@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing drugs?
I have been on Actemra for about 18 months (now injecting every 2 weeks), and have been avoiding indoor spaces in close proximity to people. So no planes, buses, crowded restaurants, indoor performances, etc. This has been quite limiting, and my rheumatologist says she wouldn't be quite as careful. She says the danger is much less than if I was taking Prednisone. But I'm still concerned that Actemra alone leaves me vulnerable to infection.
Were you on Actemra alone until May 2023, or still also taking Prednisone?
I wasn’t on prednisone but only actemra when I got sick. I was on prednisone from 2018 to 2022. Took Actemra infusions from 2022 to 2023. Caught the influenza A on the trip. Planes, buses, cruise ship, etc. But, had not been sick for 10 months on the actemra before that. Always was cautious. It did put me into remission where I have been since May 2023. No medication since then.
Best wishes for good health.
@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing drugs?
I have been on Actemra for about 18 months (now injecting every 2 weeks), and have been avoiding indoor spaces in close proximity to people. So no planes, buses, crowded restaurants, indoor performances, etc. This has been quite limiting, and my rheumatologist says she wouldn't be quite as careful. She says the danger is much less than if I was taking Prednisone. But I'm still concerned that Actemra alone leaves me vulnerable to infection.
Were you on Actemra alone until May 2023, or still also taking Prednisone?
My first Actemra dose was an injection on January 1st, 2019. I'm presently doing a monthly infusion. By comparison, I live on the wild side! Anyone who knows me would laugh if they read what I just wrote.
This past April to May, I was in Florida for a week. Then I completed a 2-week trans Atlantic cruise to Barcelona. After 5 days in Barcelona, we did another 10 day Mediterranean cruise to Athens. I don't know how many buses, trains, subways and planes I was on. I took in a show every night on the cruise and a couple of shows on land too.
I caught a cold (tested negative for Covid) while cruising. The cold was the only health problem that I encountered and I isolated myself for three days.
My not being able to get an Actemra infusion for 7 weeks was a bit of a stretch. I was feeling some familiar aches and pains. My inflammation markers were elevated prior to my Actemra infusion after getting home. I saw my rheumatologist who commented that an Actemra infusion every 4 weeks will be continued indefinitely.
I am making up for all of my lost years ... I guess! We are planning a trans Pacific cruise to Australia next year.
I was on ACTEMRA for 2 years with no side effects . It seemed to help along with my Pred. In Canada they would no longer renew it after a certain period. Does anyone know if Kevzara is approved in Canada My rheumatologist thinks it is not available.
I am currently on Mycophenolate 360 x 1 but it is not stopping progression of Scleroderma. Saw Pulmonologist in November who expressed concern about lung fibrosis expanding. My Vital Force Capacity measure is decreasing and he indicated that if I don’t try something else in addition to Mycophenolate, I will be on oxygen. He said Rheumatologist needs to be more proactive. They talked and now—after much back and forth with insurance company—I will be using Acemtra injections. My RBC is 3.74, Hemoglobin 11.0 (low) and Sed Rate 77 (high). Total protein 9.0 (high). In the interim a Sputum test showed a lung infection so will see infectious disease doctor on 1/10/25. If he diagnoses a more serious infection (had before and was on awful antibiotics(Doxycycline Hyclate and Ciproflaxin) that made me quite ill and caused swelling/tenderness in one leg) then I cannot take Actemra. Would be interested in hearing feedback from those who’ve experienced similar issue. Thank you.
Planning on visiting a Doctor of Medicine and Head of Rheumatology in Washington, DC in February. My concern is
@dbyrne, I'm also tagging you in this discussion as well to read many members' experiences on Actemra. @gretchie, @lmoross, @pickle7 all have tried Actemra and may wish to share their experiences with you.
@JustinMcClanahan
Hello - it's been 2 years since the last response so not sure this thread is active. Briefly, was luckily got a quick diagnosis for GCA via temporal artery biopsy. Was put on 60 mg Prednisone while the prior authorization for Actemra (really Tyenne) was processed. I didn't start the Prednisone titration until 2 monthly infusions. I did a 3 month tritration for Prednisone, at 1.5 mg now so almost done. My Rheumatologist wants me to be on the infusions for at least 12 months and then will consider stopping. My heart goes out to all of you who have had to take long courses of Prednisone. I found the side effects were awful. I have not had any side effects with Actemra but of course my immune system is suppressed. Luckily my I can easily socialize outside.
