Keytruda for melanoma. Anyone experiencing extreme stiffness?

@jaxthecat Welcome to Mayo Clinic Connect. I’m sorry to hear you’ve been experiencing these side effects. I’ve also been on Keytruda for metastatic melanoma and have encountered some adverse reactions to various extents although not this particular one. There are potentially quite a few as listed here, so to encounter one, two or more is regrettably not unusual: https://www.mayoclinic.org/drugs-supplements/pembrolizumab-intravenous-route/description/drg-20122552. In my case, they’ve been tempered by the fact that the immunotherapy has been successful.

In most cases, the adverse effects tend to subside but during a flare they can be quite troublesome. It sounds like you’re taking the proper steps to treat, among them using heat or cold packs, gentle stretching, and over-the-counter pain relievers like acetaminophen or ibuprofen. If these become ineffective or your symptoms worsen, talk to your provider who may consider stronger meds or corticosteroids.

Can you circle back in a few weeks to let me know how you’re doing?

I'm taking a drug in the same class for basal cell carcinoma and have bouts of stiffness, also in my hips and legs. They come and go as do muscle cramps and spasms. Some spasms are quite painful and disruptive to sleep.

What's helping me:
Massages, self massage with vibrator
Exercise - there's a 'sweet spot'
Electrolyte supplements (sodium, chloride, magnesium, potassium, calcium) TALK TO YOUR DOCTOR FIRST
Tizanidine 4mg 3x/day
Cold (freezing bedroom at night seems to help sleep)
Stretching and changing positions frequently

Good luck, I hope your symptoms and melanoma improve! ❣️

Intersting, I am scheduled to begin my third phase of this drug tomorrow. I will be informing my doctor that I am experiencing discomfort, beginning five days ago in my hip. Heat and over the counter pain killers help, but it is still present.

Very important to mention to your doctor. Let us know what they say. I did not want to take Prednisone, but I was prescribed 5 days of it and it made a world of difference!

@jaxthecat
The oncologist suggested that, since my thyroid was wiped out by the keytruda, that the hip and knee stiffness were related to the problem. I am now taking 150 mg(?) of levothyroxine..

great info here. Wednesday, My oncologist suggested physical therapy. Keytruda is working, positive news.

I would love to avoid any drugs. I am using over the counter meds at this time, but there is a limit to how much I want to depend on them. ,

@grammato3
Met with an MD Monday who diagnosed my soreness and pain in between my hip and knee as a problem with my IT Band.

He suggested stretching, PT, advil, tylenol, heat and ice and provided me with a referral for a steroid injection in my hip, which is scheduled for three weeks from now. I was unable to get him to provide me with any medicine that might resolve the pain and stiffness. I cannot take tylenol, other than in small doses and advil is a concern for its impact on my liver.

A friend who has had problems with his IT suggested that a 'hand' roller applied to my IT band might loosen it up. I bought one yesterday and used it . Also stretched using IT Band stretches I found on the internet.

I woke this morning without severe pain. Yay.

I have come to accept that Keytruda seeks out weaknesses in my body.

@michael51: yes, muscle soreness/inflammation can be brought about by Keytruda. Like all potential adverse effects, it’s commendable you brought this to your provider’s attention.

Physical therapy can be very effective in dealing with the discomfort. I’ve not only experienced some AEs associated witj Keytruda but also have avascular necrosis of my hip following a fracture with pinning in 2018. I’ve needed to delay surgery for a total hip replacement and am currently undergoing PT myself. Like you, I’ve found it to be very beneficial.

I’d like to hear more about this band and particular stretches you do.

@michael51: I’m circling back to inquire about your pain. Has the IT band provided continued relief?

Last week doc gave me a prescription for prednisone. I have had great relief from that medication. thank you for asking.

@michael51 how much prednisone. My oncologist wont give more than 10 mg because keytruda does not get along with steroids