Kevzara

Hi @neztrop, I am so sorry to hear that you have had problems with tapering, but that you have started on Kevzara. I also had difficulty with tapering and am on Actemra due to suspected GCA. I have been taking weekly injections since mid December and I am starting to really feel the difference despite a two week period with no medication due to a pharmacy shipment issue. My doctor recommended that I hold tapering until the medication started to work and that I also delay when my shipment was missing. I think that was wise advice since tapering is counter productive when you are in active disease.

I definitely think you should mask, when in close contact with patients, when flu and Covid are active in your community. I ended up retiring earlier than anticipated (age 63) due to PMR pain. My daily waking pain was significant so I basically started over every morning. I have learned that stress also has an impact on the severity of the PMR symptoms so you must factor that in too. My husband strongly encouraged me to retire and we were in a financial position for me to make that leap earlier than anticipated. With the hiccups that I have had with tapering, I am grateful to have done that. I am praying that your answers are crystal clear and that you remain healthy to fully recover from PMR. Let us know what you decide and how you are progressing. Blessings! ❤️

Thanks so much for sharing your experience. I’m also 63 and am down to PT work, wondering how long/if my PMR will make that too difficult. I’m not 100% able to stop working so it’s a push to keep going some days. I will be masking at work and around the community. Hope all is going well with you. Thanks again

Hi @ neztrop, You will definitely have my prayers! I waited 2.5 years on Prednisone before I decided to try a biologic. In retrospect, I think that was a mistake. Prednisone was doing some serious damage to my body while I tried modifying my diet, eliminating sugar and alcohol and adding herbal remedies. Those things all helped marginally but did not let me reduce my Prednisone below 15 mg without a significant flare. Your decision to start Kevzara earlier in the process could be a magic bullet. Prayers for much relief and success! We’d love to hear your ongoing story.

"Prednisone was doing some serious damage to my body while I tried modifying my diet, eliminating sugar and alcohol and adding herbal remedies. Those things all helped marginally but did not let me reduce my Prednisone below 15 mg without a significant flare."
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I couldn't agree more. I was still on 10 mg of Prednisone more than 12 years after being diagnosed with PMR. I nearly conceded that I would take Prednisone for the rest of my life. There was a recommendation that I shouldn't try a biologic when Actemra was offered to me. The recommendation stated that prednisone was better because it was "the devil I knew" compared to Actemra being "the devil I didn't know." I thought that was stupid recommendation since the same people had never tried a biologic.

I mentioned the recommendation against Actemra to my rheumatologist who said, "I wouldn't know if Actemra was a devil if I didn't try it to see." He made a good point so I tried Actemra. In retrospect, Actemra was a game changer for me. I have been off Prednisone for 5 years and couldn't be more pleased. When I got off Prednisone and I was able to compare my "quality of life" relative to taking prednisone for the rest of my life---Actemra wasn't the devil it was purported to be. When I reported back to the same people who were against Actemra, they said my experience with Actemra wasn't pertinent to them.

I'm not advocating that everyone should try a biologic. Prednisone should work for many people. However, there comes a time when something new should be tried. In any case, it is a personal choice after consulting with your doctor who would have to agree.

Hi, I was just diagnosed with PMR about two weeks ago. I’ve just started on a low-dose regimen of prednisone, 10 mg daily. After reading some of the posts on this site, I am wondering if I should be considering a biologic I’ve had some lessening of pain on the prednisone already, but I am very fearful of the long-term side effects given what I’ve read in general and what I’ve seen on this group site. Any comments or insights would be most welcome. I feel very frightened having just been given this diagnosis.

Hi, I was just diagnosed with PMR about two weeks ago. I’ve just started on a low-dose regimen of prednisone, 10 mg daily. After reading some of the posts on this site, I am wondering if I should be considering a biologic I’ve had some lessening of pain on the prednisone already, but I am very fearful of the long-term side effects given what I’ve read in general and what I’ve seen on this group site. Any comments or insights would be most welcome. I feel very frightened having just been given this diagnosis.

I don't know the answer. I do wish that a biologic was tried much sooner in my case. I was treated with prednisone for 12 years before a biologic was tried. I can only say my treatment with Prednisone in the short term didn't cause too many problems. My long term use and cumulative dose of prednisone over time was what did most of the damage.

By comparison, I wasn't able to taper down to 10 mg of Prednisone during my first 10 years of treatment. I was in the 20-40 mg range during most of that time. A biologic was tried when I couldn't tolerate anything less than 10 mg after 12 years.

I don't think you need to worry too much about 10 mg or less for the first year or two. It just depends on how things progress. Don't be frightened of prednisone and PMR. Just be aware of potential problems that can arise the longer you need prednisone. A biologic comes with potential problems too.

I think its great that you concerned about long term use. Most are just glad to be feeling alive again after starting prednisone. Usually our diagnosis took some time to figure out and feeling better on prednisone is a blessing. I was on 10mg equiv. for 5 months. Then started to taper. I was off prednisone in 6 months. My PMR was controlled and I did not have any other ailments that popped up. dadcue is a miracle. He was faced with so many demons to fight that he became a demon slayer. I agree with his advice. If you can treat PMR and prednisone as in a relatively short amount of time say less than 2 years then you can save yourself from additional medications. They all have some effect. Nothing like prednisone. Prednisone side effects may last a lifetime. (statiscally speaking). Educate yourself as much as possible and realize you can control the outcome.

I think its great that you concerned about long term use. Most are just glad to be feeling alive again after starting prednisone. Usually our diagnosis took some time to figure out and feeling better on prednisone is a blessing. I was on 10mg equiv. for 5 months. Then started to taper. I was off prednisone in 6 months. My PMR was controlled and I did not have any other ailments that popped up. dadcue is a miracle. He was faced with so many demons to fight that he became a demon slayer. I agree with his advice. If you can treat PMR and prednisone as in a relatively short amount of time say less than 2 years then you can save yourself from additional medications. They all have some effect. Nothing like prednisone. Prednisone side effects may last a lifetime. (statiscally speaking). Educate yourself as much as possible and realize you can control the outcome.

I don't know the answer. I do wish that a biologic was tried much sooner in my case. I was treated with prednisone for 12 years before a biologic was tried. I can only say my treatment with Prednisone in the short term didn't cause too many problems. My long term use and cumulative dose of prednisone over time was what did most of the damage.

By comparison, I wasn't able to taper down to 10 mg of Prednisone during my first 10 years of treatment. I was in the 20-40 mg range during most of that time. A biologic was tried when I couldn't tolerate anything less than 10 mg after 12 years.

I don't think you need to worry too much about 10 mg or less for the first year or two. It just depends on how things progress. Don't be frightened of prednisone and PMR. Just be aware of potential problems that can arise the longer you need prednisone. A biologic comes with potential problems too.