At a standstill

[gtate1914]

I was at 45mg when I started to flare, went up to 65mg w/o consulting rheumy who was unavailable. She insisted on going back to 45, 65-60-55-50-45 over the course of 5 days. I did. But instead of staying at 45 I felt 47.5 better for me. Been at 47.5 for 7 days. I have slight achiness in head, slightly tender scalp, sometimes a tender spot, mostly in afternoon and evenings. I am considering going up a little maybe to 55mg to see if any improvement from symptoms. Could not get in touch in rheumy this weekend. Will see her this week. Today I have blood labs to do which are always very low and show no inflammation. I point out they are not always 100% accurate but since they have been consistent for months, the docs feel they are accurate..... so I don't know...... The rheumy and my gp think much of it is due to anxiety which I try to control and which I know can be an issue. I also have some arthritis in my jaw and tmj disorder on the other side, my jaw even will click. So my jaw often feels sore. Tylenol does not seem to help at all.

I think the problem has been too quick reduction from unknowledgeable doctors. Or is the problem more with me?? Or a combination. So hard to know.

[gtate1914]

I also might add that I'm requesting second opinion. I have also requested another rheumy but was denied.

[DorsetLady PMRGCAuk volunteer]

Oh dear gtate1914,

What a mess! Like you, I’m not sure what is causing your constant return to pain, but I would hazard a guess - and you probably know what I would plump for!

You don’t want to stay on 65mg indefinitely, but obviously 45mg is not enough, so it’s not exactly rocket science to go for a dose inbetween!

The rapid taper has proved nothing - other than it hasn’t worked! So that what you need to impress upon Rheumy.

You have already gone back up to 47.5mg - after seven days that should have shown an improvement if it was enough. More proof for Rheumy!

It’s up to you what you do from here, but if you are seeing her this week maybe staying at that dose would show you are trying your best - but it’s not working. Probably not the answer you want - sorry!

[PMRpro Ambassador]

If you are one of the 20% or so who doesn't mount the acute phase response the blood markers won't rise - and so will apparently remain stable. Obviously your doctors don't do logical thought processes...

[gtate1914 in reply to PMRpro]

My first blood lab on 1/30/18 showed c-reactive protein 97.4 and sedimentation rate 42. On 3/13/18 crp was .4 and sedimentation 23. Thereafter its always been about .3 to 1.0 crp and 2 to 12 sedimentation rate. So my docs feel it is accurate because of first reading when I was first diagnosed. However..... I noticed on 3/13 when it was only .4 crp and sed rate 23 I was told to reduce from 60mg to 50 and I was having symptoms of scalp tenderness, sore jaw when chewing, temple and headaches, even in the days leading up to 3/13 on the day of the blood draw. Not know anything about reducing pred or the disease, I reduced to 50mg on rheumy's direction and ran into trouble soon thereafter.....

[PMRpro Ambassador in reply to gtate1914]

If you DID have raised values - the static bit now is almost certainly because you are on pred. It may not be quite enough but some people don't respond in the presence of pred. No-one knows why - it is just so... And for you - they need to be in low single figures or they don't really reflect what's going onl

[gtate1914 in reply to PMRpro]

I'm not sure I understood your post. Are you saying that the pred hides the real reading of the tests? And that the readings will always be in the single digits?

[PMRpro Ambassador in reply to gtate1914]

No - the result is the real reading - but just because they are "in the normal range" doesn't mean that the PMR has gone away, there is just no inflammation causing the liver to produce the proteins being measured or which cause the ESR to increase. And in some people the pred prevents that even if there is inflammation These tests are what are called surrogates - like you can see the effect of the wind but you can't see the wind itself. The thing that many doctors depend on to inform them is a mirage.

[gtate1914 in reply to PMRpro]

I guess I haven’t been understanding this. So the creative protein reactive reading of .4 is really the amount of inflammation in my body, but even so I am still having the GCA symptoms though just not as severe as before I got on Pred?

[PMRpro Ambassador in reply to gtate1914]

Sorry - I don't get what you mean?

[gtate1914 in reply to PMRpro]

Sorry. I meant to say even though my inflammation markers are very low I can still be experiencing some gca sysmptoms, i.e., scalp sensitivity, eye/temple/headaches (my symptoms are never severe, but hurtful).

[PMRpro Ambassador in reply to gtate1914]

Yes - that is possible.