Giant Cell Arteritis questions

@ceedub
Hi, hope you are doing better. I can’t believe they told you they were out of Tyenne I am on Tyenne but I wanted Actemera , couldn’t get it.
Crazy trip this is.

@ceedub I was diagnosed in November, 2020 and started tocilizumab/actemra infusions a few months afterwards. I have had several flareups, maybe one every 18 months or so, and go back on prednisone. I don't see an option. I think infusions reduce the frequency and intensity of flareups but I don't think they go away.

@cathie1 When I was on 13 mg. of Prednisone, I got my first Actemra infusion. It took a couple of months before I started feeling better. I've been on it for 20 months. Rheumy is planning on tapering me off starting in Jan 2027. There's a study that shows, if you stop taking Actemra after 1 year, there's a 50% chance of relapse.

There is no cure for GCA, only remission with no guarantee that it won’t become active again. I received monthly infusions for 5 years until my lab #’s normalized. Before Actemra I was on Prednisone but suffered toxicity from the high dosage which produced Parkinson’s like symptoms. My savior was Actemra. I truly believe after reading these blogs over time that no one shares the same symptoms.

@maddboat02 Can you clarify which labs stabilized for you?

@ropnrose Yes ,I totally agree.When I first experienced any symptoms it started as PMR but the Rheumatologist suspected GCA as well.Just slight sensitivity when any pressure was applied Omer the temple area.I was on Actemra infusions for one year and did well for about two years with no symptoms.This time I awoke one night with discomfort/ pain both temples and have been on Prednisone,significant doses since April.I have had four infusions of Actemra and due for the fifth in about ten days .Still symptomatic.Will definitely want to stay on Actemra for as long as needed.I think because it is a relatively new treatment for GCA much is being learned.

I think as a patient of GCA, which I am as well, we are at risk of blindness. So the objective for treatment in my health plan is to avoid that at all costs. Prednisone is a mess on the body no matter what, but do ask your doctor directly these questions. You have very good questions. The unfortunate answer anytime I’ve pursued detailed questions about this drug or that, the answer seems the same: who knows, listen to your body and if it doesn’t feel ok or you are in pain, then let’s reconsider the dosage”. The risks (blindness) outweigh the side effects of the treatment. No way to get around the fact we share a very serious autoimmune without much of an operator’s manual. For me, the downsizing of prednisone equals being dope sick, so in the past, I’ve had to remove many if not all expectations for having any fun until my body adjusts. Rest, and time seem to be the only recipe for feeling better. I sure hope you do, and find answers with your health care provider!

@clendenin Wow! Very well stated!! I've been dealing with GCA for only a year and HATE being on all the meds. It's already become a domino-effect...one medication causing another complication which needs to be treated with another medication, etc. etc. But like you, preserving my vision is top priority. All the best.

To share my story, I was diagnosed with GCA at 65 and put on prednisone. I chose not to take Actemra. So on 60 mg/day for 6-8 wks then 50, 40, 30, 20 each for a month then 17.5, 15, 12.5 each for 2 wks then from 10 to 2 mgs I reduced by 1 mg/month. I had cushings, insomnia, wt gain, etc. At 2 mg, my body was hurting n balking at giving up prednisone so I lowered by .5 only each month (1.5, 1, .5, 0). It took me 1.75 yrs. I gained 30 lbs. My CRP is staying normal now 2 yrs off prednisone. I set up appts w/ a cardiologist, carotid artery vascular dr, eye dr within 3 mo of starting prednisone due to its possible side effects. It's scary having GCA and dealing with it and each case seems so individual. We all just do the best we can.

@tryingtogetbacktome I will only use Prednisone. I had a couple of flares because doctors tried to taper me too fast. I'm going slow tapering 1/2 mg a month. I'm at 6 mgs. When I get to 5 I will stay there for awhile. I tried one injection of Actemra and ended up in the emergency room with breathing issues. The only side affects from Prednisone in the past year and a half has been weight gain and insomia. 20 lbs. The lower I get on dosage I am slowly losing the weight. Everyone is different, I just listen to my body.