Another detour

[PMR2011]

Hi all,

I took the plunge and started Actemra in January (PMR in 2011, then GCA in May 2018). As I started tapering the Prednisone my resting heart rate increased. For several weeks I blamed it on Pred withdrawal. Then could feel it pounding in my chest and swishing in my ears. Made it tough to sleep! So went to PCP and turns out I have hyperthyroid! Go figure, I was diagnosed in 2011 (when figuring out aches which ended up being PMR) as hypothyroid and put on small dose of levothyroxine which stopped 5 years later per labs. My question is, does anyone else have hyperthyroid and could it be due to GCA or concurrent inflammation?

By the way Actemra is going well. No side effects, feel better (aside from the thyroid!) and tapering.

[PMRpro Ambassador]

Not necessarily the GCA but possibly the autoimmune process. My daughter had a/i thyroid problems and she would swing from hypo to hyper in a matter of weeks. Which of course made managing it rather tricky! She's fine now.

[PMR2011 in reply to PMRpro]

Glad she is fine. Like mother like daughter with a/i condition? I’ve already put my girls on notice they might experience something due to Genes!

[Carrollee]

Hi PMR2011. The first a/i disease I had was Graves' disease (hyperthyroidism) and I was warned I could get other a/i diseases. It went after 18 months of treatment. A few years later along came pmr then GCA. I think it just means that once your immune system has acted in that way it's capable of doing it again. Hope things settle and pleased the actemra is working for you. All the best cc 🤗

[PMR2011 in reply to Carrollee]

Thanks Carrollee, it’s a relief to hear it can resolve with treatment. You are lucky it went before getting PMR. Symptoms of Pred taper, GCA and Hyperthyroid seem to get all mixed up for me!

[Carrollee in reply to PMR2011]

Yes it can all be so confusing ..is it this, that or the other? I took carbimazole and tapered down over the months. Bye for now cc 🤗

[SheffieldJane]

I have Graves Disease, diagnosed in 1984 when I was thyrotoxic. After radio iodine treatment, some years later, I am on 125 microgrammes of Thyroxine for life. There has been unusual fluctuation since PMR requiring a slightly lower dose.

[PMR2011 in reply to SheffieldJane]

Hi Sheffieldjane. Interesting, I was wondering if the inflammation of PMR/GCA stimulates the thyroid. What was it like to have Thyrotoxicosis?

By the way, I want to thank you for being such a positive cheerleader on this forum. Even if you don’t have an answer, you provide encouragement and empathy in large measure! It is much appreciated.

[PMRpro Ambassador in reply to PMR2011]

The pred changes the balance of the hormones in some way - it is quite a common experience I htink.

[SheffieldJane]

Well I was quite young so when I had thyrotoxicosis, I was delighted that I was eating like a horse and the weight was dropping off. I had lots of manic energy. A friend took my pulse in a pub one night and it was something ridiculous like 180 . When I think how much I worry about symptoms now and I was bouncing around like a ticking time bomb back then. Oddly, I have no memory of feeling ill. I suspect that the definitive treatment left me permanently a bit below par. It is all connected I am sure. They all seem to be diseases of the energy. Thank you for the nice things you said. I get much more from this forum than I could possibly give. It’s like a shining beacon in a pretty murky world.