I was diagnosed with PMR and GCA in late June 2024. I have had a good experience with Actemra. I've been taking weekly injections for 7 months. I haven't had any side effects, and it has allowed me to taper the prednisone from 60 mg per day down to 7 with no problems. Other than that I just see my rheumatologist and ophthalmologist regularly to monitor for problems from the GCA and prednisone.
I don't know how you are feeling right now, but the first couple of months after my diagnosis I felt really bad. I was on 60 mg of prednisone for 6 weeks, and that caused insomnia and other problems. I could only sleep 5 hours a night. Plus I had lost weight and strength from the PMR and GCA, so I was tired and groggy during the day. I started feeling a lot better as I tapered prednisone. The insomnia stopped once I got down to about 40 mg per day, and I've felt good since then.
I was diagnosed with PMR and likely GCA in late July 2024. I was on 60 mg. of prednisone for about 6 weeks and then started tapering. I still had headaches but they weren't the same as the GCA headaches. I tapered to 8 mg. in early December and had a flare right after Christmas. My GCA headaches returned. I asked my rheumatologist PA if she would prescribe Actemra infusions. I get infusions every 4 weeks. I just had my second one 2 weeks ago. I started feeling a lot better two weeks after the first infusion. Much more energy. My headaches went away pretty quickly. I still wake up with some minor joint aches, but they pass as soon as I get moving. Right now, I'm on 10 mg. of pred.
I can only say that Actemra enabled me to successfully discontinue Prednisone after being treated with Prednisone for 12 years. I now do a monthly Actemra infusion with no discernible side effects.
I never want to go back to Prednisone ... simple as that. I will gladly remain on Actemra for as long as it continues to work.
How I feel currently is much better compared with when I was on Prednisone. Maybe the first year or two of Prednisone wasn't that bad. It was all a downward decline in my quality of life after that. Now my quality of life is improving.
I was diagnosed with PMR and GCA in late June 2024. I have had a good experience with Actemra. I've been taking weekly injections for 7 months. I haven't had any side effects, and it has allowed me to taper the prednisone from 60 mg per day down to 7 with no problems. Other than that I just see my rheumatologist and ophthalmologist regularly to monitor for problems from the GCA and prednisone.
I don't know how you are feeling right now, but the first couple of months after my diagnosis I felt really bad. I was on 60 mg of prednisone for 6 weeks, and that caused insomnia and other problems. I could only sleep 5 hours a night. Plus I had lost weight and strength from the PMR and GCA, so I was tired and groggy during the day. I started feeling a lot better as I tapered prednisone. The insomnia stopped once I got down to about 40 mg per day, and I've felt good since then.
I can only say that Actemra enabled me to successfully discontinue Prednisone after being treated with Prednisone for 12 years. I now do a monthly Actemra infusion with no discernible side effects.
I never want to go back to Prednisone ... simple as that. I will gladly remain on Actemra for as long as it continues to work.
How I feel currently is much better compared with when I was on Prednisone. Maybe the first year or two of Prednisone wasn't that bad. It was all a downward decline in my quality of life after that. Now my quality of life is improving.
I hope you feel better soon. It's really good that you're starting Actemra so soon after your diagnosis. In my case I had to wait about 2 months before starting it.
My experience with Actemra has been very positive.
I've been on Actemra since April 2024 due to a GCA diagnosis; the disease left me severely inflamed, to the point of double vision and severe pain throughout the body (felt like multiple broken bones) with night sweats, severe nausea and loss of weight, fever,...
I started weekly self-injections of Actemra while still on 60 mg/day of prednisone, tapering off the prednisone over a period of 6 months.
Actemra has been very successful, with no noticeable side effects; a lifesaver. Getting off the prednisone and transitioning to Actemra helped tremendously, since prednisone definitely did have multiple severe side effects - most prominently limiting my sleep to 3-4 hours per night. All of that went away with Actemra. At this point, I am down to an injection per month of Actemra and hope to be completely off in a few months.
I was 64 when first diagnosed, very active and in excellent shape with regular cardio and strength training, and extensive outdoor activities. I am getting close to that level of health and activity again.
My experience with Actemra has been very positive.
I've been on Actemra since April 2024 due to a GCA diagnosis; the disease left me severely inflamed, to the point of double vision and severe pain throughout the body (felt like multiple broken bones) with night sweats, severe nausea and loss of weight, fever,...
I started weekly self-injections of Actemra while still on 60 mg/day of prednisone, tapering off the prednisone over a period of 6 months.
Actemra has been very successful, with no noticeable side effects; a lifesaver. Getting off the prednisone and transitioning to Actemra helped tremendously, since prednisone definitely did have multiple severe side effects - most prominently limiting my sleep to 3-4 hours per night. All of that went away with Actemra. At this point, I am down to an injection per month of Actemra and hope to be completely off in a few months.
