GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Wow. My father has PMR (and may or may not have had GCA) and is very sensitive to medications. He's currently been holding at 7.5 mg prednisone for the last 6 weeks due to a possible flare. For any of you taking Actemra, did you have noticeable side effects or discomfort that might have been related to it?

I want to thank all of you for sharing your experiences and hope each of you is feeling some relief. I found Mayo Clinic Connect because I became a Mayo patient, but haven't been using it regularly; I have chronic pain, an autoinflammatory arthritis, and other related conditions. However, my dad developed PMR suddenly, a little over a year ago. It took weeks to diagnose, even after we suspected PMR, because his primary care provider did not know what to make of his sky-high ESR and elevated CRP. Even after my family asked him to look specifically into PMR, his team was extremely reluctant to begin a trial dose of prednisone or consult with a rheumatologist, let alone connect us with one. Eventually, he must have done the research and conceded. We got lucky and found a rheumatologist recommended by a friend who had an appointment opening within a week. But a few weeks later, my dad had a severe stroke (a known and severe complication of GCA, as most of you probably know). The neurologists told us it could not have been related to undiagnosed GCA, but I feel we'll never know (his care team was not very concerned at all about managing his PMR and finding a way to continue prednisone/IV steroids, even after he was stabilized) because they never assessed for it and he was on prednisone for weeks before the stroke and eventually while he was hospitalized.

I won't lie; it's been a hard road. It's been almost a year since the stroke, and we are not where we hoped to be with recovery. And at the same time, we're dealing with managing PMR flares, including one he had while hospitalized because they weren't monitoring his ESR, as we recommended and requested, until we could get a rheumatologist on board to help.

Last week, I thought to search here to see if there was a thread about PMR/GCA, and here I am. I'm writing to say I'm grateful for all of you sharing your stories. My dad also requires a very slow taper; from 30 mg, he's been reducing by 2.5 mg because going down by 5 mg, even at a higher dose was too much. I was dimly aware of the impact on adrenal function from long-term prednisone use, but I didn't realize it could take so long to get off prednisone, that adrenal insufficiency may be more common (at least judging from this thread), or that there was an alternative medication. We see his rheumatologist next week, and I'm going to ask about Actemra.

Wow. My father has PMR (and may or may not have had GCA) and is very sensitive to medications. He's currently been holding at 7.5 mg prednisone for the last 6 weeks due to a possible flare. For any of you taking Actemra, did you have noticeable side effects or discomfort that might have been related to it?

I want to thank all of you for sharing your experiences and hope each of you is feeling some relief. I found Mayo Clinic Connect because I became a Mayo patient, but haven't been using it regularly; I have chronic pain, an autoinflammatory arthritis, and other related conditions. However, my dad developed PMR suddenly, a little over a year ago. It took weeks to diagnose, even after we suspected PMR, because his primary care provider did not know what to make of his sky-high ESR and elevated CRP. Even after my family asked him to look specifically into PMR, his team was extremely reluctant to begin a trial dose of prednisone or consult with a rheumatologist, let alone connect us with one. Eventually, he must have done the research and conceded. We got lucky and found a rheumatologist recommended by a friend who had an appointment opening within a week. But a few weeks later, my dad had a severe stroke (a known and severe complication of GCA, as most of you probably know). The neurologists told us it could not have been related to undiagnosed GCA, but I feel we'll never know (his care team was not very concerned at all about managing his PMR and finding a way to continue prednisone/IV steroids, even after he was stabilized) because they never assessed for it and he was on prednisone for weeks before the stroke and eventually while he was hospitalized.

I won't lie; it's been a hard road. It's been almost a year since the stroke, and we are not where we hoped to be with recovery. And at the same time, we're dealing with managing PMR flares, including one he had while hospitalized because they weren't monitoring his ESR, as we recommended and requested, until we could get a rheumatologist on board to help.

Last week, I thought to search here to see if there was a thread about PMR/GCA, and here I am. I'm writing to say I'm grateful for all of you sharing your stories. My dad also requires a very slow taper; from 30 mg, he's been reducing by 2.5 mg because going down by 5 mg, even at a higher dose was too much. I was dimly aware of the impact on adrenal function from long-term prednisone use, but I didn't realize it could take so long to get off prednisone, that adrenal insufficiency may be more common (at least judging from this thread), or that there was an alternative medication. We see his rheumatologist next week, and I'm going to ask about Actemra.