@JustinMcClanahan
Hello - it's been 2 years since the last response so not sure this thread is active. Briefly, was luckily got a quick diagnosis for GCA via temporal artery biopsy. Was put on 60 mg Prednisone while the prior authorization for Actemra (really Tyenne) was processed. I didn't start the Prednisone titration until 2 monthly infusions. I did a 3 month tritration for Prednisone, at 1.5 mg now so almost done. My Rheumatologist wants me to be on the infusions for at least 12 months and then will consider stopping. My heart goes out to all of you who have had to take long courses of Prednisone. I found the side effects were awful. I have not had any side effects with Actemra but of course my immune system is suppressed. Luckily my I can easily socialize outside.
@gcasusan
It seems like you are having a good response to Tyenne. Tapering from a Prednisone dose of 60 mg to 1.5 mg is amazing! I hope you don't have a flare. I haven't had any flares while on Actemra. My symptoms somewhat return and my inflammation markers gradually trend higher when I go too long between Actemra infusions. My rheumatologist has no plan to stop Actemra.
I like it when someone posts something on an old thread. I contributed my two cents worth about a year ago. I'm actually in Sydney, Australia at the moment after doing our TransPacific cruise to Sydney from Honolulu. If there are any Aussies reading this --- I love your country!!!
I'm still doing monthly Actemra infusions. My last infusion was 5 weeks ago right before we left home. I'm beginning to wonder if I still need Actemra. My Actemra infusion dose was increased a bit just for this trip because my rheumatologist was aware that it would be close to 6 weeks between infusions.
We will get home next week. It looks like I will survive this trip even though I'm immunosuppressed. Amazingly ... no health problems at all so far on this trip!
Your comments are giving me hope that I will eventually be able to travel within the monthly Actemra infusions.
It sounds like you can wait longer between infusions.
I have had three Actemra infusions. I have dropped to 7 1/2 mg of Prednisone.
My rheumatologist has me drop down every two weeks.
As a Highly Sensitive Person (HSP), I can feel the internal swelling, and what I call the "marauder"- actually my own body attacking itself (IL-6, I guess).
My excellent doctor realized something was a miss and ordered a CT Scan with Contrast for head and neck. I have a congenital defect on the left side with some underdeveloped parts - fortunately no stenosis BUT a narrowed artery and part of brain- so slower blood circulation. I just got results and he hasn't given me his diagnosis, so to speak...
Thank you for sharing your experiences. I had a severe case of PMR. After that year and half and feeling excited to be healthy, I was grief-stricken to learn I have GCA. My friend labels these as my "alphabet disease..."
I definitely "enjoy" each day knowing I will get better with the biologic.
Helene
Your comments are giving me hope that I will eventually be able to travel within the monthly Actemra infusions.
It sounds like you can wait longer between infusions.
I have had three Actemra infusions. I have dropped to 7 1/2 mg of Prednisone.
My rheumatologist has me drop down every two weeks.
As a Highly Sensitive Person (HSP), I can feel the internal swelling, and what I call the "marauder"- actually my own body attacking itself (IL-6, I guess).
My excellent doctor realized something was a miss and ordered a CT Scan with Contrast for head and neck. I have a congenital defect on the left side with some underdeveloped parts - fortunately no stenosis BUT a narrowed artery and part of brain- so slower blood circulation. I just got results and he hasn't given me his diagnosis, so to speak...
Thank you for sharing your experiences. I had a severe case of PMR. After that year and half and feeling excited to be healthy, I was grief-stricken to learn I have GCA. My friend labels these as my "alphabet disease..."
I definitely "enjoy" each day knowing I will get better with the biologic.
Helene
I'm somewhat sensitive to pain as well. It is easier to deal with pain when you know why it happens. I have trigeminal neuralgia which caused facial electricity that felt like electrocution. Trigeminal neuralgia was called the "suicide disease" when they didn't know the cause or how to treat it. https://pmc.ncbi.nlm.nih.gov/articles/PMC12438733/
---------------------
My trigeminal neuralgia was a congenital defect at the base of my brain. A neurosurgeon stopped the electricity but I still have facial "discomfort" https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
-------------------
I won't go into details because I cry when I think about it. When I asked the neurosurgeon why it happened he referred me to God. Fortunately my pain was reduced substantially.
