polymyalgia rheumatica (pmr) and CLL?

[Heidiypi1]

Just seeing if anyone here has got polymyalgia rheumatica (pmr) with CLL and wondering if CLL or the covid vaccines have anything to do with it? I’m really suffering with this so much pain and stiffness I got this from the stress bought on from my oral surgery on my tongue, amazing what stress can do to you!

[AussieNeil Administrator]

Just one past post showed up in the Related Posts: healthunlocked.com/cllsuppo...

I hope you feel better soon,

Neil

[Suzie42]

My mother in law had PMR and was treated with steroids, prednisilone, are you on them, her pain was kept under control with them and a fentanyl patch

[Lady_Lymington]

Hi Heidi. Indeed yes!! I was diagnosed with CLL Christmas 2019 and joined the Flair trial. Was on I&V arm. Discontinued Ibrutinib due to side effects, but remained on Venetoclax. In Jan 2022 started to get pain and stiffness across my neck, shoulders, hips and hamstrings. Turning over in bed made me cry out in pain. The symptoms became so bad that my husband had to assist me out of bed, toileting and dressing. A trip to the GP and subsequent bloods for inflammatory markers confirmed the diagnosis. I was started on Prednisolone 30 mgs daily.....and within days I was asymptomatic! However trying to reduce the dose has been a nightmare, with flare ups along the way. My weight has gone from 52 kgs to 65 kgs, and I look horribly cushingoid. Thought I was the only one, but guess I am not.

[NaturalWaze in reply to Lady_Lymington]

Wow, so sorry to hear this. Do you think it’s from the CLL, or the Venetoclax? (Or neither?)I hope you are able to successfully keep weaning from Prednisone. A friend of mine did this verrrry slowly with minuscule changes in dose every couple of months and that’s been ok.

[Lady_Lymington in reply to NaturalWaze]

I have no idea Heidi. All I know is that PMR is an auto immune disease. I didn't know it could be caused by stress as well.

[LeoPa in reply to Lady_Lymington]

If it's auto immune a meat only diet could help. I'd try for a month if I was in that much pain. Meat doesn't trigger auto immune reactions. Everything else can.

[NaturalWaze]

Hi Heidi, a friend of mine was diagnosed with PMR shortly after her 2nd Covid vax.. She could barely get out of bed. She ultimately went on Prednisone, which alleviated all the symptoms. Now she is slowly weaning off Prednisone.

[GLB55]

Hello Heidi, PMR has been around for a long long time so it's hard to blame CLL or vaccines, although our minds try to gasp for a logical reason. Since it is an autoimmune disease they don't know what causes it but stress can be a factor. Prednisone is the magic fix for this, PMR usually runs it's course in 2 to 3 years. I had PMR in 2008 to about 2011, wasn't diagnosed with CLL until 2014. I've known others that have had PMR and they also had a 2-3 year run but prednisone manages it very well. Once under control it can be managed with very small doses. I know we don't want to be on prednisone for long periods but the small doses sure beat the alternative of being in pain all the time. I can't remember what dose they started me on, either 20mg or 10mg and over a few months they kept coming down with the doses until I was on just 1mg. It's very manageable, I hope you can get the relief I did with it and get thru the next couple of years pain free.Gary

[200185]

I developed polymyalgia after my second cat scan with iodine. No more iodine for me. Had to go on prednisone for 1 and a half years to calm it down. Am fine now. PTL!!!