Has anyone tried Actemra for GCA and what was your experience?
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I was diagnosed with GCA in January 2020 – my sed rate was 117 – and immediately started taking 40 mg. of Prednisone daily. On 2/13, that dosage was increased to 60 mg. because my sed rate was still high at 61. Because I am a Type II diabetic, and the Prednisone had almost immediately elevated my blood glucose test results, my rheumatologist prescribed a second diabetes medication and also prescribed Actemra to aid in tapering the dosage of Prednisone. I began getting weekly Actemra injections (by ACTpen) on March 6. On 3/12 my Prednisone dosage was lowered to 50 mg. – my sed rate was 35. On 3/20 a third diabetes medication was prescribed – I now take Metformin, Januvia and Glimepiride – because I am still having wildly fluctuating blood glucose test results – 80 to 377). Saturday I woke with my first ever low blood glucose result – 69 – that was scary.but, fortunately, I had been told what to do and coped. If my next lab results show my sed rate is continuing to lower, my dosage of Prednisone is to be lowered back to 40.
I am almost 80 and live alone in an adult gated community, but have family in that same community who call me frequently and deliver food to my door. I exercise by walking the circuit of my large patio, using my walker for safety & stability. My doctors have told me to stay at home and isolate myself. I do that except my daughter-in-law administers the Actemra injection once a week – because my hand strength is lacking due to my trigger finger problems caused by the Simvastatin I have taken for years.
All my issues seem to be related to Prednisone; I haven't identified any related to the Actemra. Here are links to some info about Actemra and GCA you might not have found yet:
Reading over what I've written – sounds depressing, but my small home is on a golf course with a marvelous view that gives me continuous joy. Before coronavirus hit, I delighted in sharing that view of trees, water, golfers, even a small waterfall, with others. My sister's Canadian relatives especially appreciate it – and our sunshine – when they visit. I look forward to being able to have visitors again!
Hello @paddington, Thank you for the private message. I thought I would answer it here in case other members have the same question. You asked how do stop receiving all but the digest entries regarding GCA Medications and Actemra? The Get Started on Connect guide contains all of the frequent tasks might want to do on Connect. There is a link to the guide at the bottom of every Connect page in the left footer column – Get Started on Connect (links to
https://connect.mayoclinic.org/get-started-on-connect/), Here is the topic in the guide that will give you the step by step instructions for setting your email notifications like you want them.
How to Set Notification Preferences — https://connect.mayoclinic.org/get-started-on-connect/#notification-preferences
You also asked about the need to re-post your response to the Actemra question on the Medications thread? I only see 1 post in your profile. If you click View & Reply at the bottom of the email notification for this post, it will take you to your post where I posted this message.
Another valuable source of information about GCA is this 12-page peer-reviewed article written by a group of doctors in Texas. It is well-documented.
I am starting on Actemra this week for Giant Cell Arteritis. I am also on 15 mg of Prednisone as I have PMR. Has anyone had experience with this biologic and can It Help PMR also
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Hi @marilyncarkner, You will notice that we merged your post back to the previous discussion you started – What's your experience with Actemra for GCA? so that it's all in one discussion and easier for members to follow.
Here are some references you might find helpful.
Vasculitis Foundation – FDA Approves Genentech’s Actemra® for Giant Cell Arteritis
Weekly Actemra improves health-related quality of life, fatigue in GCA
These articles and studies were very educational Thanks very much
I’ve been taking Actemra injections for 1 1/2 yrs. Feeling good and markers are normal but I’d like to discontinue the Actemra at some point. My Dr. has advised that I should continue this treatment indefinitely. Has anyone discontinued Actemra as a treatment for GCA and been in remission?
Welcome @pickle7, My only experience is with PMR. I'm wondering if @marilyncarkner, @paddington and @tsc may have some thoughts on continuing or discontinuing treatment with Actemra. I did find some information on the topic that may be worth discussing with your doctor if you want to discontinue the treatment and your GCA is under control.
Nearly Half of Giant Cell Arteritis Patients on Actemra for a Year Stay in Remission After Stopping It: https://creakyjoints.org/treatment/tocilizumab-actemra-giant-cell-arteritis-prolonged-remission/
Are you on any other treatment along with the Actemra and are your GCA symptoms gone?
Hi @pickle7, my only experience with a drug for GCA is prednisone and I've been on it for a year. I have no experience with Actemta. I wish you the best.
Yes, I was on prednisone many times for both GCA and PMR but now Actemra has been a relief- no side effects after being on it for 1 1/2 yrs. The prednisone, over the years, has done damage to my body so I’m relieved to be off of it. I just would like to be in remission and not have to use any more drugs. We’ll see…. Thanks for your encouragement.
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