Pred reduction to discover what?

[Jancorb]

I finally got to see a rheumatologist ( only taken 4 years!), But was very impressed. She asked me to reduce my preds, then at 7 mg, have been for over a year after numerous attempts at reduction.

What she wanted was for me to go down half mg until I hit a flare, get a blood test and then do whatever will make me comfortable again.

I've had 3 flares in 9 weeks, last one this week at 6 mg, not slept for days, hip and shoulder very clonky and painful , nowhere on my body not hurting. So another blood test yesterday, CRP at 3, previous ones 12 then 6.

I've taken 2 doses of 12 mg preds, all calm again and hip and shoulder much better.

What next? Put myself down to 5.5 and go through the whole painful episode again?

I see the rheumatologist on 2 nd October, what is she looking for?

Sorry it's a long tale.

[PMRpro Ambassador]

Not sure I'd have done it without knowing what she's looking for! Seems a rather unpleasant way to prove something - do I understand you to be saying that you use a couple of days of higher dose pred to get you OK after going down a step? Do you then stay OK for another period before a flare of symptoms?

[Jancorb in reply to PMRpro]

Hi , I've gone to 6.5 then 6 mg, straight after the high dose. It appears to get really bad again after 10/12 days. Obviously before that my joints not happy but then the all over body distress, I wake up at 2/4 am thinking I've been hit by a bus, that's where I was initially 4 years ago.

My CRP was 135 so my GP put me on 15 mg preds and 4 hours later i was cured!!

[PMRpro Ambassador in reply to Jancorb]

Shame you can't see her sooner - but on the other hand, you are getting to lower doses. Though with the couple of days at high doses you are catching up the total dose. I look forward to hearing her concept!

[Jancorb in reply to PMRpro]

Agreed, I'm thinking it takes 10 days to absorb the higher dose, that is I take 12 mgs extra over 2 days, therefore body doesn't see reduction for a couple of weeks.

But why is my CRP level so low? I could hardly make the stairs to get my blood test yesterday.

[PMRpro Ambassador in reply to Jancorb]

In some people the blood markers lag behind while they are still taking some pred. You have to have enough time with inflammation present to get the liver to produce the proteins - the CRP that also makes the ESR go up. Does she check the ESR at all? Sometimes it is a better monitor ...

[Jancorb in reply to PMRpro]

Yes it's on the form, I only ask for CRP result as I know that's inflammation. The rheumatologist will see all these, all the receptionist tells me , everything normal no action needed! Not really what we need to hear when in pain.

[PMRpro Ambassador in reply to Jancorb]

Were they normal before diagnosis too?

[Jancorb in reply to PMRpro]

Hi, I was ill with bad aches for 12 months, then very ill with high fever and couldn't get upstairs. My doctor suspected PMR and he rang me the day after with blood test results, my CRP result through roof at 135. But once on preds it's been normal. I now realise that taking so much preds to stop the pain, I'm just replacing all that I've given up, hence it takes 10/14 days for my body to recognise any reduction!

So tomorrow I'll be back to 6 mg, for 3 weeks then maybe 5.5 for the week before rheumatologist appointment. I'll just have to stock up on strong painkillers and good books.

[PMRpro Ambassador in reply to Jancorb]

It is VERY unusual for PMR alone to cause a high fever - that is a symptom more associated with GCA and, I imagine, LVV.

"I'll just have to stock up on strong painkillers" - do painkillers work? If so, that might suggest it isn't due to PMR.

[Jancorb in reply to PMRpro]

I think these are the questions the rheumatologist is looking to answer. Pity it's taken 4 years to get to see one! The painkillers merely make the pain tolerable.

[HeronNS]

It is strange. Sounds like you are now yo-yoing. Not a good plan. Did she actually say that once you'd done this once you should do it over again. And again? I'm sure I couldn't face it.

[PMRpro Ambassador in reply to HeronNS]

No, me neither - especially when you have to take the missed stuff to recover!

[Jancorb in reply to HeronNS]

I'm thinking she's looking for adrenal insufficiency?

[HeronNS in reply to Jancorb]

But .... isn't there a test for that once you're below 5 anyway? Curiouser and curiouser....

[Jancorb in reply to HeronNS]

Ah thank you, I knew a test was possible, the rheumatologist mentioned it. It makes sense though to get as low as possible before taking it. Many thanks

[SnazzyD]

Eek, sounds a bit barbaric. One thing that makes me worry is that reaction to any changes isn’t instant, so blood tests are not necessarily a quick window to now. I really don’t understand the rationale but would like to know!

[dancersize2]

When i was stuck at 6mg for 6 months my rheumy decided to add MTX. It did enable me to go down 1/2mg monthly(usng the DSNS method) so I got to 2mg after a year. Hope you get some useful info after all of the pain.

[Jura1959]

Sounds very similar to mine this time round got right of the pred was really good for around six weeks then had a flare and put on pred up to 5mg reducing down 1mg every 6weeks supposedly untill i get to a level that I'm comfortable on. Lol