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@dadcue

My first experience with an autoimmune disorder wasn't PMR or GCA. It was triggered by an infection. The disorder I first encountered derives its name from a "reaction to an infection" and is called Reactive Arthritis (ReA).

ReA pain was the weirdest pain I have ever experienced. Going to sleep at night was suddenly turned into a harrowing nightmare of excruciating back pain. However, I would wake up and still have pain. Instead of saying I was going to bed to sleep, I would say my bedroom was a torture chamber and I was going to bed to be tortured.

If the nightly torture wasn't enough, my encounters with health care providers during the day weren't very helpful. I don't think they understood the amount of pain I was having every night. I wasn't having too much pain during the day during my visit with a doctor. The recommendation was ibuprofen and a new mattress.

The nightly torture went on for a couple of months. I'm not sure if all the diarrhea was an enteric infection OR from toxic amounts of ibuprofen. In any case, I wound up in the emergency room severely dehydrated and believing I was on the verge of death.

Fortunately, by then I had an extremely inflamed red eye that looked hideous to the emergency room doctor. After a few liters of IV fluids, there was more concern that I might go blind and almost no concern for my back pain and diarrhea.

It was an ophthalmologist who gave me my very first dose of prednisone. I didn't take Prednisone continuously for the next 20 years but I took incredibly high doses and tapered off quickly for recurrent flares of uveitis. I had recurrent back pain too but prednisone made that disappear each time so I never complained about all the back pain I was experiencing.

I also took Prednisone for trigeminal neuralgia (TN) except the neurologist said TN wasn't treated with Prednisone. I naturally treated myself and didn't see the neurologist anymore. I treated TN with Prednisone until the facial electricity wouldn't stop. I was dehydrated and in the emergency room again. It was difficult for me to eat and drink when my face was electrified. Multiple sclerosis was ruled out after brain surgery stopped TN from happening.
https://www.webmd.com/multiple-sclerosis/ms-trigeminal-neuralgia
and
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=But%20while%20compression%20by%20a%20blood%20vessel,trigeminal%20nerve%20also%20can%20cause%20the%20condition
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I don't recall exactly when PMR was diagnosed. I just remember PMR started after I decided to throw away my entire stash of Prednisone. My cumulative dose of Prednisone was massive by then. At first when PMR symptoms started, I was told I couldn't take Prednisone anymore.

Finally, PMR was diagnosed nearly 20 years after my first dose of Prednisone, I remember thinking that PMR was a blessing to me. I was prescribed Prednisone daily for another 12 years starting out with a 40 mg dose.

Prednisone was a big part of my life for nearly 35 years. I'm happy to be off Prednisone. I think Prednisone tried to kill me a couple of times but I was saved in an ICU. Prednisone did relieve a lot of pain so my death would have been relatively painless.

Actemra has been substituted for Prednisone and I couldn't be more pleased. Not only was I able to stop Prednisone, I also stopped many medications that were treating Prednisone side effects.

I'm extremely tired of everything. However, the overwhelming fatigue was probably due to adrenal insufficiency because the fatigue isn't overwhelming anymore.

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Replies to "My first experience with an autoimmune disorder wasn't PMR or GCA. It was triggered by an..."

Wow, that is a long-term battle! Being on Prednisone that long certainly must have played havoc on your body. I could not tolerate it for even a year. Although, I do recognize it was a miracle drug for pain relief, I wanted off of it because of the side effects.
It is so weird what our bodies go through with all these strange, unexplained symptoms, dealing with them daily, yearly etc. It is no wonder we are tired of it all, waiting for answers and living our own personal hell.
Wishing you and everyone here a better year ahead,
Jeanne

@dadcue
Wishing you the best in your health journey in 2025…and may you be pain free!