Is 30 mgs to 20 mgs too much taper?: I was... - PMRGCAuk

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Is 30 mgs to 20 mgs too much taper?

Vaggers profile image

I was diagnosed early August and have been extremely steroid resistant failing to respond 15, 25 pred then injections in arm and buttock,a few days apart, of 120 mgs. All this had no impact whatsoever on my symptoms. I finally responded to methotrexate and 40 mgs pred daily. I have now taken this for a month lowering to 30 mgs a week ago. My Rheumy has told me to taper to 20 mgs in two weeks time. Is this too big a drop? I read on here no more than 10% of your dose is best. I thought maybe i could make it 25, what do you think?

Another question too. I am due to see my dental hygienist in a couple of weeks who is very thorough and am a bit concerned as I am now immunosuppressed. Should i give it a miss? Feeling very vulnerable these days on all these steroids!

14 Replies

You may well feel it at that jump as just because your PMR might be Pred resistant, your body may well be used to it. Perhaps drop in smaller doses but end up at the same overall drop at the end if a slower reduction is non negotiable with your docs.

When I see my hygienist I have rescaling done by hand because o found the ultrasonic whatever it was gave me inflamed gums for a week or so. No problems since.

I would feel like you do, having had that kind of start. I might be inclined to use 2.5mg drops until I reached 20mgs with breathers in between of 2-3 weeks depending on symptoms. Use one of our recommended tapers.

I would carry on with the thorough dental clean. It is more likely to keep infection at bay than cause it. Mention your condition though and the drugs you are on. Of course you feel vulnerable and need to take great care of yourself.

Thankyou. I have almost decided to drop from 30 to 25 then 20. (Dont have any 2.5) its trial and error I suppose.

PMRpro profile image
PMRproAmbassador

If you have "only" PMR then 40mg is an exceedingly high starting dose and for most doctors would trigger a suspicion that this is NOT in fact PMR. How long did it take for the methotrexate to have an effect? When you haven't been on pred for long it is often possible to drop in relatively large steps and using methotrexate is supposed to make the reduction in larger steps more likely to succeed. The only way to find out is to try I'm afraid.

I can't comment on the hygienist - I refuse to go!

Vaggers profile image
Vaggers in reply to PMRpro

Thankyou for your prompt reply. Im not sure about how long it took the methotrexate to work. I know i was finally pain free the day after I swallowed 40 mgs of Pred. Both rheumatologists I have seen agree I am the most ‘steroid resistant’ patient they have encountered. I have been thoroughly tested, scanned, xrayed to rule out other causes for my symptoms. My crp went from 35, 59, 99 to 109 and is now down to one. I feel so much better and will now go down 20 mgs in two weeks after what you have said about the Metho making the bigger taper easier.

I am cancelling the hygienist! Thanks again

As PMRPro says is this really confirmed as PMR? There are other things it could be that will be helped by that sort of dose.

Ask your hygienist if she is happy to see you with the steroids. I am sure she will be.

Vaggers profile image
Vaggers in reply to piglette

My last hospital letter following Clinic attendance says PMR. I do feel I have been thoroughly screened for other possibilities. Neg for RA. Also had myeloma screen, and PET ct scan ? Vasculitis. I am going to speak to my Dentist. Thankyou

PMRpro profile image
PMRproAmbassador in reply to Vaggers

What did the PET scan show?

Vaggers profile image
Vaggers in reply to PMRpro

PET scan just showed ‘uptake due to inflammatory arthropathy at large joints’ and ‘long segment uptake involving bowel due to Metformin intake’ However, I have informed my rheumatologist that I DO NOT take Metformin so have been referred to Colorectal dept but, despite chasing this referral for a month now, I have not received an appointment. Another concern.

PMRpro profile image
PMRproAmbassador in reply to Vaggers

Yes - was it your result????? PMR should show up on a PET scan ... Unless you were already on a moderate dose of pred.

Vaggers profile image
Vaggers in reply to PMRpro

It was my result I have a copy of scan report. I was already on moderate dose of Pred. How does Pmr look on PET scan? Do u think its possible I dont have PMR? Maybe sero neg RA? Would the drug regime I am on at the moment be appropriate for RA (20 mgs Methotrexate and 30 mgs pred)

My GP felt ‘things werent adding up’ im not sure he feels I have PMR. I am a bit confused and not sure how I should proceed. I am grateful for your help

PMRpro profile image
PMRproAmbassador in reply to Vaggers

The inflamed tissues should "light up" - they should take up more of the tracer than the surrounding tissues.

Yes- that would be a fairly normal approach for an inflammatory arthritis - mtx is the first line approach, the pred gives symptom relief while the mtx starts to work which can take up to 6 months.

I saw the scan on screen there was certainly lots of ‘light up’ bits especially shoulders and hips.

PMRpro profile image
PMRproAmbassador in reply to Vaggers

That is pretty typical of PMR - wonder why they reported arthropathy...

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