1. < Polymyalgia Rheumatica (PMR)

PMR due to immunotherapy for cancer.

Posted by elizabethvalerie @elizabethvalerie, Aug 27 4:44pm

I have cancer and receive immunotherapy. Now I have PMR due to an overactive immune system. I had a couple of treatments of the immunotherapy held because I was taking prednisone. Once I got down to 10mg a day I was started back on the immunotherapy. The oncologist is really wanting me to keep tapering. Has anyone else been in this situation? Will I just be able to keep tapering and then the PMR goes away? Has anyone had to stop their immunotherapy?

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tuckerp | @tuckerp | Aug 27 5:05pm

I learned one of my early lessons on steroids from my wife. She has GBM. Brain swelling is just not an option. They gave her Dexamethasone for the surgery and through radiation and chemo. Then they needed her to taper off to do immunotherapy treatments. They told us as close to off as she could get. I quickly found out how difficult that might be. We could only get down to 1mg which is about the equivalent of 5.5 prednisone. Otherwise your defeating the purpose of immuno drugs. In our case avastin and keytruda. I think we did 3 infusions and then stopped due to an infection. Was the infection from the steroid use or the immuno drugs or something else. Not sure. The immuno drugs have the risk of increasing infections. This can be made much more serious by steroids. The infection was the game changer in her cancer journey. We never fully recovered. I ended up with PMR she did not have it . I cant imagine your having to deal with cancer and the PMR. I dont have an answer to give you. But in my wifes case, she was not a candidate for any more immuno treatments.

REPLY
1 reply
elizabethvalerie | @elizabethvalerie | Aug 27 5:46pm
In reply to @tuckerp "I learned one of my early lessons on steroids from my wife. She has GBM. Brain..." + (show)
@tuckerp

I learned one of my early lessons on steroids from my wife. She has GBM. Brain swelling is just not an option. They gave her Dexamethasone for the surgery and through radiation and chemo. Then they needed her to taper off to do immunotherapy treatments. They told us as close to off as she could get. I quickly found out how difficult that might be. We could only get down to 1mg which is about the equivalent of 5.5 prednisone. Otherwise your defeating the purpose of immuno drugs. In our case avastin and keytruda. I think we did 3 infusions and then stopped due to an infection. Was the infection from the steroid use or the immuno drugs or something else. Not sure. The immuno drugs have the risk of increasing infections. This can be made much more serious by steroids. The infection was the game changer in her cancer journey. We never fully recovered. I ended up with PMR she did not have it . I cant imagine your having to deal with cancer and the PMR. I dont have an answer to give you. But in my wifes case, she was not a candidate for any more immuno treatments.

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Tuckerp, Thanks for your quick reply and sharing your wife's experience. I couldn't tell from your note if she is still alive, but it seems like she went through the ringer. When I hear other peoples' stories it make me feel lucky.
As to my experience with PMR I feel terrible every morning, but by 11:00am much better and by evening I feel normal. I just need to suck it up and deal with the mornings as best I can so that I can stay on the immunotherapy.
Your story and mine are examples that every drug has side effects and it's all about balancing the risks and benefits and then being brave when a disappointment comes along.

REPLY
1 reply
tuckerp | @tuckerp | Aug 27 6:23pm
In reply to @elizabethvalerie "Tuckerp, Thanks for your quick reply and sharing your wife's experience. I couldn't tell from your..." + (show)
@elizabethvalerie

Tuckerp, Thanks for your quick reply and sharing your wife's experience. I couldn't tell from your note if she is still alive, but it seems like she went through the ringer. When I hear other peoples' stories it make me feel lucky.
As to my experience with PMR I feel terrible every morning, but by 11:00am much better and by evening I feel normal. I just need to suck it up and deal with the mornings as best I can so that I can stay on the immunotherapy.
Your story and mine are examples that every drug has side effects and it's all about balancing the risks and benefits and then being brave when a disappointment comes along.

Jump to this post

Yes your right. Any drug or even supplements have an effect. We have become a society of treating the symptoms not the cause. They gave my wife 6 months. That was 4 years ago. She is on hospice. We deal with one day at a time.

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