Should I decrease my dose ?

[Rubha]

I was diagnosed on Jan 6th this year with PMR. Started on 20mg and immediate relief. After 2 wks GP reduced to 15mg. Since mid Jan I have gone from 15 to 14 then 3 weeks ago I reduced to 13. My GP is good and not pushing any reductions. I have had no return of symptoms and know I will be on steroids for a some years (GP has been very firm on that) . My query is .....is it too early to go to 12 mg ? I'm just wary of a return to symptoms. Thanks for all advice on this site.

[DorsetLady PMRGCAuk volunteer]

My query is .....is it too early to go to 12 mg ?

The only way you’ll know is to try…but if you stay at each dose for 3-4 weeks and feel okay with no return of symptoms then yes try next step down.

It’s very much you learning to know your illness and reducing slowly-and nice to hear GP is sensible…

Maybe have a read through this, including the various links… so you feel able to mange your own PMR…

healthunlocked.com/pmrgcauk...

[Rubha in reply to DorsetLady]

Many thanks Dorset Lady. I was thinking along those lines but wanted to sound it out. My GP is good and very aware of PMR. I am so lucky.

[PMRpro Ambassador]

As DL says, only you can tell and 1mg every 3 to 4 weeks is a fairly reasonable rate of tapering. long enough to see if it is still enough. You should feel as good at the end of a taper step as you did at the start of it and if you don't - wait a bit before trying the next step down.

Glad to hear you have a sensible GP!!

[Rubha in reply to PMRpro]

Thanks PMR pro. My GP feels if I get to about 10mg without a return of symptoms I then begin to go much much slower. She says ....as long as it takes.

[PMRpro Ambassador in reply to Rubha]

Excellent - she has it in one!

[Rubha in reply to PMRpro]

👍👍👍

[NCStateLine]

Hi Rubha -

I seem to be on a very similar schedule to you. I was diagnosed mid January 2024 and had all the classic symptoms. I was totally miserable and had been for a couple of months. The one item that gave my rheumatologist pause was all the blood markers were normal. They started me at 20 and in 2 days I felt amazing. After 30 days I went to 15 and no issues. After 30 more to 10 and no issues. This past month I went to 7.5 and after a couple of days I had sore biceps, triceps - the pain I remembered. After a day or two that has subsided and I plan on staying at this level for 30 and maybe go to 6. Seems like I am getting close and need to slow down -as to not aggressively overshoot. My rheumatologist felt we could be a bit more aggressive early because of the normal blood markers and that I am male and his experience was he thought this was reasonable. Hope all goes well with you.

[PMRpro Ambassador in reply to NCStateLine]

I'd really advise slowing down to not more than 1mg at a time and 1/2mg would be better since the response to that big drop suggests you are getting close. I know quite a few men who would disagree with your rheumy - sometimes they really struggle too.

[DorsetLady PMRGCAuk volunteer in reply to NCStateLine]

Ditto to PMRpro comments re slowing down… and your Rheumy might think it’s reasonable, but your body may not!

[NCStateLine in reply to DorsetLady]

Agree and appreciate your council. He suggested 2 weeks at 7.5 and then down to 5 and I told him let’s do a month of 7.5 and see how that goes. No way to 5 after 2 weeks and he was good with that. I see him every 4 weeks so maybe we go to 7 or 6.5 next time but not a chance of 5. I feel fortunate having gotten from 20 to 7.5 in 3 months but recognize now we throw the brakes on.

[DorsetLady PMRGCAuk volunteer in reply to NCStateLine]

Two week on any dose is really not long to know it sufficient before you reduce, it can take that long for a flare to materialise.

Plus at 7.5mg or thereabouts, your adrenals begins to realise they need to start working again… and for some that can add in extra problems.

So as you say, slowly does it.. for 2 reason, PMR and adrenals….

[Rubha in reply to NCStateLine]

Thank you for your reply…..I am really lucky so far with no flares and a very knowledgable and understanding GP. I have not been referred to a rheumatologist (I live on an island and the rheumalogist only visits our local hospital every 2 to 3 months. I wish you luck on your PMR journey and hope we can both taper slowly and successfully.

[Bcol in reply to NCStateLine]

Hi, you have done really well to get to this point in four months, but rushing the next stage could well put you back where you started and undo all that good work, particularly with the warning signs you got at 7.5mg. Personally (also male), I would be looking at staying at 7.5mg for five weeks and then a 0,5mg reduction over a five week taper. I use a five week DL taper (Lots of examples in FAQ's). This will also help your Adrenals get the message that they need to wake up again.

[Rubha in reply to NCStateLine]

Hello NCstateLine. My GP ,I haven't seen a rheumy, is very much the go slow type. She has advised if I get to 10mg with no flares it's a dead slow approach after that and could take a few years. Im happy to go as slow as it takes .