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Actemra and interstitial lung disease and RA

Posted by ktgirl @ktgirl, Mar 11, 2023

I've just started Actemra a week ago with self injections. I had a TKR 6 weeks ago and had a problem with my lungs about 3 weeks ago. My heart was racing and very short of breath. I went to the ER and they didn't find any blood clots but found inflammation in the lungs (pneumonitis). My rheumatologist put me on a prednisone taper and that has helped somewhat. Has anyone had experience with actemra for this? I also looked up the drug and the pharmacy it is sent from. The pharmacy had bad reviews. I'm on Medicare and have been approved for the free cost of the drug. Thank goodness! I'd appreciate hearing from anyone with experience using this drug.

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moldy | @moldy | Mar 12, 2023

I have been on Actemra for over a year for Giant Cell Arterites (sp?). It is an amazing drug. Before it, I couldn't walk to the mail box. Dr. put me on Prednisone for 6 months prior to starting the Actemra. It took over where the Prednisone left off and eliminated all of the prednisone side effects. I also have minor thrombocytopenia (bleeding disorder) and haven't seen any problems using the two drugs. I also take baby aspirin, cholesterol, and blood pressure meds so Actemra could react badly with them--but it hasn't seemed to for over a year. However, I am now starting to get a reaction, minor swelling at the injection site and sometimes itchy hives a couple days after injection. A Zyrtec seems to keep this under control. Dr prescribed one Zyrtec the day before, the day of, and the day after the injection. I seem to be able to use less taking it when I need it. The Actemra has reduced my deep artery swelling to minimal and, depending on the next MRI results it is expected I might be able to reduce my weekly shot to bi weekly and then none at all. I am 80 yrs old. Of Swedish and German/Dutch descent.

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1 reply
ktgirl | @ktgirl | Mar 12, 2023
In reply to @moldy "I have been on Actemra for over a year for Giant Cell Arterites (sp?). It is..." + (show)
@moldy

I have been on Actemra for over a year for Giant Cell Arterites (sp?). It is an amazing drug. Before it, I couldn't walk to the mail box. Dr. put me on Prednisone for 6 months prior to starting the Actemra. It took over where the Prednisone left off and eliminated all of the prednisone side effects. I also have minor thrombocytopenia (bleeding disorder) and haven't seen any problems using the two drugs. I also take baby aspirin, cholesterol, and blood pressure meds so Actemra could react badly with them--but it hasn't seemed to for over a year. However, I am now starting to get a reaction, minor swelling at the injection site and sometimes itchy hives a couple days after injection. A Zyrtec seems to keep this under control. Dr prescribed one Zyrtec the day before, the day of, and the day after the injection. I seem to be able to use less taking it when I need it. The Actemra has reduced my deep artery swelling to minimal and, depending on the next MRI results it is expected I might be able to reduce my weekly shot to bi weekly and then none at all. I am 80 yrs old. Of Swedish and German/Dutch descent.

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Thanks for the response. It's good to hear good news about these meds. I searched through comments here about Actemra but haven't found any regarding lung disease. I think just recently it's been discovered to help with interstitial lung disease so maybe I'm the first to use it for that. I'm hoping for the best.
Carol

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1 reply
moldy | @moldy | Mar 12, 2023

Hang in there. Actemra was proven to be such a good drug that was pushed through the approval process (FDA or whatever has the say on such things) in 6 months instead of a much longer period usually associated with approval.

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Linda Moross | @lmoross | Mar 12, 2023
In reply to @ktgirl "Thanks for the response. It's good to hear good news about these meds. I searched through..." + (show)
@ktgirl

Thanks for the response. It's good to hear good news about these meds. I searched through comments here about Actemra but haven't found any regarding lung disease. I think just recently it's been discovered to help with interstitial lung disease so maybe I'm the first to use it for that. I'm hoping for the best.
Carol

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I am on Actemra with wonderful results for Polymyalgia Rheumatica. No side effects. I have read it has been used for lung inflammation with Covid with good results. Best wishes!

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1 reply
ktgirl | @ktgirl | Mar 12, 2023
In reply to @lmoross "I am on Actemra with wonderful results for Polymyalgia Rheumatica. No side effects. I have read..." + (show)
@lmoross

I am on Actemra with wonderful results for Polymyalgia Rheumatica. No side effects. I have read it has been used for lung inflammation with Covid with good results. Best wishes!

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Thanks so much. I'm still having trouble breathing and will see a pulmonologist at Mayo March 28th. I've only taken one shot of Actemra so far. I take a second shot one week from now. Hoping and praying for some relief!

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Linda Moross | @lmoross | Mar 12, 2023

I get IV infusions of Actemra once a month. It took three months before it began to work to relieve my pain and inflammation. My doctor told me to expect that long. I hope it is faster for you.

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1 reply
moldy | @moldy | Mar 13, 2023
In reply to @lmoross "I get IV infusions of Actemra once a month. It took three months before it began..." + (show)
@lmoross

I get IV infusions of Actemra once a month. It took three months before it began to work to relieve my pain and inflammation. My doctor told me to expect that long. I hope it is faster for you.

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As long as it WILL work eventually. That's the "light at the end of the tunnel" which makes the discomfort bearable.

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