A flare of GCA

[janno]

My husband was diagnosed in June of this year (2024) with GCA, unfortunately, lost complete and permanent sight in one eye, was treated with three days of prednisone infusions, started at 80 mg of oral preds, went on Actemra weekly injection and had been tapering off until down to 12 1/2. A few days ago we went to the emergency room due to a temporary sight loss in his good eye and went through the three days of infusions again. From all the tests that he had it was determined no damage was done in the good eye. I have read that a flare can happen when tapering, and I was wondering if anyone else had experienced a flare in that short a time after diagnoses, or in fact, have had repeat flares in a short time frame.

[DorsetLady PMRGCAuk volunteer]

Not personally no, but after sight loss my doctors were ultra careful with my tapering [no Actemra as it hadn’t been authorised in UK for GCA when I had mine].

Would say it is well documented that the first 6 months with GCA flares are more likely, although some studies say first 12 months ,... but flares can happen at any time if you go below the dose required for the GCA, and would say even with Actemra, getting to 12.5mg within 3 months is very quick. Obviously too quick in your husband’s case.

After the infusion in ER, what advice was he given regarding future tapering - or increase in current dose?

Maybe have a look at this -

ncbi.nlm.nih.gov/pmc/articl...

[janno in reply to DorsetLady]

Thank you Dorset Lady. I did neglect to type that he is now on 60 mg of oral pred. I don't know if his rheumatologist reduced his dose at that level because he was also on Actemra. We have an appointment with her in a few days.

[DorsetLady PMRGCAuk volunteer in reply to janno]

Good… and discuss tapering the Pred more slowly in future.. Actemra is brilliant for some, but it doesn’t mean you can gallop down too quickly with the Pred.

Quicker than without, but not at breakneck speed.

Hope all okay from now on… but with only one good eye, you have to be a bit more cautious [as I know] .. better take it more slowly than take a risk. Please impress that on Rheumy, she is too gung ho with someone else’s sight…

[janno in reply to DorsetLady]

Thank you, good advice.

[SnazzyD]

For some people Pred is still needed even with Actemra. This is because Actemra only counters one of the inflammatory cytokines, Interleukin-6. If he has other ones playing a significant part in his GCA, he may need the broader spectrum of Pred as well. As DL says, he is well in the risk window for flares normally so it may be he needs a bigger dose of Pred.

[janno in reply to SnazzyD]

Thank you for your response. The emergency room doctor put him on 60 mg and we have an appointment with his rheumatologist this week.

[PMRpro Ambassador]

It was very clear from the clinical trials that Actemra is only 100% successful for about half of patients in getting them entirely off pred. There are at least 3 different underlying mechanisms for the inflammation that causes the symptoms and sight loss and Actemra only works on ONE of them - it has no effect on the others at all. If YOUR GCA involves one or both of the others, you continue to require some pred to manage the inflammation and prevent a recurrence of the symptoms. It is also apparent that a lot of doctors are totally unaware of this fact and put too much trust in Actemra replacing the pred.

[janno in reply to PMRpro]

We had an appointment with Dr today and she discussed the possibility of adding yet another medication if it turns out that both steroids and Actemra do not work well. You made a strong point regarding Actemra not replacing the pred, or lowering pred because he is on Actemra. Thank you for your reply.

[PMRpro Ambassador in reply to janno]

If it is GCA then steroids will work well but ONLY if the dose is high enough. And that means very careful tapering, avoiding overshooting the dose you need. Do that, and it obviates the need for yet more polypharmacy which can also be dangerous. Suppress the immune system too much and you are at risk of infections. Then you have to stop the other immunosuppressive and Actemra until recovered and rely on pred to protect your sight. Sometimes pred at a slightly higher dose is far better than throwing all your toys at it and causing other problems.

[DorsetLady PMRGCAuk volunteer in reply to janno]

What does she mean steroids and Actemra do not work well? As PMRpro has explained Actemra is not the 100% bullet that some doctors seem to think… but steroids most certainly work. But they have to be at the correct dose of course.

