Update on my tapering

[Hwle]

Hello again-it's been a little while. I have just been to see my rheumatologist (had to see a new one due to scheduling conflicts) - after filling her in from the beginning, she is now wondering if I have PMR. Apparently my westgren sed results have always been low but my crp (on initial testing) was through the roof at 201. (10 was the max). At most recent test both sed and crp were 2. I have been tapering every month down by 5mg and am now at 10mg. This am was my first morning after the taper. I would have to say I am feeling a bit achy but did have a pilates workout yesterday - so I am waiting to see if it's that or PMR. My dr is not certain that I have PMR due to these blood tests and may want to do some imaging to see how my joints look. She feels it could be RA as my father has it. None of my small joints have ever been affected and just have had severe aches and stiffness from neck down to calves prior to pred. I am aware that within the first 3-4 days of a taper, I can feel some pains, so I am keeping that in mind. Dr. did agree that after 4 days of still having pain to go back up to my dosage that I was on prior. I am just hoping that I don't need to do that. She also mentioned that needing to be on such a high dosage when first diagnosed was concerning but then looking at the crp being so high makes sense that I would need the higher dose to knock out the inflammation. She did agree also, that a slow reduction after 10mg is what we would do at 1mg per taper. I plan to follow the suggested taper Dorset Lady has posted if I get to that point. I am on 10mg for the next 4 weeks. My question is - is a little pain/stiffness expected even as I settle in to this new dose? Will I know for sure it's too low? And I am aware that around this time my adrenals will need to start kicking in or is that AFTER I go down below 10mg? Thanks everyone! I appreciate having this forum to help me!

[Hwle]

Btw I should say that my initial dosage of pred was 30mg in order to get the inflammation under control. Then went to 25, 20, 25, 10. Every 4 weeks I reduced with dr. apt. and bloodwork. My crp has been 2 each time I have had bloodwork after the first one....

[Hwle]

Sorry- 30, 25, 15, 10...

[Hwle in reply to Hwle]

Last thing- I have looked over all of the suggestions for tapering and I believe I understand that the slow taper DL suggested usually takes place once you go down below 10mg, am I right about this?

[sidra1968 in reply to Hwle]

Usually, I think. but since I have had so much trouble tapering compared to most, I have been doing the whole "no more than 10%", and just started 13 mg. I am going to start the DSNS method once I get to 11 mg..maybe sooner if I seem to have trouble at this 13 mg (it's only been like 5-6 days, so we'll see how it goes). My rheumy seems pretty clueless, but at least now leaves me to do whatever I feel necessary..and for that I am grateful.

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

Not necessarily- some start it on higher doses if they are struggling, some don’t need it until a bit lower. There are no hard and fast rules.. when you feel you need it.

Personally I started at 7mg, but that was when I thought it would be useful.

Your Rheumy obviously hasn’t taken into account your blood markers should be low, that’s why you take the Pred - just shows it doing what it should [clamping down the inflammation] - not that the underlying illness has gone.

International guidelines do state once below 10mg, then 1mg every 4-8 weeks depending on disease activity and patients wishes…

Just because your father has RA doesn’t mean you have it… you might, but sounds more like PMR . .and nothing to say you can’t have both. 😳

[PMRpro Ambassador]

I think this rheumy is jumping to conclusions without anu evidence unless there is a lot you haven't mentioned, 30mg is a bit high but given your CRP it was probably understandable. The international recommendations say the lowest effective dose in the range 12.5-25mg per day. 30 isn't so much higher.

PMR can be diagnosed even with normal range markers but when ESR/sed rate is normal it isn't unusual to find CRP to be raised. And once you are on pred, then you expect them to be normal so it beats me why we hear so often of rheumies saying it can't be PMR because the markers are low.

You can use the slowed tapers at any time if you find the need, even at over 15mg. Some people are very sensitive to a change in dose, using a slowed taper makes it more comfortable and makes it easier to identify the cause of a return of symptoms - was it the change or is it because it is now too low a dose. You have done very well to taper 5mg at a time this far - the general recommendation is for not more than 10% of the current dose and you have coped with far more than that from the start.

Adrenal function isn't usually a factor until you are down to 7mg and less though some people start to feel it sooner. Everyone is different.