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Has Prednisone/Actemra worked to completely heal GCA?

Polymyalgia Rheumatica (PMR) | Last Active: Jul 12 9:11am | Replies (12)
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@dadcue

Trigeminal Neuralgia was dreadful. I didn't ever know when those flares would happen. The wind was one of my biggest fears. Being afraid to go outside whenever the wind was blowing was very stressful. Even worse was being caught outside when the wind picked up. Trying to escape from the wind was nearly impossible sometimes.

"Pain occurs in intermittent bursts that last anywhere from a few seconds to two minutes, becoming more and more frequent until the pain is almost continuous."
https://www.hopkinsmedicine.org/health/conditions-and-diseases/trigeminal-neuralgia
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Prednisone helped but I couldn't convince a neurologist that it helped. He said trigeminal neuralgia wasn't treated with Prednisone.

I really believe the stress from trigeminal neuralgia might have triggered PMR. I thought PMR was a blessing because suddenly I had a legitimate prescription for Prednisone that I could take all the time. Until PMR was diagnosed, I had to wait until the next uveitis flare when my ophthalmologist prescribed a massive dose of Prednisone.

The neurologist was probably right all along. Prednisone didn't solve the problem and never does in my opinion. The surgery I had for trigeminal neuralgia made it so it isn't much of a problem anymore.

I was able to decrease how much prednisone I took after the surgery for trigeminal neuralgia. However, I was still taking 10 -15 mg of Prednisone daily. Actemra allowed me to get off Prednisone completely.

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Replies to "Trigeminal Neuralgia was dreadful. I didn't ever know when those flares would happen. The wind was..."
isabelle7 | @isabelle7 | Jul 12 9:11am

@dadcue

I never heard of a disease caused by the wind. How awful! I'm glad surgery helped and that Actemra got you off the prednisone. I can see why you wanted the prednisone and also why you wanted to get off it.

I've read that stress can trigger PMR so you might be right about that. My husband's favorite brother was sick for years. We talked to him every single night for many years and then he finally passed away last year. Right after that, my husband developed PMR and I've always believed the two were connected. Then he developed GCA and now osteoporosis from taking high-dose steroids for over a year. He had no choice but doctors could have warned us about the effects it can have on bones. We found out quite by mistake when a fracture showed up on my husband's spine that wasn't there months earlier. I asked for a bone scan and more tests and he has severe steroid-induced osteoporosis. Live got a whole lot harder with that because the prednisone and Actemra were treating the other conditions. Osteoporosis is a whole new and complicated issue. Had they warned us he could have been started on meds to avoid getting this so I'm frustrated. He's not unable to lift anything over 5 pounds, can't bend down and can't do any form of exercise. He can walk short distances. He now has three compression fractures, one he got from emptying the dishwasher. We have no idea how he got the other two and he's at high risk for more. We're finally getting treatment for it but that was a whole ordeal in itself.

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