PMR or PREDNISONE

My guess is the shakes and insomnia are more likely prednisone side effects. I took prednisone for many years before PMR was diagnosed. The shakes and insomnia were definitely Prednisone side effects. The inflammation inside my eye was called uveitis and prednisone was the treatment. Uveitis inflammation wasn't systemic inflammation like PMR. Uveitis didn't have systemic effects but large doses of prednisone did.

The rest of what you mentioned it could be either PMR or prednisone. My guess is "fatigue" is from PMR because prednisone initially is energizing until the fatigue of a greater magnitude sets in. The "overwhelming fatigue" I felt in the later stages of PMR was probably prednisone related.

Pain in the early days of PMR might be due to not taking enough Prednisone. Pain as you taper off Prednisone in the later stages of PMR might be because of taking Prednisone for a long time. The pain gets you in the beginning of PMR. Pain also has a way of getting you as you taper off Prednisone regardless of whether or not PMR is in remission.

I didn't have brain fog but my memory is foggy about that particular problem. Many people say brain fog is caused by both PMR and Prednisone. In the beginning, I was too euphoric to have brain fog.
https://www.verywellhealth.com/could-prednisone-cause-mood-swings-3867133#:~:text=Mood%20swings%20are%20a%20possible,provider%20about%20adjusting%20your%20dose.
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The euphoria I felt in the beginning didn't last very long. The mood swings started happening because many people started to ask me how much Prednisone I was taking. That question always made me irritable.

Fortunately for you it might be easier to tell. Literature mostly says PMR can last 1-3 years. Of course many of us spent months trying to figure out what was wrong. But you just started treating in April. Most likely still some PMR inflammation. But your question is valid. Prednisone tapering can also cause the PMR to flare back. Your will need to work closely with your Dr and do the testing necessary to see which one it is. Other diseases can also show up during this time. So its not a science to say which one it is. But it can help to know for better treatment. Generally prednisone pain only comes back when you try to taper. When you get to around 5mg then your body runs out of cortisol. Prednisone side effects will be minimal in the beginning. Thats what I found.

You likely will need therapeutic doses long term. Be proactive about mitigating side effects. Dexascan and metabolic labs, calcium and vitamin D.
I used my home BP monitor weekly. With a family history of heart and DM
type II I bought a glucose monitor for monthly AM fasting checks.
Walk and stretch as you can tolerate. Prednisone tastes yucky so I took with
food. Doesn’t hurt to take a calcium antacid or Pepcid at night.
I went on statins as the systemic inflammation checked me into the higher
cardiac risk rating. They may be anti inflammatory as well.
I cut my alcohol consumption and believe the Mediterranean diet is helpful.
Hang in there. Keep aware of your lab results and advocate for yourself.
Keep your consultants communicating. This group has good input from
patient experiences.

My family's had a similar experience to @tuckerp. (My dad has PMR.) He experienced some predisone side effects in the beginning (insomnia, hyper-alert) but once it quashed the PMR-inflammation, he felt great.

Flare-ups occurred during the taper, but became fewer when we slowed the taper, and things continued on like that until he got to around 7.5 mg, which per his Endocrinologist is around the amount required to replace the body's cortisol and your body needs to start kicking in to make its own cortisol, but after the prednisone has taken over for so long (it's been 2 years), it's easier said than done. She said a lot of people start having more prednisone tapering issues around that time, but...flares can still happen, which is maddening.

Getting clarification on the GCA should help because that would require a higher dose for treatment anyway, so it might address some of what you're feeling.

When I started taking prednisone January 2022 I had the same exact symptoms and was very concerned trying to get to the bottom of them. They eventually went away.

3 1/2 years and I still have problems with telling difference

No

Hi @sherylp, My first go round with Prednisone, at 40 mg, tapering down by 5 mg every two weeks, for GCA, I had insomnia, euphoria, and a moon face. I was off it a year and a half, then GCA came back. Now I don't have insomnia, but I've experienced some shakiness and urinary frequency. Both times it stimulated my appetite, which is good, as anorexia is a symptom of GCA.

Well my goodness I can totally relate to your situation. I'm very new at this and I was diagnosed at the same time you were. I suffered with symptoms from January until April of this year. Finally I was sent to a rheumatologist after going to many different Specialists to rule out other autoimmune disorders. When I was put on Prednisone it was like magic. I guess we all share that same story. It was like coming out of a darkness that I was never ever familiar with. After taking the Prednisone for less than 48 hours it seemed like I got my life back. What a delusion. I've often commented on this forum here that I feel like a prisoner on prednisone. I'm not on a very high dose. It's only 10 mg. And I'm being tapered very slowly. So now since April I'm down to 8.5 mg. I hear you when you say that sometimes you don't know the difference between the PMR and the prednisone symptoms. I cannot differentiate between the two sometimes because I have breakthroughs or what my doctors referred to as flares. I'm just so very confused about this whole journey. It's like will I wake up one day like I did in January and realize that I cannot move and that I'm in excruciating pain. The PMR is a debilitating disease that has absolutely no cure. I realize that now. Sadly I think I misunderstood when they put me on prednisone. I thought maybe I would never have to take it longer than a few months. I realize now after the very helpful feedback on this forum that people have been on Prednisone for more than a year sometimes a maintenance dose for a few years. Because there is no cure, we are faced with being on a medication that causes so many significant side effects. I just have to say that I can't be thinking about the negatives in this one. I'm 75 years old. And all I can say is that I have an attitude of gratitude. I could very well have been in a nursing home because of PMR. So this I guess is the new normal for me.

Thank you for your response. You’re absolutely right we could be so much worse off. I’m 72 and very independent. It’s so hard to pace myself and try not to overdo or stop when the job is not finished. This forum has been great for testimonials of folks who live this life now. I very much appreciate it also! Here’s to healing and healthier days ahead!