Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

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Profile picture for elleninz @elleninz

@emrose
Hi. Best of luck with renvoq Let us know how it works. It seems I see a lot more renvoq use. I start Tyenne on Thursday. Tried to get actemra but my insurance company denied. Drug companies and insurance companies rule our world. We just pay 🙂

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@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.

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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.

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Profile picture for jabrown0407 @jabrown0407

@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.

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@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.

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Profile picture for shemil47 @shemil47

@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.

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@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.

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Profile picture for elleninz @elleninz

@emrose
Hi. Best of luck with renvoq Let us know how it works. It seems I see a lot more renvoq use. I start Tyenne on Thursday. Tried to get actemra but my insurance company denied. Drug companies and insurance companies rule our world. We just pay 🙂

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@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

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