@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
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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
5 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