PMR

[Gran6]

I took your advice about upping my steroids to 5or 10 mgs .Having had positive GCA in September 2016 been reducing steroids quite well down to 1mg last month and Rheumatologist said to stay on 1mg until he see me again in October two weeks ago had very bad aching shoulders neck ,buttocks top of my legs and sweating ,rang the Rheumy twice and left messages to ask if it could be PMR,I was in great pain ,I had a blood test last week and had a call from my GP saying my inflammation markers had risen quite high and he agreed that my symptoms and raised markers it was most likely PMR and he upped my steroids to 25mgs and said to drop 5mgs a week but to go back up if the pain got worse,is 5mg to much a week ? and I am still waiting for the Rheumy to get in touch .Thanks

[HeronNS]

I personally think increasing to 25 mg is overkill. As 15 is a usual starting dose for PMR and you've been as low as 1 I think it would be unnecessary for you to have to go so high. What was the last dose you felt well at? Why not go back to that dose plus 1 mg? Or if it was as little as 3 that you felt well, add 5 to that dose for a few days, then drop quite quickly down to 3 and stay there for a while before attempting a new slow taper? Just a suggestion. Seems like that might be easier on your body than a jumpt to a high dose!

Others may have other suggestions.

[Hidden]

Hi gran6, what a pain! Sorry you now have to suffer PMR too. I am aware that 5mg reductions are common at 25mg, but you must ask the Dr to let you do it as it long as symptoms don't come back. And of course the GCA is steady as she goes. But once you get to 15mg you should be thinking 10% and dsns method. Has the 25mg removed all the symptoms?

[Gran6 in reply to Hidden]

No too bad just a slight pain in my right shoulder which goes with paracetamol but always have this weakness in this shoulder after I was brought down from 60 mg to 40 mg in one go by another GP when first diagnosed with GCA,I am lucky that I have three springer spaniel that keep walking twice a day,but the last two weeks where bad feel so much better now or though tired but I know what to do about that REST .Thanks for you help I will keep you posted

[Hidden in reply to Gran6]

Please do. The dogs are very helpful to help keep going. You are brave with 3 springers! 1 working cocker is a handful!

[PMRpro Ambassador]

You will probably get away with 5mg a week for the first couple of weeks - since as HeronNS says, 25mg was a bit OTT! But once you are at 15mg slow down a bit.

I see I suggested trying 5 or 10mg first, did you try that or did you need the 25mg to get it under control?

[Gran6 in reply to PMRpro]

I did need it ,I should go down tomorrow to 20mgs I will give it a try .Thanks

[PMRpro Ambassador in reply to Gran6]

Then be careful as you go down once you get below 20mg - 5 mg every week might be a bit much if that is what he said. Did he tell you what dose to go back to?

[Gran6 in reply to PMRpro]

Yes he said down to 20 and if pain came back to go back to 25 mgs.

[PMRpro Ambassador in reply to Gran6]

And the next time try 2.5mg at a time. Sometimes the return of pain is more because the body didn't get the dose of pred it was expecting than that it is the PMR/GCA playing up.

[Gran6 in reply to PMRpro]

Thanks for you help much appreciated

[Blearyeyed in reply to Gran6]

I agree with Pro , you've hit the pain on the head with 25mg , if the 5 mg is too much , do it in 2.5s instead .

[jinasc]

Good advice.................but you probably needed to go back to 25mg because of diagnoses with GCA in the first place.

Be very careful, GCA is still there............it has not gone into remission.............slowly does it and I mean slowly. As PMRpro says 5mg per week is not a good idea.

[Mikb]

The same thing happened to me. Diagnosed GCA. Got down to 1 mg and started having pain. Regular blood tests showed high CRP. PMR diagnosed and i was put on 25 mg for 1 week, then 20 mgs for 1 month then reduced by 2.5 each time to 10. Now reducing by 1/2 mg every 2 weeks. Currently at 9. So far so good.

[HeronNS]

Sorry, I should have checked, didn't realize it was GCA. Remeber what we say - only 10% dose reduction at a time. From 25 mg that is indeed only 2.5 mg.