Prednisone love/hate support group

Posted by Mike @dadcue, Feb 3 8:18am

For anyone interested in a good source of information, the Prednisone Pharmacist is prolific with making videos on a wide variety of topics about prednisone. I know she also has a vitamin formulation that she promotes. I don't think the vitamin formulation she promotes should distract from the information she shares.

The topic in the following video is one of my interests. I have never tried her vitamins. I just appreciate the information about why it is such a struggle to taper off prednisone.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

bonandrods | @bonandrods | Nov 12 1:17pm

She is fabulous. A wealth of information. She also has many that are PMR specific.

pattiobrien111 | @pattiobrien111 | Nov 13 8:49am

In reply to @pb50 "@dadcue and @johnbishop Hi Mike and John. I am in a point of trepidation and would..." + (show)

@pb50
Dr Kate Gilbert’s book on PMR/GCA is fantastic. Buy and read it. Too much info to get into here re: prednisone but she covers it extensively. Extremely helpful. A PMR survivor, she is clear and free now.
Best.

pb50 | @pb50 | Nov 13 9:31am

Thank you!!!

Mike | @dadcue | Nov 13 10:26am

In reply to @pb50 "Thank you!!!" + (show)

@pb50

Has anyone ever told you that being diagnosed with RA doesn't exclude the possibility of also having PMR?

Wasn't your son diagnosed with reactive arthritis which creates additional possibilities? He got his genes from somewhere. Have you been tested for HLA-B27?
https://www.jrheum.org/content/early/2025/05/23/jrheum.2025-0167
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Being positive for HLA-B27 didn't make it any easier to be treated but it was nice to know about. My rheumatologist actually told me it would be impossible to adequately treat everything.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
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pb50 | @pb50 | Nov 13 11:12am

Indeed my son developed severe reactive arthritis following knee surgery and had to go to a unit at Medical College of Charleston for surgical complications to get diagnosed.. and I have not been tested for that. Thanks for the tip!

Yea - i held a private parade yesterday because my knee was all better after two days of 30mg . today it's not. 🙂 the diffuse inflammation is way better, but the tendon and patella are still painful it seems. And yes, two things can be going on at once 🙂

pb50 | @pb50 | Dec 5 4:58pm

Well guess what?? This disease just
Keeps on giving. The knee pain got a bit better after prednisone and then got much worse suddenly. Turns out I have a torn meniscus and “significant” Chondrocalcinosis. Getting an MRI Sunday morning. If I understand the implications from my rheumy, these crystals can actually damage the meniscus but won’t be sure until MRI results are in whether that is what happened.

Mike | @dadcue | 3 days ago

In reply to @pb50 "Well guess what?? This disease just Keeps on giving. The knee pain got a bit better..." + (show)

@pb50

How do they treat that?

I don't have my original meniscus anymore. Both of my knees have been replaced. My knee replacements hurt now. They say my replaced knee joints hurt because I have heterotophic ossification (HO) in the soft tissues surrounding my fake knees. HO is a condition where there is bone formation in soft tissues where bone isn't supposed to exist. How weird is that?
https://www.ncbi.nlm.nih.gov/books/NBK519029/
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I have gout so I have uric acid crystals in the joint of my big toe. They assured me it is bone formation and not uric acid crystals around my knees. Anything in places where it shouldn't be always seems to hurt when it gets inflamed.

pb50 | @pb50 | 3 days ago

In reply to @dadcue "@pb50 How do they treat that? I don't have my original meniscus anymore. Both of my..." + (show)

@dadcue Rheumy says prednisone improved the pain from chondrocalcinosis. Pain i have now is from torn meniscus.

Assumption is surgery - based on my interpretation of the MRI report, the meniscus is torn, smushed out like a disc gets pushed out, and is frayed on the edges. Going from standing to sitting is excruciating. So at the very least he will trim it.
That is assuming he will do it with a nerve block. I am working hard to preserve as much gray matter as I can. The anesthesia i had when I had lung surgery, which was protracted while they waited on pathologist, had an unquestionable impact on certain types of memory. So i am pretty rigid now about general anesthesia. Fortunately I am not fearful of procedures and have high pain threshold.
My question is whether i am in a rinse and repeat situation. If I am getting crystal formation and the edges of those tears soft tissue like meniscus, What will that mean?
Sadly I can’t ask him questions until January 5th.

Mike | @dadcue | 3 days ago

In reply to @pb50 "@dadcue Rheumy says prednisone improved the pain from chondrocalcinosis. Pain i have now is from torn..." + (show)

@pb50

They might remove your meniscus and put in an artificial one. They simply removed my meniscus when I had a knee injury a long time ago. They said I wouldn't need my meniscus. At the time, that was what they did because they didn't have any replacement parts.

Within 10 years of my meniscectomy, they said I needed a whole new knee. I was only 30 years old at the time so I had to wait until I was 60 to get new knees.

A spinal block is the way to go for knee surgery --- I was talking to the anesthesiologist the whole time while the surgeon replaced my knees.

I kept asking the anesthesiologist why he was infusing so much hydrocortisone. He said it helps with recovery from knee replacement surgery but in my case it was so I wouldn't have an adrenal crisis.

Post-operatively, I remember a really nice endocrinologist who checked on me every hour for about 8 hours. She was nicer than the surgeon but she wasn't part of the surgical team. She was the medical management team but she disappeared when I didn't have an adrenal crisis.