--------------------------
I also have severe spinal stenosis in the lumbar area of my spine. A neurologist says the pain signals throughout my body are "scrambled" so my brain doesn't know how to interpret the pain signals. In my case ... I can't listen to my body.
The pain is real but my brain doesn't interpret the pain correctly. When a small breeze or simple touch on my face generates mega jolts of electricity there is a major malfunction. The body can radiate pain to places where no problem exists. It depends on how our bodies are wired with nerves and how the signals get transmitted to the brain.
I've been on Actemra infusions since Jan 2025. It was prescribed because I had a flare at 8 mg. when I was reducing my Prednisone. Started at 60 mg. day in July 2024, for suspected GCA and PMR. Before I got GCA/PMR, I never had so much as a cold. I got a bad cold last December, when I had my flare. In July 2025, I got Covid (for the first time). I went to Iceland in mid-October and came back with a respiratory infection. I was on a small tour bus and always wore an N95 mask, except when I was eating. I think about 5 people on the bus were getting sick towards the end of the 8 day tour. I also wore it on the flights. So much for trying to protect myself. I'm still hacking, but it's better.
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I wasn’t on prednisone but only actemra when I got sick. I was on prednisone from 2018 to 2022. Took Actemra infusions from 2022 to 2023. Caught the influenza A on the trip. Planes, buses, cruise ship, etc. But, had not been sick for 10 months on the actemra before that. Always was cautious. It did put me into remission where I have been since May 2023. No medication since then.
Best wishes for good health.
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Helpful -
Hug
2 ReactionsMy first Actemra dose was an injection on January 1st, 2019. I'm presently doing a monthly infusion. By comparison, I live on the wild side! Anyone who knows me would laugh if they read what I just wrote.
This past April to May, I was in Florida for a week. Then I completed a 2-week trans Atlantic cruise to Barcelona. After 5 days in Barcelona, we did another 10 day Mediterranean cruise to Athens. I don't know how many buses, trains, subways and planes I was on. I took in a show every night on the cruise and a couple of shows on land too.
I caught a cold (tested negative for Covid) while cruising. The cold was the only health problem that I encountered and I isolated myself for three days.
My not being able to get an Actemra infusion for 7 weeks was a bit of a stretch. I was feeling some familiar aches and pains. My inflammation markers were elevated prior to my Actemra infusion after getting home. I saw my rheumatologist who commented that an Actemra infusion every 4 weeks will be continued indefinitely.
I am making up for all of my lost years ... I guess! We are planning a trans Pacific cruise to Australia next year.
-
Like -
Helpful -
Hug
6 ReactionsI was on ACTEMRA for 2 years with no side effects . It seemed to help along with my Pred. In Canada they would no longer renew it after a certain period. Does anyone know if Kevzara is approved in Canada My rheumatologist thinks it is not available.
-
Like -
Helpful -
Hug
1 ReactionI am currently on Mycophenolate 360 x 1 but it is not stopping progression of Scleroderma. Saw Pulmonologist in November who expressed concern about lung fibrosis expanding. My Vital Force Capacity measure is decreasing and he indicated that if I don’t try something else in addition to Mycophenolate, I will be on oxygen. He said Rheumatologist needs to be more proactive. They talked and now—after much back and forth with insurance company—I will be using Acemtra injections. My RBC is 3.74, Hemoglobin 11.0 (low) and Sed Rate 77 (high). Total protein 9.0 (high). In the interim a Sputum test showed a lung infection so will see infectious disease doctor on 1/10/25. If he diagnoses a more serious infection (had before and was on awful antibiotics(Doxycycline Hyclate and Ciproflaxin) that made me quite ill and caused swelling/tenderness in one leg) then I cannot take Actemra. Would be interested in hearing feedback from those who’ve experienced similar issue. Thank you.
Planning on visiting a Doctor of Medicine and Head of Rheumatology in Washington, DC in February. My concern is
-
Like -
Helpful -
Hug
1 Reaction@JustinMcClanahan
Hello - it's been 2 years since the last response so not sure this thread is active. Briefly, was luckily got a quick diagnosis for GCA via temporal artery biopsy. Was put on 60 mg Prednisone while the prior authorization for Actemra (really Tyenne) was processed. I didn't start the Prednisone titration until 2 monthly infusions. I did a 3 month tritration for Prednisone, at 1.5 mg now so almost done. My Rheumatologist wants me to be on the infusions for at least 12 months and then will consider stopping. My heart goes out to all of you who have had to take long courses of Prednisone. I found the side effects were awful. I have not had any side effects with Actemra but of course my immune system is suppressed. Luckily my I can easily socialize outside.
