Psoriatic arthritis and Pembro (Keytruda)

Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

I know this is an older post, I hope you are doing well.  I think IA or PsA are under reported side effects of Keytruda and other immunotherapies.  I was only able to remain on Keytruda for less than 3 months before excruciating neck pain and then all joints, and muscle weakness.  I had to go on high dose prednisone for two months then it took another 6 months to wean off.   Now three years later I have psoriasis in my ears it is like an itch you cannot scratch but luckily it comes and goes, and my knees are weak and painful and the prednisone increased my weight A LOT, and I still have not been able to lose weight, I am likely the fattest stage 4 cancer patient in history LOL.   So, yes I believe join pain and muscle pain are caused by Keytruda but for many the alternative is worse.  My story is not all bad though, my PET scan back in Nov '18 came back NED, and I am off all treatment and just need regular scans for observation.