Prednisone love/hate support group

Good to hear you are no longer on prednisone, and thank you for sharing. What drug if any replaced the pred?

Actemra (tocilizumab) works for me. It was still a slow breakup process with Prednisone. My first breakup with Prednisone took about a year but only lasted a few weeks.

There was a trial of a second type of biologic that didn't work out. I went back on Actemra the second time after some dose adjustments were made. I tapered off Prednisone quickly the second time. I haven't needed to go back on Prednisone. I have now been free of Prednisone for almost 5 years.

I'm sure Dr. Megan would love to read your post but she isn't on this Mayo forum. She doesn't have PMR/GCA. She needed to take Prednisone for a life threatening autoimmune disorder. She says her experience taking Prednisone motivates her to try to help others. She has a Doctorate Degree in Pharmacy so she knows about medications and their side effects.

She has her own website which is very informative. You can find all the information she shares on the following link.
https://www.youtube.com/@PrednisonePharmacist
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The live Q&A already happened. Here is a video called "The Taper Trap" that was recorded and can be viewed. There is an awkward silence for the first minute.

Thanks so much for the info @dadcue !

I want to give a big shoutout to Dr. Megan for sharing such valuable information about prednisone! I've been using her Nutranize supplements and appreciate the thoughtful formulation.

As a registered and licensed dietitian, I’ve always been cautious about supplements. I firmly believe that if you maintain a healthy diet and don’t have underlying health issues, supplements can often be unnecessary—or even potentially harmful. Getting nutrients from wholesome food is usually the best approach.

However, prednisone changes how the body processes nutrients. I’ve taken it off and on for over a decade to manage asthma, and while the short-term use had its challenges, I’m now facing long-term prednisone treatment for PMR and am acutely aware of the side effects. In this case, supplementation makes sense.

When I examined the nutrition facts on Nutranize, I immediately noticed two things: the nutrient amounts were reasonable—without megadoses—and the ingredients were carefully chosen to support areas affected by prednisone. I give a lot of credit to Nutranize for helping counteract some of the many side effects of long term prednisone use.

PMR and Lymph Edema
Does anyone have Lymph Edema and PMR
After seeing multiple Rheumatologists-Internists-Orthopedists-and Neurologists-and Vascular experts, I was diagnosed with PMR and placed on Prednisone.
My internist sent me to a well known vascular doctor more more testing. The vascular expert said I do not have vascular disease and I do not have PMR. He told me to stop the Prednisone. [Low dosage 5.0mg per day]. He said I have Lymph Edema and to visit a PT center. Between the muscle and joint pain and now the Lymph Edema I am in a lot of pain. Cardiology-Liver and Kidney test are all normal. Any suggestions would be appreciated. I just want to know if there are others with PMR and Lymph Edema and how they are approaching pain control. Thanks!

Her channel is a fantastic resource for us! Thank you, Dadcue!

I think she is a fantastic resource too, I don't know her personally and I don't want to promote her vitamin formulation. I think her heart is in the right place and the information she shares is phenomenal.

If she makes some money from the sale of her vitamin formulation, I think that is only fair for the time and effort she spends doing her videos and educating all of us about Prednisone. She believes the vitamin formulation helps people who take Prednisone long term.

I took a regular multivitamin because my doctors were prescribing and adding more and more individual vitamins for me to take. I think there are many nutritional considerations that people on prednisone to treat inflammatory conditions need to be aware of. This is a complicated subject that is beyond my comprehension. It was easier for me to take a multivitamin.

Sometimes Dr Megan specifically addresses issues about PMR too. She has done a video about a question I had.

Agree. I take specific supplements, most recommended by my docs (internal medicine, endocrinologist, rheumatologist, ophthalmologist - everyone has recommendations). Am looking forward to watching her videos.

You see the same -ologists that I frequently see. Although, I see them less often than I used to. Another indication that things are going well. They find fewer things that are wrong with me and prescribe fewer medications.