Major flare gca

[Nap1]

For PMRpro and anyone who feels free hop in. I have been ok on Actemra twice monthly also 9 mg pred. Stopped the Actemra for two weeks for eye surgery and every muscle is useless and vile pain. Had dvt and pe and have been on blood thinners. Off now. ESR 47 CRP 12. In one week. ESR Was 7 and .06. Major flare. Just don’t know how much to go out to. Thinking 20 should do it. So tired of this gca since 2014. What do you think?

[PMRpro Ambassador]

What a shame - and what an experience! Hope you recover well - I'm a bit surprised you are already off the anticoagulant therapy though.

Your high ESR and CRP are also partly due to the DVT, it also raises them both, so not entirely due to a PMR/GCA flare. As for the pred - you can only try 20mg and see if it is enough. Once you are out of pain then you could try 15mg to see if that are still enough. Has the hospital not told you what to do? I'm also surprised you didn't get extra pred during the procedure since you couldn't have the Actemra.

When will you be able to restart the Actemra? Have they said anything about that?

[Nap1 in reply to PMRpro]

I did not have the eye surgery since it was out of state and I was in so much pain I canceled it. I restarted the Actemra Wednesday. The clots dissolved and the hematologist made we aware of the risks. Honestly I don’t care. Life is too tough. I sold Florida house and am in New Jersey. Have to close and can’t get down to clean it out. I think the stress from the clots, my badly needed knee replacement (can only walk with walker) and the move and the anticipated second eye surgery was an invitation for the inflammation to sneak in quickly and wrack my body with pain. Very tired of all this. Thanks for your quick response. How is Italy treating you these days. Marilyn

[PMRpro Ambassador in reply to Nap1]

Rather warmly

[Nap1 in reply to PMRpro]

NJ too. Hottest July in history. Sure will be looking for that in January.

[PMRpro Ambassador in reply to Nap1]

It was even warmer in Albuquerque last week!!! Aifcon was a bit too efficient at the conference too

[Nap1 in reply to PMRpro]

Were you in New Mexico last week

[PMRpro Ambassador in reply to Nap1]

Must be the week before last now!!! At a science meeting.

[mngirl]

I had knee surgery and was off actemera 3 weeks before and 2 weeks after. restarted actemera and 6mg pred. Tried to go to5.5mg after 2nd actemra injection. Went back up to 6 because I had done well on that ( 8 weeks). Did not work . After 4 days I was sure, it was a flare not withdrawal. Contacted dr. he put me on 10mg for 2 wks then9,8,7,6, each for 2 weeks. It worked. I am back to 5.5mg. I am doing well. I think it took 3shots of actemra to get back on track. It just took that long for inflammation to get under control. I have been very happy with actemra results. My crp was1.05 (standard is to .08) sed was 17 (standard is to 18). This is what worked for me. Hope it helps

[Nap1 in reply to mngirl]

Thank you. We’re you doing every other week with he Actemra ?

[mngirl in reply to Nap1]

Yes, and when I changed dose, I did it the day after my injection. My thinking was the actemra would be a help the transition.

[Nap1 in reply to mngirl]

Yes makes sense. I do the same. I haven’t been this ill in a long time. It came as a surprise. I though GCA burned out. I can see now it’s always lurking. I was on 9 going to 8 1/2 when I had flare. I have been at this number many times before. But I do have adrenal insufficiency so I am not sure when something might happen. Even though adrenals are only supposed to need 5 it varies with me. So it’s been a motorcade/ sleigh ride since 2014 or 15 I don recall.

[PMRpro Ambassador in reply to Nap1]

It does burn out - but being able to reduce to zero without symptoms is the sign it is burnt out and that tends to take a good 5 years judging by the majority of people I have known and sometimes more. And I suspect every time you flare it adds a bit ...

[Nap1 in reply to PMRpro]

That’s good to know. Did you see the painted dessert when you were in New Mexico?

[PMRpro Ambassador in reply to Nap1]

Afraid not. We were at a meeting working. Normally we add a week for a holiday while we are there but when we booked even getting there at all was looking a bit rocky!!