I was 64 when first diagnosed, very active and in excellent shape with regular cardio and strength training, and extensive outdoor activities. I am getting close to that level of health and activity again.
Thanks for the update! I'm glad you continue to do well on Actemra.
After 6 years on Actemra, I still have no clue if it will ever be stopped. I don't seem to have any adverse effects from Actemra so my rheumatologist doesn't see any need to stop it. When the time between my Actemra infusions were stretched to 7 weeks... my inflammation markers increase along with an uptick of pain but nothing severe.
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I was diagnosed with PMR and GCA in late June 2024. I have had a good experience with Actemra. I've been taking weekly injections for 7 months. I haven't had any side effects, and it has allowed me to taper the prednisone from 60 mg per day down to 7 with no problems. Other than that I just see my rheumatologist and ophthalmologist regularly to monitor for problems from the GCA and prednisone.
I don't know how you are feeling right now, but the first couple of months after my diagnosis I felt really bad. I was on 60 mg of prednisone for 6 weeks, and that caused insomnia and other problems. I could only sleep 5 hours a night. Plus I had lost weight and strength from the PMR and GCA, so I was tired and groggy during the day. I started feeling a lot better as I tapered prednisone. The insomnia stopped once I got down to about 40 mg per day, and I've felt good since then.
I was diagnosed with PMR and likely GCA in late July 2024. I was on 60 mg. of prednisone for about 6 weeks and then started tapering. I still had headaches but they weren't the same as the GCA headaches. I tapered to 8 mg. in early December and had a flare right after Christmas. My GCA headaches returned. I asked my rheumatologist PA if she would prescribe Actemra infusions. I get infusions every 4 weeks. I just had my second one 2 weeks ago. I started feeling a lot better two weeks after the first infusion. Much more energy. My headaches went away pretty quickly. I still wake up with some minor joint aches, but they pass as soon as I get moving. Right now, I'm on 10 mg. of pred.
I can only say that Actemra enabled me to successfully discontinue Prednisone after being treated with Prednisone for 12 years. I now do a monthly Actemra infusion with no discernible side effects.
I never want to go back to Prednisone ... simple as that. I will gladly remain on Actemra for as long as it continues to work.
How I feel currently is much better compared with when I was on Prednisone. Maybe the first year or two of Prednisone wasn't that bad. It was all a downward decline in my quality of life after that. Now my quality of life is improving.
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2 ReactionsThank you so much for your response. I’m still in hospital waiting on TB test before 1st injection of Actrema. Hopeful after reading your message. 🙏
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3 ReactionsThank you. You have any GCA eye issues?
No GCA eye issues but plenty of other eye problems. Actemra was used to treat refractory PMR and possible subclinical GCA.
I have another autoimmune disorder called uveitis which can also cause vision loss. With over 30 flares of uveitis, I'm very familiar with taking 60-100 mg of Prednisone to control those flares.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My other eye problems are mostly Prednisone side effects.
https://www.healthline.com/health/steroids-and-vision#risk-factors
I hope you feel better soon. It's really good that you're starting Actemra so soon after your diagnosis. In my case I had to wait about 2 months before starting it.
My experience with Actemra has been very positive.
I've been on Actemra since April 2024 due to a GCA diagnosis; the disease left me severely inflamed, to the point of double vision and severe pain throughout the body (felt like multiple broken bones) with night sweats, severe nausea and loss of weight, fever,...
I started weekly self-injections of Actemra while still on 60 mg/day of prednisone, tapering off the prednisone over a period of 6 months.
Actemra has been very successful, with no noticeable side effects; a lifesaver. Getting off the prednisone and transitioning to Actemra helped tremendously, since prednisone definitely did have multiple severe side effects - most prominently limiting my sleep to 3-4 hours per night. All of that went away with Actemra. At this point, I am down to an injection per month of Actemra and hope to be completely off in a few months.
I was 64 when first diagnosed, very active and in excellent shape with regular cardio and strength training, and extensive outdoor activities. I am getting close to that level of health and activity again.
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3 ReactionsThanks for the update! I'm glad you continue to do well on Actemra.
After 6 years on Actemra, I still have no clue if it will ever be stopped. I don't seem to have any adverse effects from Actemra so my rheumatologist doesn't see any need to stop it. When the time between my Actemra infusions were stretched to 7 weeks... my inflammation markers increase along with an uptick of pain but nothing severe.
@jmdoherty, you may also be interested in these related discussions:
- Just Started Actemra: https://connect.mayoclinic.org/discussion/just-started-actemra/
- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/
- Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
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