady]

Many thanks DL

I'll take your advice (and bow to your superior knowledge and wisdom) and see how it goes. I'll certainly keep you up to date.

Keep up the good work

Skibo

[PMRpro Ambassador]

They aren't really two separate conditions - I don't really know how to explain except to say that you can have inflammation in a medium or larger artery that will cause what we tend to think of as PMR symptoms.

The symptoms of the bit that is getting away will reappear. GCA-type symptoms will appear at a higher dose than most PMR symptoms but if the GCA is affecting the brachial artery for example you will get the shoulder symptoms.

However - your bosses are right and, like DL and SJ, I'm saying, get thee to the doctor! ASAP.

[Hidden in reply to PMRpro]

Hi PMRPro

I'm working from home so didn't see all of the replies coming through. Combining your advice with that from DL and SJ, though, I'd better do something about it (soon, honest).

On the subject of the relationship between PMR and GCA, the fact that they often occur together does seem to point to them being two facets of the same malady. I asked the question because I also know that the theory is 'contoversial'.

I attended a talk by Dr Sarah Mackie a few months ago (she used the term 'controversial') and she left PMR out of the list of vascular autoimmune problems for that reason. The talk was interesting for a couple of reasons - she explained what caused GCA, where the giant cells come from, and where the attack comes from (I'd assumed that it came from inside the arteries, not from outside). She also showed composite scans of PMR patients that showed inflammation in the shoulder and hip joints, and spine (top end of the back and bottom part of the neck) from one sort of scan, and inflammation in the muscles in the expected areas in a different scan. I don't recall what sorts of scans they were, though, and I may have misinterpreted some of what she said.

That said, I'd still go for the two illnesses being shades of the same problem...

Thanks again

Skibo

[PMRpro Ambassador in reply to Hidden]

I haven't seen the results but there was some research going on in Spain where they were looking at the temporal artery and the tiny arteries that supply the outside of the bigger arteries and suggesting that was where the problem was - which sounds the same as what Sarah was saying. I think that could be the link - that actually the problem (whatever it is) lies in the microcirculation - the very small arteries, and not in the large or medium arteries themselves.

[Hidden in reply to PMRpro]

That makes sense. Sarah did say that the micro-arteries in the outer layer of the larger arteries are where the attacks come from and, indeed, the body creates more micro-arteries to facilitate the attacks.

Fascinating.

[PMRpro Ambassador in reply to Hidden]

So it all comes down to angiogenesis ...

[Hidden in reply to PMRpro]

Had to look that one up - aye, seems so