My friend hasn't been able to figure out how to ask questions on HealthUnlocked so I am asking for her. She was diagnosed with GCA in April 2024. She was put on Prednisone and once a month goes to doc for infusion of Actemra. She is currently on 15 mg of Pred and doc has her tapering 2.5 mg every 15 days. She said the lower she drops the more pain she feels and gets the throbbing in her ear. I suggested he had her tapering too quickly as with PMR that I deal with.
She recently had some bloodwork done that she doesn't understand, no doc call so far. Her C-Reactive is .09 and chloride is 109 and Total protein is 6.2. I didn't get any normal ranges from her. Her hair and eyebrows are shedding badly and her doc said it's because she's getting older. She is in her 70s. I told her to get a new doctor. LOL
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Dydee
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When the clinical trials were done with Actemra, it was for weekly injections, not the monthly infusions and they weren't approved for GCA. Unfortunately some US insurers refuse to reimburse the injections, only the infusions - which is a bit strange since they cost more as they cannot be self-administered like the injections.
There have been several people on the infusions who have found that symptoms return towards the end of the month-long interval between infusions. You should be able to taper pred faster when on Actemra but Actemra doesn;t work 100% for everyone. Half of patients have other mechanisms causing the inflammation besides the IL-6 that Actemra works on (it is very specific) and the patients continue to need pred to manage that.
It isn't uncommon for patients to find their hair sheds badly about 6 months or so after GCA but no-one has ever mentioned eyebrows but I'm sure it could happen. I'm appalled a doctor dismissed it as "aging" - how insensitive!
I think I would agree with your recommendation of a different doctor - but it probably isn't that easy is it?
Thank you so much for your response. I suggested she get the list of docs her insurance covers and do some research. And yes, insensitive and rediculous.
Not sure if I should start a new post or not but my friend recently had another infusion and doc said her bloodwork came back normal so thinks there is something besides GCA causing her pain. Not sure if it works the same as with PMR but normal bloodwork doesn't mean it has gone away. Just inflammation is currently under control. He is sending her for more tests, CT scan, etc. I resent her the part above where you explain how Actemra works/doesn't work.
Just because the inflammation isn't registering because of the Actemra doesn't mean the GCA is gone. As I said before, 2 other mechanisms at least may be at work that don't respond to Actemra and just because there is less inflammation doesn't mean that damaged nerves or other tissues have healed. However, it is good they are looking for other potential causes.
She said the lower she drops the more pain she feels and gets the throbbing in her ear.
Definitely signs of too fast a taper - and 2.5mg every 15 days even with Actemra [which as PMRpro has said doesn’t work for everyone] is foolhardy in my view.
My goodness, this friend of yours needs a new doctor and as soon as possible. I live in the States myself. I would call a rheumatologist for an appointment. I have been on Prednisone and Actemra weekly injections since 2019, It is painful for me to think of her reducing at that rate...and dangerous. Does she live near a teaching hospital in a large city? It took me from October of 2019 until February of 2024 to get to 10mg.
I have found that smaller the ERs in local hospitals in Indiana are about as aware of GCA as they are a three headed goat. Unless she can get to a large facility or clinic...usually a local ER doesn't shed much light. What about contacting a vascular specialist? Your friend needs to see a specialist before she suffers any permanent damage. Calling the insurance company is a good idea, but in my experience a name, a tid-bit of information isn't enough. She needs to advocate to them that their expenses and possible liability in seeing that she gets the proper treatment would be in their best interests financially. I'm a nice Grammy but a bull with the insurance companies. Please keep us posted on her progress. I don't want to frighten you or her, but mishandling of a taper does matter as well as time. My best....💞
just a random thought, but is it the whole of the eyebrows shedding or just the outside edges? If the latter it could be worth your friend getting her thyroid function checked - my mother loses her eyebrow edges every time her thyroxin is too low….Jane
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