Between 2018 and 2019 I have had three malignant melanomas removed, one of which involved removing a section of my left ear, Subsequent scans have given me the all clear but I am still being monitored. From June 2019 I began a one year course of Pembrolizumab, which for the first six months was uneventful. Since Dec/Jan time I have developed side effects such as aches and pains across my neck and shoulders and a painful right wrist. I am normally quite active, going for 3 mile jogging 2 or 3 times a week plus some gym workouts. The side effects have now left me fatigued and unable to continue my normal exercise and the shoulder pains become more evident at night-time and sleep getting more and more difficult.
After initial referral an osteopath, which did not resolve the problem, I was put on a 4 week course of steroids (10mg Prednisolone) which immediately resolved all of the side effects. Unfortunately, 2 weeks after finishing the course, the side effects returned, not always in the same area. I was then put back on steroids and again immediate relief and then the same result on completion of the course. This has been repeated 4 times now with the same results. My consultant has now prescribed Naproxen 250mg (a non-steroidal medication) ,1 tablet 2 times a day. These have no effect at all.
I am being referred to a Rheumatologist to see if they can find the problem/treatment but since I think the symptoms are Pembrolizumab side effect related, I'm not sure this will resolve anything.
When I read on these forums the really serious problems so many people are suffering, I'm a little hesitant about posting my relatively minor ailments. What I was hoping was to see if anyone else had gone through similar side effects and whether they could be anticipated to be permanent. If so what treatment, if any, was considered to be the most beneficial. I am also aware there is the possibility of other side effects developing but I'm trying to be optimistic that they will not.
Hi and a very warm welcome to the online community
I'm sorry to read about the side effects you're experiencing since taking Pembrolizumab. It must be very difficult for you with none of the treatments to alleviate your aches and pains lasting for any length of time.
I don't have any personal experience with Pembrolizumab but I noticed that your post hadn't had any replies yet. If you type 'Pembrolizumab side effects' into the search bar at the top of the page, you'll see that it brings up lots of previous posts. You could have a read through those and reply to any of the more recent ones if you think the poster might be able to help you further.
When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Do come back and let us know how it goes with the Rheumatologist.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi
When you say you haven't had much success using the search facility to find previous posts from people with side effects, do you mean you can't find the posts or you can't find posts with people having the same side effects?
"Never regret a day in your life, good days give you happiness, bad days give you experience"