Wow. My father has PMR (and may or may not have had GCA) and is very sensitive to medications. He's currently been holding at 7.5 mg prednisone for the last 6 weeks due to a possible flare. For any of you taking Actemra, did you have noticeable side effects or discomfort that might have been related to it?

I want to thank all of you for sharing your experiences and hope each of you is feeling some relief. I found Mayo Clinic Connect because I became a Mayo patient, but haven't been using it regularly; I have chronic pain, an autoinflammatory arthritis, and other related conditions. However, my dad developed PMR suddenly, a little over a year ago. It took weeks to diagnose, even after we suspected PMR, because his primary care provider did not know what to make of his sky-high ESR and elevated CRP. Even after my family asked him to look specifically into PMR, his team was extremely reluctant to begin a trial dose of prednisone or consult with a rheumatologist, let alone connect us with one. Eventually, he must have done the research and conceded. We got lucky and found a rheumatologist recommended by a friend who had an appointment opening within a week. But a few weeks later, my dad had a severe stroke (a known and severe complication of GCA, as most of you probably know). The neurologists told us it could not have been related to undiagnosed GCA, but I feel we'll never know (his care team was not very concerned at all about managing his PMR and finding a way to continue prednisone/IV steroids, even after he was stabilized) because they never assessed for it and he was on prednisone for weeks before the stroke and eventually while he was hospitalized.

I won't lie; it's been a hard road. It's been almost a year since the stroke, and we are not where we hoped to be with recovery. And at the same time, we're dealing with managing PMR flares, including one he had while hospitalized because they weren't monitoring his ESR, as we recommended and requested, until we could get a rheumatologist on board to help.

Last week, I thought to search here to see if there was a thread about PMR/GCA, and here I am. I'm writing to say I'm grateful for all of you sharing your stories. My dad also requires a very slow taper; from 30 mg, he's been reducing by 2.5 mg because going down by 5 mg, even at a higher dose was too much. I was dimly aware of the impact on adrenal function from long-term prednisone use, but I didn't realize it could take so long to get off prednisone, that adrenal insufficiency may be more common (at least judging from this thread), or that there was an alternative medication. We see his rheumatologist next week, and I'm going to ask about Actemra.

I have an autoimmune inflammatory arthritis with uveitis diagnosed in my early 30's. I'm now 68 so it has been a difficult road. My rheumatologist added PMR on top of everything else when I was 52. She says I have a full range of rheumatology problems but generalizes everything as "systemic inflammation."

I took prednisone in my younger days. I needed large doses but only short term and I could get back into remission easily. Remission only lasted a year or so until I relapsed again and needed prednisone again.

PMR was something new and different for me when it was diagnosed. It was comparable to inflammatory arthritis so there was some confusion at first. Then again the two conditions are different.

Both inflammatory arthritis and PMR wouldn't exist in an ideal world. Unfortunately, the two conditions do coexist and symptoms overlap to a large extent. I can only sympathize with both you as and your father.

My rheumatologist didn't always distinguish one thing from another. Prednisone doesn't stop the inflammation caused by PMR from happening. Prendisone only manages PMR inflammation to a certain degree. My rheumatologist said PMR tended to get in way of other treatment options that are more available for other autoimmune conditions. Nothing works perfectly for everyone.

I was pleasantly surprised when Actemra worked so well. My rheumatologist is now saying "PMR" and "remission" in the same sentence. There has been a huge improvement in the way I now feel. My ophthalmologist would rather I be on a different biologic but Actemra was my choice.

Likewise, I haven't had any significant side effects from Actemra but that doesn't mean there aren't any. I'm being monitored closely and Actemra can be easily stopped for any reason. It is a huge advantage to be able to stop a medication when the situation warrants it to be stopped.

I have stopped Actemra a few times but not because of infections or side effects. My symptoms returned but only gradually. It wasn't like a major flare that people are prone to have.

I needed to stop Actemra for about 6 months during Covid because of supply chain problems. Actemra was being used to treat severely ill patients with covid. There was something reassuring about Actemra being used for that purpose. It was interesting how my body reacted to Actemra being stopped.
https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-drug-treatment-covid-19#:~:text=Actemra%20is%20a%20prescription%20medication,hospitalized%20patients%20with%20COVID%2D19.
Actemra isn't approved for PMR so it may be difficult to get it prescribed for your father. However, Kevzara is now approved for PMR so it might be more readily available. Both medications are similar and somewhat restricted to patients who don't respond well to corticosteroids. It sounds like your father may be one of those patients but I'm not a doctor. I refrain from giving any medical advice but I like sharing my experience with Actemra.

