Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

@elleninz I started Tyenne in January. My doctor Dx GCA in early Nov and tried to start me on Actemra then. I declined once I did research and learned that it was being removed from every Formulary List and replaced with Tyenne. I did not want to put my body thru the challenge of changing drugs when I could wait a few weeks and prevent that. I had asymptomatic GCA so did not need the 60mg of prednisone, etc that most patients require.
Please know that Tyenne has the same active ingredient in it that Actemra has. Technically it is not just biosimilar it is bio-identical. In the world of biologics the only difference I found between the Actemra, the Brand product, and Tyenne, the bio-similar product, is the formulation of the inactive components. This is definitely not true with all bio-similar drugs.
I would suggest you keep notes on changes your body is experiencing with Tyenne injections. I have several, changes in BM's, changes in pain - more old-age type pains in joints rather than PMR pains, increased fatigue, interaction with my thyroid meds, etc. For now the side effects are manageable. I am at a steady state - about 8-10 weeks worth of injections gets you there. I should start my prednisone taper by the end of the month. The other suggestion I have is I started reacting locally with each Tyenne injection. My doctor suggested I ice the injection area for 10 minutes pre injection and 10 minutes post injection and it works perfectly. If you have problems see if your doctor is OK with icing. Please keep us posted.

But once you are on high doses of prednisone, you most likely will get a false negative temporal biopsy result. That’s what happened to me, and I am being treated for GCA.

@jabrown0407 Hi are you feeling any better on Tyenne injection . I have been on it for 6 months for GCA with no change in anything except I get quite tired and hungry. Do you know if it is doing any good. I am also taking Prednisone and Methotrexate.

@shemil47 Yes, I am feeling better. Many of my symptoms are better, a few are very slowly getting better. I log the pain lvl weekly on joints and other pain points to see the progress, otherwise it is too subtle to tell week to week. I will have labs run next week at 9 weeks on Tyenne to see what they say. Fatigue is a common side effect of Tyenne - and I have it in spades as well. I am on 10mg prednisone and expect my Rheumy to start my taper when I see her later this month. I wish you success on your journey. Thank you for asking.

@elleninz Sorry to hear that. I too, as so many others, see the tail of health "insurance" (HA!) wagging the dog of American healthcare. I was fortunate in that my insurer, a Humana Plus Medicare management plan, approved and covered Actemra, and with a hospital discount as well, I'm paying a few hundred a month for an infusion that's saving my life. But what a struggle! Carry on...Best wishes

@charann2000 I was diagnosed with GCA w/ Temporal Arteritis 10 months ago and it has been an interesting journey. The Ophthalmologist I am seeing knows very little about it and he is making it up as he goes which for me is very frustrating and scary. For me my vision was affected extremely badly. I have maybe 20% vision left in my Right eye and maybe 50% to 60% vision left in my Left eye. When it came on I didn't know what it was and I delayed in getting treatment and by the time the Doctor realized what it was the damage had been done. My primary Doctor thought my vision loss (blurred vision, double vision, blind spots, darkness, etc.) was a temporary side effect to a medicine I was taking for my PTSD and Anxiety.

I have had a three dose round of high dose Prednisone Infusion when I went into the hospital for three days of testing and treatment in Sept 2025. Since then I have been on Prednisone tablets 60Mg per day. A month ago ago I went to the ED with pain in my lower legs and was diagnosed with DVT blood clots. I am now on Apixaban in addition to all my other medications.

I am now tapering off of the Prednisone. I started at 60Mg a day and I am right now at 30Mg a day. The Prednisone is being augmented by Methotrexate once a week.

I have an appointment with a Rheumatologist next week and he may put me on Tyenne but I will find out when I get there.

As I mentioned above my vision has been affected the worst and it is very frightening. What I have lost I will likely never get back and my Doctors are trying to save what they can. I am trying to adapt as best as I can but not knowing what to expect is the worst part of it. My Ophthalmologist is not helping because he is out of his depth with this. Unfortunately, where I live and the medical coverage I have I can't easily go to another Ophthalmologist so I am trying to stay hopeful and doing the best I can.

I am curious to know what the GCA did to you? Did you have vision loss or did you develop other issues? Apparently severe and extreme vision loss is not common with GCA so I am severely lacking for information. If you want to share from your journey I would look forward to reading it. You can post here or DM me. Good luck to you.

@alandy233
Hi, I am sorry to hear that you are experiencing extreme loss of vision related to your temporal arteritis. Going to a Rheumatologist is the best thing you can do, more so than having an Optometrist try to treat you. You really need to have a referral to a Vascular Surgeon in order to have a sample taking of your temporal area to really get an accurate diagnosis of what you believe you have. Your Rheumatologist can make this referral for you.

To clarify my situation, I thought I had Temporal Arteritis, but it was not. I had one terrible occurence which I went to the ER and they ran massive bloodwork tests, primarily sedementation rates. Through the course of the past eight years whenever I feel it possibly acting up, I drink more water and take an Excederin Migraine pill (OTC) and try to calm myself down. This has usually worked for me. It is pretty scary stuff to have the feeling come on, especially with potential loss of your vision.

I also went to Optomologist/Surgeon after going to the ER and my ENT who said I had no visionary damage and also did not feel that this was Temporal Arteritis. I still do wonder to myself when these rare flair ups occur but luckily for me they are manageable.

I hope that you do not suffer any more vision loss and that you continue to receive treatment from a "qualified" Rheumatologist. Don't waste your time on doctors and optometrists who do not specialize in this field, they are only trying to grab a piece of the pie....no one can wear too many hats successfully!

@charann2000 Thank you for your response and for the information. This helps and gives me a few more pieces to the puzzle.

I have been a member of this group for the past 6 or 8 months and have benefitted a lot from it. There are a lot of great people here. I have also posted 8 or 10 times about my struggle with this GCA and vision loss trying to understand it and figure out what is going on. Something you maybe did not see in my earlier posts is that I do have an appointment with a Rheumatologist and it is next week. I am hoping to get more answers and more piece to the puzzle as well as perhaps formulating a better treatment plan but we will see.

I will continue to post here and thank you again for sharing.