PMR brought on by Immunotherrapy

[Malph]

Hi all. My first post.

I just wondered if there was anyone in the community who is or has suffered with PMR as a side effect from Immunotherapy cancer treatment and their experience.

I was diagnosed with cancer a year ago and have been receiving the aforementioned treatment. Immunotherapy is all about programming your immune system to fight the cancer and has done that well but the immune system also has a tendancy to attack other organs and areas of the body which brings on the side effects such as colitis, pneumanitis, other itits's (inflammation) and more recently PMR. The PMR is the toughest to come to terms with and I've been suffering for about 6 months now. I'm on 17.5mg Pred which I think is a lot looking at the posts on here.

Even though I speak to my oncologist and GP, the former is a bit vague in terms of outlook and my GP can't really comment on the immunotherapy induced PMR.

Any response would be very much appreciated

[PMRpro Ambassador]

Hi and welcome.

The illness of cancer itself is enough to trigger the immune system - and PMR doesn't always appear immediately. But anything that is poking at the immune system has the potential to trigger autoimmune disease when the history of a stressed immune system is combined with the genetic predilection to develop autoimmunity. There is no single cause - they are many and varied. Immunotherapy is still relative new so there won't be much about its downsides in the literature yet.

[DorsetLady PMRGCAuk volunteer]

Have replied to your chat - but hopefully you will get replies on here as well from others in a similar situation.

Best wishes…🌸

[soreoldbiker]

sciencedirect.com/science/a...

The link above is to a paper that may be of interest to you. If you use Google Scholar, you will also find other similar papers of possible relevance to your condition. Best wishes in dealing with an obviously challenging and complicated situation.

[Hidden]

At 6 months I was taking 15mgs, having started on 20mgs; so yours is not too far adrift of that depending on what dose and when you started. The 'official' reduction schedule is too fast for most( See loads of posts!) and that what is important is that you reduce by an ammount that controls your symptoms; this is different for each individual. Your immune system will be particularly frisky due to the immunotherapy.

[Malph in reply to Hidden]

I can't thank you all enough. I know from my last year fighting cancer that every bit of support is so valuable and helpful. PMR acceptance is what I'vereally been struggling with but that means I've been looking at things upside down, desperate to ween down on Pred regardless of how I'm feeling. I now appreciate that's silly and more important to find a level and accept the long term nature and don't fear the steroids.

Just on a slightly different subject. Has anyone found those 'feet on' blood circulation devices that pulse - like TENS machines - to be helpful?

[DorsetLady PMRGCAuk volunteer in reply to Malph]

Do you mean like Revitive? Has been mentioned before but not sure good they are -

revitive.com/?gclsrc=aw.ds&...

this was posted about a year ago

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Malph]

I see no reason why they should be helpful - they work to boost blood flow, both arterial and venus, which isn't usually a problem in PMR.

This is a good discussion of what they do - although the study is sponsored by the manufacturer so I doubt we will hear of the results unless they support the use of the things to improve sales!!!

pmc.ncbi.nlm.nih.gov/articl...

And this is an assessment by a non-interested party

croydonfoot.com/do-circulat...

which recommend going for a walk - which works your whole body with lasting effect unlike the foot massager!

Another article says the author found the Medic version u seful - but it doubles as a TENS machine and they don't work to relieve PMR pain. Nothing does except the right dose of pred.

[S4ndy]

Sorry to hear about your Cancer and joining the PMR club. On the Revitive machine I had a friend /client who used one daily. She was in heart failure and she swore the machine helped with venous flow. She was an ex nurse so did have anatomical knowledge. However, seeing her every week for a year to give her massage therapy, I didn't see any swelling improvement. However what I did notice was that unlike some of my other clients with heart failure, she didn't have leg ulcers. Obviously this was just one observation on my part. I do agree that there is probably more benefit to a short walk every day.

As you are being treated for cancer do you have access to a consultant Rheumatologist? When my husband was diagnosed there was one on his multi-disciplinary team. He saw him for advice on his back pain and gout. If there is, perhaps you could chat to him regarding the prednisolone. However, from what you say your dose is not horrendously high and I would be in no hurry to lower it as others on here have said.

Welcome to the club no one wants to join! Hope your cancer treatment is going well.

[Hidden]

I think S4andy makes a good point about you having a Rheumato opinion, e.g. complexity around drug interactions, the most advisable PMR meds to suit your particular situation.