@gcasusan
It seems like you are having a good response to Tyenne. Tapering from a Prednisone dose of 60 mg to 1.5 mg is amazing! I hope you don't have a flare. I haven't had any flares while on Actemra. My symptoms somewhat return and my inflammation markers gradually trend higher when I go too long between Actemra infusions. My rheumatologist has no plan to stop Actemra.
I like it when someone posts something on an old thread. I contributed my two cents worth about a year ago. I'm actually in Sydney, Australia at the moment after doing our TransPacific cruise to Sydney from Honolulu. If there are any Aussies reading this --- I love your country!!!
I'm still doing monthly Actemra infusions. My last infusion was 5 weeks ago right before we left home. I'm beginning to wonder if I still need Actemra. My Actemra infusion dose was increased a bit just for this trip because my rheumatologist was aware that it would be close to 6 weeks between infusions.
We will get home next week. It looks like I will survive this trip even though I'm immunosuppressed. Amazingly ... no health problems at all so far on this trip!
-
Like -
Helpful -
Hug
2 ReactionsYour comments are giving me hope that I will eventually be able to travel within the monthly Actemra infusions.
It sounds like you can wait longer between infusions.
I have had three Actemra infusions. I have dropped to 7 1/2 mg of Prednisone.
My rheumatologist has me drop down every two weeks.
As a Highly Sensitive Person (HSP), I can feel the internal swelling, and what I call the "marauder"- actually my own body attacking itself (IL-6, I guess).
My excellent doctor realized something was a miss and ordered a CT Scan with Contrast for head and neck. I have a congenital defect on the left side with some underdeveloped parts - fortunately no stenosis BUT a narrowed artery and part of brain- so slower blood circulation. I just got results and he hasn't given me his diagnosis, so to speak...
Thank you for sharing your experiences. I had a severe case of PMR. After that year and half and feeling excited to be healthy, I was grief-stricken to learn I have GCA. My friend labels these as my "alphabet disease..."
I definitely "enjoy" each day knowing I will get better with the biologic.
Helene
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Like -
Helpful -
Hug
4 Reactions@kathren
I'm somewhat sensitive to pain as well. It is easier to deal with pain when you know why it happens. I have trigeminal neuralgia which caused facial electricity that felt like electrocution. Trigeminal neuralgia was called the "suicide disease" when they didn't know the cause or how to treat it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12438733/
---------------------
My trigeminal neuralgia was a congenital defect at the base of my brain. A neurosurgeon stopped the electricity but I still have facial "discomfort"
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
-------------------
I won't go into details because I cry when I think about it. When I asked the neurosurgeon why it happened he referred me to God. Fortunately my pain was reduced substantially.
--------------------------
I also have severe spinal stenosis in the lumbar area of my spine. A neurologist says the pain signals throughout my body are "scrambled" so my brain doesn't know how to interpret the pain signals. In my case ... I can't listen to my body.
The pain is real but my brain doesn't interpret the pain correctly. When a small breeze or simple touch on my face generates mega jolts of electricity there is a major malfunction. The body can radiate pain to places where no problem exists. It depends on how our bodies are wired with nerves and how the signals get transmitted to the brain.
-
Like -
Helpful -
Hug
3 ReactionsI've been on Actemra infusions since Jan 2025. It was prescribed because I had a flare at 8 mg. when I was reducing my Prednisone. Started at 60 mg. day in July 2024, for suspected GCA and PMR. Before I got GCA/PMR, I never had so much as a cold. I got a bad cold last December, when I had my flare. In July 2025, I got Covid (for the first time). I went to Iceland in mid-October and came back with a respiratory infection. I was on a small tour bus and always wore an N95 mask, except when I was eating. I think about 5 people on the bus were getting sick towards the end of the 8 day tour. I also wore it on the flights. So much for trying to protect myself. I'm still hacking, but it's better.
-
Like -
Helpful -
Hug
2 Reactions