Pain - at back of knees?

Posted by anncoco57 @anncoco57, Oct 20 11:16pm

I’m on the withdrawal process for steroids and now fown from 15mg to 7.5. I am still experiencing pain in shoulders quite bad but now I’m getting pain at the back of my knees ( this is a first) does anyone else have this issue

I’m weaning myself off slowly because the side affects are worse than the pain

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

John, Volunteer Mentor | @johnbishop | Oct 21 7:29am

Hi @anncoco57, I had pain in the feet and legs including the back of my knees for my first PMR flare up but can't remember if I had pain there the second time around with PMR. You mentioned you started at 15mg and are now at 7.5mg. I think in an earlier post or discussion you mentioned your PMR treatment started sometime in July 2024. I know each of us are different when it comes to tapering but I was thinking you might not be tapering slow enough. Took me 3-1/2 years to taper off the first time and 1-1/2 years the second time with PMR.

You will notice that we added a little more to your discussion title to make it easier for members to know what your question is and hopefully share their experience. @dadcue posted a couple of links that you might find helpful in another discussion here:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
You might also want to take a look at the following discussion:
-- Any Tips For Tapering Off Prednisone?
https://connect.mayoclinic.org/discussion/any-tips-for-tapering-off-prednisone/
Do you keep a daily log of your prednisone dosage and your level of pain when you get up in the mornings?

anncoco57 | @anncoco57 | Oct 21 11:05am

In reply to @johnbishop "Hi @anncoco57, I had pain in the feet and legs including the back of my knees..." + (show)

Thank you . I did wonder if I am going into quickly . Will go back up a bit

DadCue | @dadcue | Oct 21 11:28am

In reply to @anncoco57 "Thank you . I did wonder if I am going into quickly . Will go back..." + (show)

The following video is my favorite.

--------------------
There are some very slow tapering schemes that don't work very well. There is a point when people take prednisone longer than needed for PMR. There are people who push the notion that the "average duration" of PMR is 5.9 years. There was a study with a small sample size that suggested PMR may last longer than 1-2 years as was originally believed.

However, a large UK study found that the median duration of continuous corticosteroid treatment for polymyalgia rheumatica (PMR) is 15.8 months, but about 25% of patients receive more than 4 years of treatment.
https://pubmed.ncbi.nlm.nih.gov/30297332/

glinda47 | @glinda47 | Oct 22 10:04am

Ann, after a few months with very sore legs and shoulders, I developed fluid-filled Baker's Cysts behind my knees. Very very sore, all the way around to the inside of the knee. They also caused my kneecaps to swell and the veins to become prominent. Someone on one of my PMR sites said that the fluid from the cysts pushing up on my kneecaps. For me, they come and go. You can have them aspirated. I went to an orthopedic doc to do that, rheums and other do too. But the day I went, they had re-absorbed and there was no pain. He said that happens all the time. If you do have them aspirated, they can return. I'm assuming this is what your issue is, but it may be something else. Lots of info online about it. Wishing you the best. I'm also assuming that they accompany PMR for some of us as just another form of inflammation. Wishing you the best.

jenbillig | @jenbillig | Oct 22 10:16am

What side effects? From the prednisone? Just curious because I have been on 5mg for a year and no side effects.

Teri | @tsc | Oct 22 12:42pm

Hi @anncoco57, before diagnosis and treatment, I had incredible pain and stiffness throughout my body from the neck down. The backs of my knees were very painful and stiff. By the time I was diagnosed, after a year, I had GCA. My pain went away with prednisone. I was initially prescribed 40 mg.

anncoco57 | @anncoco57 | Oct 22 12:49pm

In reply to @jenbillig "What side effects? From the prednisone? Just curious because I have been on 5mg for a..." + (show)

Dreadful moods, weight gain, unable to sleep at night , feeling spaced out and my super levels are rising

jenbillig | @jenbillig | Oct 22 2:03pm

That is pretty bad. Not having any of these except when I was on 60 mg.
Hope you will feel better once off it.

anncoco57 | @anncoco57 | Oct 22 2:08pm

In reply to @jenbillig "That is pretty bad. Not having any of these except when I was on 60 mg...." + (show)

Thank you

It’s a roller coaster ride

jenbillig | @jenbillig | Oct 22 2:55pm

It is and I have come to accept that I will have to manage this until I die. Since I am 86 I am not exactly looking at all that long 😂 will also try to change my diet and eliminate sugar although…tonight I will have a vodka tonic!