Reduce 5 or less

[Nap1]

So just took ESR and CRP. CRP normal waiting on ESR

Had to go up to 40 because of eye infection. Blood markets went up and I got scared. I have been up-and-down since 2015. Recently had Eye surgery then got ear infection. Then pulmonary embolism. So I am on blood thinners and 20 mg of prednisone and Actemra. In order to get this Eye fixed that went bad once I upped the steroids I need to reduce to 10 mg of prednisone. I have been reducing from 40mg by staying on the 5 mg for 10 days. It’s worked well. Now at 20 I would like to go to 15. I think I have enough prednisone in my body to save an elephant. What does the jury say 20 to 15 sound reasonable. Actemra is carrying the ball. Once I get to 10 I can think about what to do with the Eliquis. I know I have to stop the Actemra. Eye Dr. the best in the US at Bascom Palma and he says I am the most difficult case. I am beginning to find myself difficult too. Rheumatologist has been OK with 5 mg drops at a time. Can’t explain this any better but you know I am waiting for a knee as well. I will of course talk to NJ Rheumatologist as well. But you folks count ALOT And in my opinion know more then all the Rheumatologists put together. Thank you I will find out the ESR tomorrow a.m. and do my reduction after I hear from you and speak to my rheumatologist. Thank you again

[Soraya_PMR]

What dose pred before you upped to 40?

Did you up yourself? Or was it docs instruction? Because infections will put your blood levels up, did you have any PMR/GCA pain increase?

[Yellowbluebell]

The suggested taper from the forum says no more than 10% of your current dose. Going down to 15mg is a jump of 25%. Has your taper been suggested by your gp or rheumy or are you doing this on your own? If it was me I would be looking at 12mg/12.5mg.

[PMRpro Ambassador in reply to Yellowbluebell]

Actemra makes a difference there though

[Yellowbluebell in reply to PMRpro]

Does it make a lot of difference? I was just basing it on pred alone.

[PMRpro Ambassador in reply to Yellowbluebell]

Yes - the Actemra cuts the production of the inflammatory substance IL-6 and that is a significant part of PMR: for probably half of PMR cases it is pretty much 100% of the story and for the rest it reduces the need for pred significantly. Unfortunately some doctors only know the first half of the story! You MAY still get withdrawal symptoms and smaller drops are better in that sense but you should be able to reduce far faster with Actemra on board.

[Dream21]

I wanted to give you my support on your journey.

[PMR2011]

Yes Nap1 if you have had a series of infections those can definitely account for raised markers, though I am wondering how your CRP could be raised with Actemra on board as that drug usually takes CRP to almost zero. Once well established on Actemra I tapered 5mg every 2 weeks until I got to 10mg then slowed to 2.5mg every 2-4 weeks more because of withdrawal symptoms than because of disease activity. Your situation sounds pretty complex, maybe best to have your physicians weigh in on timing.

[PMRpro Ambassador in reply to PMR2011]

Only if the raised CRP is due to inflammation caused by IL-6 - and there are other causes of hhigh CRP besides GCA

[Nap1 in reply to PMRpro]

Am aware of CRP and I.e. heart issues. Actemra was stopped 2 weeks before eye surgery and was about to start 1 week after surgery when ear infection arrived. Could not get back on Actemra until infection gone. That’s why the markers went up. Back on now took my second shot Saturday (every 2 weeks) and my numbers are good. So yesterday reduced to 15. What’s confusing is perhaps with infection or illness markers should be given a chance to recede themselves without jumping the gun to 40?

If all goes well and I handle 15. Next would be 10. That’s presuming a lot for me. What is a killer is being told that I most likely will not be able to do the knee because of the blood thinner. It is painful and debilitating. I am a difficult case. Not giving up yet. How is the pacemaker doing. Glad you got yourself on Actemra. Really makes a difference if it is tolerable. Seeing Hematologist for embolism.

His opinion will be crucial in determining any surgery to the knee.

[PMRpro Ambassador in reply to Nap1]

I'm not on Actemra and given the complications I suspect it is unlikely we will risk it. Who knows though. The a/f is posing enough problems!!!