Questioning my doctors decision that I’m in remission

[nallufl24]

I’ve been on Actemra for almost 2 years with excellent results. I felt like myself pretty quickly. 6 months ago rheumatologist halved my dosage of monthly infusions. Still felt great. Then he wanted me on infusions every 8 weeks instead of 4. After the 6th week with no Actemra I started with headache, ear, and neck pain. I slept a lot. The pain wasn’t constant and some days I felt pretty good. Sometimes Tylenol helped, sometimes it didn’t. At 8 weeks my blood work was normal. My ESR was elevated but still in normal range. I then had my 8 week infusion and once again the results were immediate. No pain, no tiredness and back to normal again.

Doctor still wants me on infusions every 8 weeks because my ESR is still within normal range. He continues to think I’m in remission. I don’t agree. Why would I have those symptoms and then they disappear after my infusion? Even though ESR was in normal range, it still went up. CRP was fine.

Any thoughts?

[DorsetLady PMRGCAuk volunteer]

To be honest the only way anyone can say you are in remission is to finish all meds and be symptoms free for a number of months.

Trouble is, in medical terms, remission mean the symptoms are under control but not that you are necessarily free of the underlying illness -and that’s not what we mean by remission.

Semantics maybe, but can lead to disappointment on patients behalf.

Actemra also keeps the blood markers low … again doesn’t mean underlying illness has gone.

I agree with you …

[nallufl24 in reply to DorsetLady]

Thank you for your quick response. I just feel leery because I blame him for a relapse when I was only on prednisone. My inflammation markers kept getting higher even though in “normal range”. He continued to have me keep tapering and I didn’t know any better. I never heard of GCA til I was diagnosed. So I kept tapering. When I got to 10 mg I was in a full relapse and had to go up to 40 mg to get it under control.

[SnazzyD in reply to nallufl24]

Ouch

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

Not helpful.. and totally unnecessary on his behalf..

[Nap1 in reply to nallufl24]

Interesting in 2017 I was part of the Actemra trials with a doctor in NJ. Very good rheumatologist. After a while I went to a doctor in Manhattan, who was a big deal I

Mother study and he reduced me very quickly and my flare was horrible. I too, had to go back up, and even though he was famous and supposedly knowledgeable. He screwed up big-time. I am still on fairly high doses of prednisone and Actemra. We are going back seven years. So my guess is the disease is still active and it’s the Actemra that keeps the numbers down.

[PMRpro Ambassador in reply to Nap1]

How much pred do you need?

[Nap1 in reply to PMRpro]

I am reducing from 20. At 18. Finally found a rheumatologist after 10 years and hundreds of miles of driving. He is probably going to retire soon. My neurologist is his daughter in law. I now have neuropathy. So walking is really difficult I’m on Actemra weekly. Also veins in legs are not good. GCA is active and of course blood is good. I tried 15 NG. Steroid myopathy and all the rest….no fun.

[nallufl24 in reply to Nap1]

I know Actemra keeps the numbers low. I haven’t been on prednisone now for 15 months. I have felt great the entire time I’ve been on Actemra. It was when doctor wanted me to go 8 weeks until my next infusion that I started to get symptoms. I don’t care what my blood work says. I know when things just aren’t right. I’m angry that my doctor is only going on blood markers. He should know better. I live in a city where people come from all over the world to get medical care. He’s not some fly by night doctor. He is affiliated with a well known hospital in this area and supposedly specializes in Vasculitis. I’m assuming my GCA is still there in the background but he is celebrating my remission. Go figure. 🤷🏻‍♀️

[PMRpro Ambassador in reply to nallufl24]

If he's going on markers - totally out of his depth!

[Devoid in reply to nallufl24]

Hi at least he called it remission, my rheumatologist basically told me I was cured , even discharged me, only to be back after just a few months. Now after 4 and a half years feel like it might be in remission, on actemera and new rheumatologist not in such a hurry to get me off it .

[PMRpro Ambassador]

He is almost certainly wrong. And he has form doesn't he!!! Drug-induced remission is not full remission, You get there when you can stop all medication and no symptoms return after some months.

He fundamentally is misunderstanding what normal range is: it is the range of levels found in a large population of nominally health people which includes 95% of those figures. It is NOT the range of levels that are OK for a single person, we each have our own normal. Mine is low single figures, 16-18 during a flare is still with in the quoted normal range, but it is very high for me, And since you are on Actemra, when it is working, the ESR and CRP SHOULD be low. If they wriggle up - something is going on. GCA is not due to only IL-6 mediated inflammation, there are at least 2 other mechanisms that create the inflammation and Actemra doesn't work against them.

Good luck!! Big people who become true experts admit when things aren't right ...

[nallufl24 in reply to PMRpro]

Thank you. I don’t understand his reasoning. But at least I feel a little more knowledgeable to speak up.

[Nap1 in reply to PMRpro]

PMRPro I do love your honesty❤️and the fact that you are always right.

[Larachez2102]

hi did you have any side effect. Sue to start my injection tomorrow

[nallufl24 in reply to Larachez2102]

I have not had any noticeable side effects from Actemra. I always had borderline high cholesterol but it became very high on Actemra so I’m on a cholesterol lowering drug. (Rapatha)

[PMRpro Ambassador in reply to nallufl24]

Yes - that is the one thing I have had with Actemra. One cardiologist got very iffy and persuaded me to take a statin again - against my better judgement. I was right - had a big flare, SO the rheumy provided ezetimibe which lowers it somewhat.

[Larachez2102]

thank you so much. Iv been on a few biologics and have a some nasty side effects. Methotrexate being the worse. Xx

[PMRpro Ambassador in reply to Larachez2102]

MTX isn't a biologic - it is a DMARD, a disease modifying antirheumatic drug. So probably were the others?