1. < Polymyalgia Rheumatica (PMR)

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

Posted by dar9216 @dar9216, Jan 7, 2021

I was diagnosed a little over two years ago with GCA (Giant Cell Arteritis) and polymyalgia. Down to 1 mg of Prednisone/day, started at 60 mg. Anyone else have this combination?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

emo | @emo | May 18, 2023
In reply to @grammy82 "Hi Emo, I just thought I'd let you know that I have Medicare and BC/BS and,..." + (show)
@grammy82

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~💞

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Thanks! That's good to hear. Well, we have an appointment with my dad's rheumatologist on Monday. An alternative infusion may not be necessary or appropriate, but I like knowing there's an option that helped other people. He's been on 7.5 mg of prednisone for 6, going into the 7th week, so it's possible when we resume the taper things will go smoothly...or not >_<

He has Medicare + BCBS, and we are in the States, so here's to hoping.

And haha, I am glad I got diagnosed with "seronegative spondy" (as my rhematologist calls it) too! When I think of how close I came to not getting treatment, it's a bit scary. I did not mention this because it is the PMR threat after all >_

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grammy82 | @grammy82 | May 18, 2023
In reply to @redboat "Thanks for your comments. My Prednisone tapering schedule goes down to 10 mg in 2 weeks,..." + (show)
@redboat

Thanks for your comments.

My Prednisone tapering schedule goes down to 10 mg in 2 weeks, and then slowly decreases by 1 mg/day every 2 weeks after that. So far, there have been no relapses. If no relapses occur, the schedule shows me completely off Prednisone in October. I am thankful that at my current level (20 mg/day), my sleep has returned, and I am getting 8-9 hours per night. Due to the high dosage of Prednisone I was on, I only slept about 4 hours a night from March until early May, and that was tough.

As I taper off Prednisone, there are various weird pain occurrences, but so far they are transient, except for the nerve neuropathy in my hands and feet, and mild burning in my lats, shoulders, and upper arms. Those are always there.

Early on, before I was on Actemra, my inflammation markers did not go to normal with 20 mg/day of Prednisone. Also, before I was being treated, the inflammation markers were extraordinarily high; my CRP was about 10x higher than most with PMR before they are treated. I have seen clinical instructions that anyone with these two characteristics should be considered as likely to have some level of non-cranial Giant Cell Arteritis (GCA). My Actemra & Prednisone treatment regiment actually is almost exactly the one used to treat the GCA patients that received weekly Actemra injections reported in the New England J. of Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849

Perhaps non-cranial GCA explains some of my symptoms, such as a strong feeling of charley horse in the center of both quadriceps. This was experienced before the proper levels of medication were found.

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I'm so happy to hear that your regimen of medication is bringing you a measure of comfort! Sometimes it is hard to believe there is an 'end-game'~~the rocky road smooths out~! I am on pred and Actemra and am down to 3 mg per day with no bumps, with the exception of those 'feelings' that pass in a few days after tapering. I taper by .5mg every 3-4 weeks but I'm staying put at three until I make a few trips. Good for you. 💞

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valerie6062 | @valerie6062 | May 18, 2023

Am tapering from 50mg about 4 months ago and am now on 12.5 mg. After reading these comments I am feeling quite nervous about tapering any further. I am taking methotrexate but still have 3 doses to go before the 6 week dose when I am told its effect will kick in. This is my 2nd attempt at tapering into single digits. I was on 7 mg and suddenly had a double vision episode and my rheumatologist swooped me back to 50mg. I don't want this to happen again obviously.It is such a roller coaster ride .

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1 reply
grammy82 | @grammy82 | May 19, 2023
In reply to @valerie6062 "Am tapering from 50mg about 4 months ago and am now on 12.5 mg. After reading..." + (show)
@valerie6062

Am tapering from 50mg about 4 months ago and am now on 12.5 mg. After reading these comments I am feeling quite nervous about tapering any further. I am taking methotrexate but still have 3 doses to go before the 6 week dose when I am told its effect will kick in. This is my 2nd attempt at tapering into single digits. I was on 7 mg and suddenly had a double vision episode and my rheumatologist swooped me back to 50mg. I don't want this to happen again obviously.It is such a roller coaster ride .

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I was diagnosed in August of 2019 with GCA. By October of that year, I was on 80mg of methylprednisolone and Actemra weekly injections. I certainly understand your concern and apprehension. Even though I had gotten to 40 twice and down to 15 once in 2022, I had to go back up to 40 in a short time. I honestly can't remember when/why I was switched from methylprednisolone to prednisone---but I just got down to single digits for the first time this year.

Vision is so precious, I'm a big believer in slow....slow tapers. My rheumatologist would have me taper .5mg every three to four weeks. So, you have moved along fairly quickly. Please be patient and know that I and others are sitting beside you on that roller coaster ride. In my experience, slow is SO worth it. The support of groups like this kept me going mentally, just not being alone and feeling like I had more questions than answers.

Take your time and listen to your body. When you are fatigued, rest. It is life-changing for sure but there is light at the end of the tunnel. We have to accept that the disease is in charge, and we are trying to manage it as best we can. It will quiet down when it is ready. My best....💞

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grammy82 | @grammy82 | May 19, 2023
In reply to @tsc "Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for..." + (show)
@tsc

Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for four months, full blown and my inflammation markers, ESR and CRP, were only slightly elevated so I wasn't diagnosed. I then got terrible neck stiffness, scalp tenderness, short little stabbing pains on the side of my head, anorexia and anemia. Nine months after the first blood work my ESR and CRP were off the charts. I had a temporal artery biopsy and was diagnosed with Giant Cell Arteritis and put on 40 mg of prednisone. I'm down to 1 mg now.

