Finally at 30 numbers stop rising

[Nap1]

Finally at 30 numbers stop rising. Went from normal at 11 then at 10 things went haywire. Went back to 12 and 20 and then 30 mg. Finally at 30 mg ESR is 37 and CRP is 0.94. I was up considerably higher until I took the 30. Will stay on that probably until I get to the vascular specialist (rheumatologist) in New York City which is scheduled for April 26. I am just wondering because I have been on high doses for two years what is the possibility of reducing after four weeks. Then again have this move to make on April 18 from Florida to New York I am only trying to keep some of these steroid affects down. Think I will wait until my next blood test which I will take in a few days to make sure the numbers are still going down. What are your thoughts? Thank you. PS. The Clonopin a.m. and p.m. does help but the steroid rage is worse now than when I started with GCA On 40 mg

[DorsetLady PMRGCAuk volunteer]

Hi Nap1,

Would suggest you do not reduce before your move, even if your bloods are okay. Moving is always stressful, and the last thing you want is to reverse the trend.

In fact I would stay at 30mg until you have seen your new specialist, after all that's only a week more. That gives your body's inflammation plenty of time to settle down. Plus when you see Rheumy, don't let him railroad you into too fast a reduction plan!

Good with your move!

[Nap1 in reply to DorsetLady]

after 8 Rheumy's trying, it won't happen. I think the combo of my stress plus the move from 11 to 10, when I only do 1/2 at a time did me in. That was the first time I ever listened to a Rheumy after finding this website 2 years ago and see what it got me. Thanks. DorsetLady.

[cjatthesea]

Nap1...must admit, I don't remember your entire situation but would definitely agree with DL. After 28 months....I am at 35 mg Prednisone. Have dealt with approximately 10 Flares that took me to the ER. My markers are always good but even when tapering very slowly, I manage to go into a Flare. Recently when picked up the CRUD ( a cold and little sinus problem ) and then took the road trip from home in South Carolina to Winter place in Fl. Aggravated my already misbehaving back. Have now been bedridden for three weeks and gone from 29mg back up to 35. Have no plans to taper again until my back is better, my second cataract surgery is done, etc. Am just waiting it out. Scalp pain is not totally gone at this time. Sometimes feel like GCA/PMR are winning but can't do battle with them. Back and forth from 60 to 20. Now, had trouble getting down from 40.

Hope you are able to take it easy. Stay as stress free as possible. With a move, that won't be easy.

Best wishes to you, CJ

[Nap1 in reply to cjatthesea]

Thank you. This is my first flair where I couldn't get it under control until going back to 30. Started at 40 in June 2015 with GCA. Had PMR for three years Prior. I'm convinced the stress level is what is doing this. Doubled up on my Clonopin it is helping but I get very uptight and angry from the prednisone. Am trying to stay calm.

[piglette in reply to Nap1]

Dear Nap1, I do hope you get your flare under control. Do be careful taking too much Klonopin though, it is a benzodiapine and it is not a good idea to take it for any length of time if possible.