Sorry, I might get too excited about Actemra when I scroll up and see how long this is.

@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through this too. This is really helpful information to hear. I didn’t even know there were potential alternatives to prednisone (off-label or not). He is on Medicare, so you’re right and it’s possible an alternative may be difficult to obtain or get coverage for. I’m no stranger to using biologics off-label. I take Humira and it’s constantly causing confusion because I have a different diagnosis that’s not super uncommon but apparently not well known (I have seronegative spondyloarthropathy, which is related to the more common ankylosing spondylitis, but it only affects every other joint except the spine >_< and does not cause elevated inflammatory markers, making it difficult to diagnose). Thanks again.

@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through this too. This is really helpful information to hear. I didn’t even know there were potential alternatives to prednisone (off-label or not). He is on Medicare, so you’re right and it’s possible an alternative may be difficult to obtain or get coverage for. I’m no stranger to using biologics off-label. I take Humira and it’s constantly causing confusion because I have a different diagnosis that’s not super uncommon but apparently not well known (I have seronegative spondyloarthropathy, which is related to the more common ankylosing spondylitis, but it only affects every other joint except the spine >_< and does not cause elevated inflammatory markers, making it difficult to diagnose). Thanks again.

@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through this too. This is really helpful information to hear. I didn’t even know there were potential alternatives to prednisone (off-label or not). He is on Medicare, so you’re right and it’s possible an alternative may be difficult to obtain or get coverage for. I’m no stranger to using biologics off-label. I take Humira and it’s constantly causing confusion because I have a different diagnosis that’s not super uncommon but apparently not well known (I have seronegative spondyloarthropathy, which is related to the more common ankylosing spondylitis, but it only affects every other joint except the spine >_< and does not cause elevated inflammatory markers, making it difficult to diagnose). Thanks again.

Hi Emo, I just thought I'd let you know that I have Medicare and BC/BS and, for three years, have had no problem or interruption in getting my Actemra. I had a different insurer and it used to come from CVS Specialty Pharmacy in a cooler, four boxed Acupens at a time. Now that we have Medicare along with BC/BS, it comes from Carelon Pharmacy. I just thought~~are you in the States? (It is a whole different ballgame in the UK)
The Actemra was prescribed for me because I needed it in addition to steroids, not as an alternative. As a steroid-sparing agent, it can enable people to taper off pred in a safer manner. $$ Good news, I have only a $45 co-pay for two months and then nothing....I think I come under a 'catastrophic medical'...though I don't feel catastrophic.
You seem really well-informed since you have certainly had your share to deal with. I have a dear friend with ankylosing spondylitis. I'm thankful your spondyloarthropathy was diagnosed since you had no inflammation markers. I'll be honest~I'm going to Google spondy---- now. My best~💞

Thank-you for the update. Sounds like you are making progress with tapering prednisone.

I developed peripheral neuropathy within a year after PMR was diagnosed. I wasn't diabetic and I'm still not diabetic despite many years of prednisone use.

Don't do what I did in regard to the peripheral neuropathy.. I actually told my primary care doctor that the numbness and tingling in my feet was "the least of my worry because it didn't hurt." I regret saying that because now peripheral neuropathy is diffuse and is affecting my arms and legs. An EMG/NCS should be done but that didn't identify the cause. The neurologist said my peripheral neuropathy was idiopathic.

An endocrinologist shed some light on the subject when my insulin level was found to be very high. The endocrinologist said that even though I wasn't diabetic, I did have insulin resistance. Impaired glucose regulation can lead to peripheral neuropathy. He said prednisone also leads to metabolic syndrome and peripheral neuropathy is a common result. I knew that prednisone wasn't helping my overall health and well being but I didn't fully appreciate everything that prednisone was doing to me.

I'm glad that Actemra seems to be working. Things get really interesting when you get below 10 mg of prednisone. There is the problem with adrenal insufficiency that creeps up on you when you try to reduce too fast after you get below 10 mg. Secondary adrenal insufficiency can only be pinned on prolonged use of prednisone in most cases.