Newly diagnosed

@tuckerp I understand it’s about finding the the right balance. Like you said everyone’s tolerance is different. I’m quickly learning, with PMR, everyday is different which can make finding the right balance difficult. I too lost my husband to cancer and saw my mom through it as well. I do have experience with “the devils tic tacs” just never thought I’d be taking them too.

@franklinlala With my first symptoms of PMR my doctor prescribed me 32mg prednisone for 3 days, (after a few hour’s symptoms gone) then tapering down every fourth day to 16, 8, 4 so in total 12 days of prednisone. My symptoms returned on day 13 in the evening and were back on day 14. But my doctor told me it is a way to be sure you have PMR because when your pain would remain when taking prednisone they have to search for another diagnose.
I was referred to a rheumatologist after that and she wouldn’t want to give me prednisone because CPR was not elevated at that time. I had to wait for 4 weeks in tremendous pain (!!!) to have a PET scan. Painkillers did not help at all, I avoid taking medication but I have never been more happy when I could take prednisone again.

@ndep I’m cringing at the thought of going 4 weeks without relief from the pain all because some doctors are unaware of the idiosyncrasies of PMR. Your endocrinologist obviously wasn’t aware normal CRP isn’t always an indicator that you don’t have PMR. Thanks for sharing your unique tapering experience. Like my situation, it’s not typical, and it’s helpful to know it wasn’t effective at such a fast taper. I emailed my rheumatologist, and he has already filled another prescription for me to continue on so I don’t go through what you did. Thanks again, hearing from you was very helpful.

@franklinlala My mistake, your rheumatologist, not endocrinologist. That’s even more surprising the withholding of prednisone. Glad you are back on track.

@franklinlala I am not a Dr. I have been in the same place with either my wife or myself looking for answers on AI then making a list for my Dr. However, I doubt that there is a single pre med student that does not know the side effects of corticosteroids. Its a wonderful drug at treating inflammation and slowing your immune system. Its also a horrible drug to be on for any length of time. All Dr's know that. Its treats a simple immune system response such as asthma to the swelling in the brain from cancer. It starts by swelling of face, thickening of the neck, tissue paper skin, weakens your bones, increases cholesterol, increases blood sugar, increases blood pressure, gastritis issues, IBS, tingling in the hands or feet, weight gain and weaken your immune. Probably others. A Dr is then faced with treating those conditions. On top of that most of us will have or have other conditions at the same time. You go from a reasonably healthy person to a chronic patient. My PA allowed me to stay on steroids but ran tests for about 15 different things. You definitely need to be your own advocate and switch Dr's if you have to but simply treating with prednisone could be missing a much bigger issue. I would be satisfied if my Dr wanted to keep digging and testing. I would hate if they simply treated and missed a brain tumor like glioblastoma.

@tuckerp
You are right that prednisone can have a lot of side effects, and some of them can be very serious. When I started taking prednisone to treat GCA and PMR, it was like switching to a different disease. But there is a lot of variation in people's symptoms and how they respond to treatments. Prednisone saved my life and my vision, and I'm grateful for that. I took it for a little less than 14 months (I'm still taking Actemra). The worst side effect for me was insomnia, but it went away once I got down to 40 mg per day. I gained 4 pounds total, and I had a little bit of a moon face. My cholesterol went up while I was on prednisone, but I didn't need to take medication for it. I had some issues with mood swings, but nothing too serious. If I had any of the other issues you listed, they were very minor. I was able to taper off prednisone by taking Actemra, and the side effects all faded away over time. I'm feeling really good now.

It bothers me to see people demonize prednisone. Not everyone will have serious side effects, and if they do, most of the side effects can be offset with diet, exercise, or other medications and supplements. I suffered quite a bit while I had untreated PMR and GCA, and my quality of life was much better once I started taking prednisone (besides it saving my life and vision). I hate the idea of people suffering unnecessarily. They won't know how prednisone will affect them until they try it. They shouldn't assume they will have all of the possible side effects.

Hopefully there will be a better alternative soon for prednisone that helps PMR and GCA immediately, but for the time being, it's the best we have.

@tuckerp

I wish there was a good way of describing the good and the bad of Prednisone. People either love it or hate it. I had to rectify the good with the bad of prednisone in an unusual way. I told my ophthalmologist that my eye was a "lost cause." I absolutely believed my vision wasn't going to improve. I said that I was blind since I couldn't see my hand in front of my face but "I didn't care if I was blind because I felt great!"

My ophthalmologist did a quick test by shining a bright light into my eye and asked me what color the light was. When I reported the light was white my ophthalmologist reassured me that I wasn't blind yet. He said to increase my dose to 100 mg but not any higher. If 100 mg didn't work something else needed to be tried because "I wasn't supposed to feel too good about the possibility of being blind."

Fortunately 100 mg of prednisone worked and I was able to quickly decrease my dose. The lesson I learned was how prednisone altered my perception of reality but I wasn't supposed to feel too good about a bad situation. I believe in a palliative care situation it is better to feel as good as possible.

Of course it can. I’d like to show some doctors some of these articles- evidently they need to be more open to other data reports. Good luck 🍀

I’ve been newly diagnosed with PMR in late December. The treatment plan is 15mg Predisone for 30 days, then reducing to 10mg for 30 days, then 5mg for 30 days. The intense pain seemed to resolve after day one.
I had never heard about this auto-immune disorder and have been reading more about it. Joining this online group has been helpful. I am surprised at how different the treatment plans are for various individuals using Prednisone and other prescriptive medications.

My blood work was nearly normal but all other PMR symptoms were present and 40 mg of prednisone knocked them out. My primary care doctor said it was not uncommon to have normal or nearly normal bloodwork but still have PMR and a positive response to steroids was diagnostic.

After 9 months I have tapered down to 12.5 mg of prednisone a day and am now on Kevzara with hopes that I will be able to get off steroids in the next few months. For what it's worth, three different doctors--two of them rheumatologists--have suggested three different rates of tapering, none of which work for me. The practical knowledge of this group is more useful and more attuned to the reality that all of us are different. I now taper by .5 mg every two weeks or so. The pain I experience may well be osteo not PMR and a daily 650 mg of Tylenol helps a lot.