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

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~💞

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.

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 .

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.

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.

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.

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.💞