Now P M R: I've had G C A since Dec.2014 with three... - PMRGCAuk

PMRGCAuk

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Now P M R

saunders123
saunders123

I've had G C A since Dec.2014 with three or four flares and uti infections on a regular basis,In 2015 i spent two weeks in hospital with sepsis and portal vein thrombosis.In July this year I started getting muscle pain in the top of my arms and pain in my neck at this time I was on 3mg prednisolone I thought It was withdrawal symptoms , last week I was due to drop to 0.1 mg and pain appeared in both shoulders, so went to see my gp last Monday. She confirmed PMR wanted to start me at !5MG for two weeks then dropping by two&half mg every two weeks.I was not happy with this, I feel I've had this coming on for a while and It has been masked by the high dose of steroids.My esr and crp levels doubled in September .I would like to try 10mg for one week then drop to The number I was comfortable at 5mg. Any help or suggestions gratefully received.

Thank you Jean

5 Replies

Personally I don’t think your GP’s plan will relieve this. You have been through such a lot. Please stand firm on a higher dose and a much gentler taper, unless there are extraordinary health reasons why you cannot tolerate that. I would also want all my symptoms to settle before I reduced at all. That might take a month or so. Then I might reduce at 1 mg per month or even 0.5 per month ( pill cutter). Look for the dead slow nearly stop method on here or similar. You are much less likely to flare. Good luck!

re: "My esr and crp levels doubled in September ." This suggests a flare of the GCA. My vote is per your suggestion go with 10mg pred at this time. If this doesn't control the symptoms you can always go to 15mg. Tapering at 2.5mg per 2 weeks from 15 to 10mg.; then 1mg/month below 10 mg.

My experience of GCA/PMR sounds similar. GCA Jan 2015, and started developing pains in arms and legs earler this year, which my consultant thinks is PMR.

I've been trying to get below 9 mgs, but the pains won't go away, so I'm reluctantly concluding I need to increase to 10, possibly 11 to see if that helps. It's so frustrating and depressing.

PMRpro
PMRproAmbassador

I think 15mg is a bit OTT for a PMR-type flare when you have been fine at much lower. A lot of doctors say add 5mg to where the flare happened so 10mg would be plenty to see if that is enough first. Though I don't think I would drop straight back to 5mg, 6mg maybe.

saunders123
saunders123 in reply to PMRpro

Thank you so much for all your advice. I started 10mg on Wednesday and all pain had gone by the next day. I think I will stay at 10mg for a week then try 6mg at your suggestion PMRpro If pain returns I will try 7.1/2mg.Thanking you once again for your help

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