My GCA was treated solely by Pred [Actemra had not been authorised in UK at that time]. Agreed I had already lost sight in one eye due to being undiagnosed so therefore not on any medication, but it saved the sight in remaining eye [as it did your husband’s]. But to make sure it did, I was on 80mg per day for 2 weeks, and then once ophthalmologist was happy, was on 60mg for another 8 weeks before starting tapering proper.

[janno in reply to DorsetLady]

The Dr. said that the Actmera takes 8 weeks to work and he has only been on it for 4 weeks. Due to the fact that he has type 2 diabetes it can get a bit complicated with the high doses of prednisone, otherwise it would make sense to me that he would be on a high dose for a longer time and wish that were the case. As far as being told that there were options, I hope that it does not become necessary.

[DorsetLady PMRGCAuk volunteer in reply to janno]

Okay - yes diabetes and Pred do make life more difficult...

[PMRpro Ambassador in reply to janno]

It isn't as black or white as that - why do they think it is? It will start working quite soon but it is safer - especially with GCA and the threat of sight loss - to make sure it is well into the system. And it MIGHT take more than 2 months.

[janno in reply to PMRpro]

Thank you, just as you said, we are finding that absolutely nothing is black or white regarding my husband's GCA and his treatment.

[Grammy80]

I confess.....when I read he was taking 12.5 along with Actemra after just being diagnosed in June...I just took in a sharp breath. So fast~! I was diagnosed, finally, in August of 2019, lost sight in my left eye and began my journey of Prednisone and Actemra. I'm in the States and see you are also. Luckily I found this forum that has done so much for me and you will always find support and knowledge. I found the UK light years ahead of the State re: GCA.

I never got to ten milligrams of Pred until 2024 and slowly, .05 per month along with Actemra got to zero in late June. Unfortuantely, by the end of July, even though I stayed on Actemra weekly, I was in a flare which is now matching my original onset and am taking 60 mg per day, Actemra. My neuro-opthalmologist ordered three days of 1250mg IV infusions because I was losing peripheral vision in my right eye. I am now just a day to day semi-mess with blurred vision which may be the pred. Who knows. I see my rheumy on Monday and it will be super interesting to see what he has to say.

My message is one of hope but also one of extreme care, especially since your husband has lost sight in one eye. He can do it, but as you have read, slowly. Sometimes I would stay on that reduced dosage 6-7-8 weeks....until I felt solid...balanced...trust your body. If there are any niggles at all....slowly. Learning on the forum gave me the backbone to tell my rheumatologist I wasn't ready to decrease. I'm almost the same age as your husband and I know I feel the impact of the steroids more than I used to. My best.💞

[janno in reply to Grammy80]

Thank you for your reply. I am so appreciative of the responses that I receive.

We had an appointment with the rheumatologist today and she will be tapering more slowly. In the meantime, my husband is still on 60 mg and Actemra. There was some discussion of the possibility of adding another medication if the need should arise. My husband also has type 2 diabetes which complicates things. Do you still drive, and if so, do you have any issues with it?

[DorsetLady PMRGCAuk volunteer in reply to janno]

As Grammy80 has mentioned I drive, it does take a time to adjust …here’s a couple of posts I wrote - which might be useful for both of you -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk....

[Grammy80]

When I first lost sight in the left eye, it was such an adjustment. At that time, I sold my car and knew I wouldn't be comfortable driving. In January of this year, I decided that I would try to get my license. Having one eye was no issue at the License Bureau, I sat down and took the written exam re: laws and only missed one. Whew. Unbeknowst to me, my previous license had not expired, so they gave me the license~!!

I called a Driving School and after the second session, the instructor was happy and I felt comfortable and confident. Because I hadn't driven for four years I wanted to practice parking, driving to our small downtown area, the Senior Center where I attended and the hospital and doctor offices. My brain was wired to drive. Most all of the places I wanted to go were in a four mile radius. At that time and until I flared, I had no issues. I think the use of all mirrors was an important lesson...but if vision is clear...it sure can be done. I pretty sure that DorsetLady drives ~! Good luck and not to worry💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

I do, and have done apart from the first few months after initial sight loss…but that was partially due to high steroid dose, as well as brain adjusting.