Were you ever prescribed prednisone and did it help? Usually the dosage for PMR is 15 -20 mg and the relief is often described as "miraculous." The dosage for GCA is higher. It's serious - untreated it can cause stroke or blindness. Have you had problems with your jaw when eating, unable to chew, or difficulty seeing? Has any doctor ever suggested a temporal artery biopsy?

If symptoms don't respond to prednisone, it could be an infection, malignancy, connective tissue disorder or hypothyroidism. I got this information from a diagnostic algorithm for PMR from Cecil and Goldman's Textbook of Medicine.

I hope you get some relief and find some answers soon.

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I have GCA.....and it is possible to have PMR or GCA without the ESR and CRP being elevated. If you suffer from these symptoms, please keep looking for answers.

I had all the symptoms in late 2018 through 2019, even jaw claudication, and I absolutely couldn't chew. It was not until I woke one August morning in 2019, blind in one eye that I was 'thought' to have GCA. The ER I was in at the time in Maine never gave me any steroids but made an appointment with an ophthalmologist and scheduled me for a temporal biopsy in four days! I didn't know the difference and I don't think many people I encountered were any more familiar with GCA. After the biopsy, I was put on first 125mg pred, then 80 mg methylprednisolone along with Actemra.
It has been a struggle..as you all know...I'd lost some of the sight in my right eye also. My ophthalmologist referred me to a neuro-ophthalmologist who put me on Gabapentin for optic neuritis and I have good vision in that eye now..just a few blind spots...little.

Fast forward three years later; I'm on Actemra and just 3 mg of pred. So, yes, please be vigilant.💞

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tillysam | @tillysam | May 19, 2023

In light of this conversation about advocating for yourself, I want to tell you what happened last week. I woke up around 1:00 AM and felt nauseated, lightheaded, cold, clammy and shaky. I had never felt like this and, for some reason, I immediately thought of a heart problem. I am aware that women present themselves differently when it comes to coronary problems. So, I called an ambulance. I told the EMT’s my theory about women presenting themselves differently. As it turned out, the EMT’s did not take me seriously
and, in turn, neither did the hospital triage nurse. I was told to sit in the waiting room( which I did for 4 hours).
I finally got into a room and, after another good hour, met the ER attending doctor. He listened very carefully and decided to do an EKG and have blood work done. Both came back not normal. He wanted to take my blood every couple of hours to see if there was any change for the better. That did not happen. He called in the cardiology team and they decided that I needed a heart catherization. Before I could even think, I was whisked away. To make a long story short, I had a heart attack!
The bottom line: you must be proactive and advocate for yourself. A lesson well learned.

REPLY
2 replies
moldy | @moldy | May 20, 2023
In reply to @tillysam "In light of this conversation about advocating for yourself, I want to tell you what happened..." + (show)
@tillysam

In light of this conversation about advocating for yourself, I want to tell you what happened last week. I woke up around 1:00 AM and felt nauseated, lightheaded, cold, clammy and shaky. I had never felt like this and, for some reason, I immediately thought of a heart problem. I am aware that women present themselves differently when it comes to coronary problems. So, I called an ambulance. I told the EMT’s my theory about women presenting themselves differently. As it turned out, the EMT’s did not take me seriously
and, in turn, neither did the hospital triage nurse. I was told to sit in the waiting room( which I did for 4 hours).
I finally got into a room and, after another good hour, met the ER attending doctor. He listened very carefully and decided to do an EKG and have blood work done. Both came back not normal. He wanted to take my blood every couple of hours to see if there was any change for the better. That did not happen. He called in the cardiology team and they decided that I needed a heart catherization. Before I could even think, I was whisked away. To make a long story short, I had a heart attack!
The bottom line: you must be proactive and advocate for yourself. A lesson well learned.

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Amen to looking after yourself.

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nativeoregirl | @nativeoregirl | May 20, 2023

Tillysam,

Thank God you’re ok! Hang in there, I know you’ll get through this and thank you for sharing! 🫂 Hugs Deb

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1 reply
grammy82 | @grammy82 | May 20, 2023
In reply to @tillysam "In light of this conversation about advocating for yourself, I want to tell you what happened..." + (show)
@tillysam

In light of this conversation about advocating for yourself, I want to tell you what happened last week. I woke up around 1:00 AM and felt nauseated, lightheaded, cold, clammy and shaky. I had never felt like this and, for some reason, I immediately thought of a heart problem. I am aware that women present themselves differently when it comes to coronary problems. So, I called an ambulance. I told the EMT’s my theory about women presenting themselves differently. As it turned out, the EMT’s did not take me seriously
and, in turn, neither did the hospital triage nurse. I was told to sit in the waiting room( which I did for 4 hours).
I finally got into a room and, after another good hour, met the ER attending doctor. He listened very carefully and decided to do an EKG and have blood work done. Both came back not normal. He wanted to take my blood every couple of hours to see if there was any change for the better. That did not happen. He called in the cardiology team and they decided that I needed a heart catherization. Before I could even think, I was whisked away. To make a long story short, I had a heart attack!
The bottom line: you must be proactive and advocate for yourself. A lesson well learned.

Jump to this post

That is a remarkable example of the importance of sticking to your guns and advocating for yourself...what strength you had in spite of what was happening in your body. Hopefully, you are doing well and have a good cardiologist~! You are amazing.💞

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1 reply
tillysam | @tillysam | May 20, 2023
In reply to @grammy82 "That is a remarkable example of the importance of sticking to your guns and advocating for..." + (show)
@grammy82

That is a remarkable example of the importance of sticking to your guns and advocating for yourself...what strength you had in spite of what was happening in your body. Hopefully, you are doing well and have a good cardiologist~! You are amazing.💞

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Thank you, grammy82

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