Smoked Joints?

Hi paul

i am an expert on this one!!! My doctors said my autoimmune response was really rare but maybe it was just what you have and extreme. 

After 6 months on pembro with amazing response I started getting very stiff like arthritis. Especially in the mornings. I could not even breathe without pain. I could not sit up in bed for a couple of hours. Could not turn from side to side. Couldnt turn my head. As the day progressed the symptoms would ease. I was put on 25 mg prednisone a day and that helped but after 6 months the side effects of that were bad too. By now I had stopped pembro (in June) I think I made it to 17 doses  

what my doctors did was send me to a rheumatologist who scanned me very thoroughly (as he was doing a paper on me, but I paid of course)

after deciding from the scans that the proper diagnosis was ankylospondylitis, he put me on a cocktail of drugs including plaquenil, ketaprofen and another anti inflammatory and we gradually ( over 6 months) reduced the prednisone. It helped a bit but gradually the disease  overtook the treatment 

He was not even admitting at this point that this was a drug induced condition, so I emailed dr Weber in the USA to ask if infliximab might be a good solution. ( thanks to Celeste I had heard of it) I got a return email to say that in the circumstances it would be an appropriate treatment. 

So I bugged my onc and the rheum to let me have it. I started in April this year and even after the first treatment I felt much better. I had all 4 of the basic doses but only because the protocol here (Australia) will only let you continue with maintenance if you have done all 4 and my doctors wanted the option

after the initial good response I didn't notice it getting any better over the next three infliximab infusions

so my inflammation is just about gone, but then after 6 months treatment with infliximab the only tumour left in my lung started to grow again. As a precaution we did away with the infliximab maintenance, even though it had not been proven that this may be a contributing factor to the disease progression

and we resected the tumour 10 days ago and I am now cancer free!!

sorry for the long post, but to answer your question. This can continue for a very long time after you stop pembro and if I had my time again I would do a quick zap of infliximab since I just had one small tumour left. It probably depends on your level of pain, and I could not function so that was an easy decision for me.

anne-Louise 

Hi paul

i am an expert on this one!!! My doctors said my autoimmune response was really rare but maybe it was just what you have and extreme. 

After 6 months on pembro with amazing response I started getting very stiff like arthritis. Especially in the mornings. I could not even breathe without pain. I could not sit up in bed for a couple of hours. Could not turn from side to side. Couldnt turn my head. As the day progressed the symptoms would ease. I was put on 25 mg prednisone a day and that helped but after 6 months the side effects of that were bad too. By now I had stopped pembro (in June) I think I made it to 17 doses  

what my doctors did was send me to a rheumatologist who scanned me very thoroughly (as he was doing a paper on me, but I paid of course)

after deciding from the scans that the proper diagnosis was ankylospondylitis, he put me on a cocktail of drugs including plaquenil, ketaprofen and another anti inflammatory and we gradually ( over 6 months) reduced the prednisone. It helped a bit but gradually the disease  overtook the treatment 

He was not even admitting at this point that this was a drug induced condition, so I emailed dr Weber in the USA to ask if infliximab might be a good solution. ( thanks to Celeste I had heard of it) I got a return email to say that in the circumstances it would be an appropriate treatment. 

So I bugged my onc and the rheum to let me have it. I started in April this year and even after the first treatment I felt much better. I had all 4 of the basic doses but only because the protocol here (Australia) will only let you continue with maintenance if you have done all 4 and my doctors wanted the option

after the initial good response I didn't notice it getting any better over the next three infliximab infusions

so my inflammation is just about gone, but then after 6 months treatment with infliximab the only tumour left in my lung started to grow again. As a precaution we did away with the infliximab maintenance, even though it had not been proven that this may be a contributing factor to the disease progression

and we resected the tumour 10 days ago and I am now cancer free!!

sorry for the long post, but to answer your question. This can continue for a very long time after you stop pembro and if I had my time again I would do a quick zap of infliximab since I just had one small tumour left. It probably depends on your level of pain, and I could not function so that was an easy decision for me.

anne-Louise 

Hi paul

i am an expert on this one!!! My doctors said my autoimmune response was really rare but maybe it was just what you have and extreme. 

After 6 months on pembro with amazing response I started getting very stiff like arthritis. Especially in the mornings. I could not even breathe without pain. I could not sit up in bed for a couple of hours. Could not turn from side to side. Couldnt turn my head. As the day progressed the symptoms would ease. I was put on 25 mg prednisone a day and that helped but after 6 months the side effects of that were bad too. By now I had stopped pembro (in June) I think I made it to 17 doses  

what my doctors did was send me to a rheumatologist who scanned me very thoroughly (as he was doing a paper on me, but I paid of course)

after deciding from the scans that the proper diagnosis was ankylospondylitis, he put me on a cocktail of drugs including plaquenil, ketaprofen and another anti inflammatory and we gradually ( over 6 months) reduced the prednisone. It helped a bit but gradually the disease  overtook the treatment 

He was not even admitting at this point that this was a drug induced condition, so I emailed dr Weber in the USA to ask if infliximab might be a good solution. ( thanks to Celeste I had heard of it) I got a return email to say that in the circumstances it would be an appropriate treatment. 

So I bugged my onc and the rheum to let me have it. I started in April this year and even after the first treatment I felt much better. I had all 4 of the basic doses but only because the protocol here (Australia) will only let you continue with maintenance if you have done all 4 and my doctors wanted the option

after the initial good response I didn't notice it getting any better over the next three infliximab infusions

so my inflammation is just about gone, but then after 6 months treatment with infliximab the only tumour left in my lung started to grow again. As a precaution we did away with the infliximab maintenance, even though it had not been proven that this may be a contributing factor to the disease progression

and we resected the tumour 10 days ago and I am now cancer free!!

sorry for the long post, but to answer your question. This can continue for a very long time after you stop pembro and if I had my time again I would do a quick zap of infliximab since I just had one small tumour left. It probably depends on your level of pain, and I could not function so that was an easy decision for me.

anne-Louise 

Hi Paul…. Yes, I've had the same problems. However, mine took far longer to develop. I was on Pembro for 29 rounds, then had to stop due to increasing muscle/joint pain and pancreatitis. The pembro following the Yervoy increased the trouble with my thyroid as well. Increasing a dose of synthroid is an "easy" decision, but dealing with the joint pain and inflammation is a little harder to do. Like you, I am hoping that it is a temporary response, and that my immune system will eventually balance itself out once again, yet still maintain control of the melanoma. The joint pain and muscle aches began in my neck and legs, eventually making it's way into my shoulder, elbow, knee, and fingers…. all on my right side only. It started around May sometime. I've been tested for RA… it's not that. I've been tested for Lupus, which although showing positive, I was told that it is either very minor, or may even be a "false positive" that my rheumatologist was not terribly concerned with. Soooooo… at this point, I am on a combo of Naproxen and Suflasalazine to control swelling. My last dose of Pembro was July 5 and the joints are still swelling…. but with the meds, I am able to function at about 85-90% of my normal level. Docs are keeping tabs on anemia (which can happen with inflammation as well as gastro issues caused by the NSAID) and organ function. It's one thing to have joint inflammation, but when the heart and/or other organs get attacked by your own immune system, things need to be slowed down! 

Edema massage, heat packs, stretching, and mild to moderate exercise all seem to help loosen things up. It's been tough to find the "right amount" of movement though, versus creating more of a problem with overuse of the joints. But hey… California is set to become a "recreational use" state, and I have family in Colorado… so if all goes to hell in a handbasket and things get worse… I like brownies! LOL!  ; )  Kidding!

Hi Paul…. Yes, I've had the same problems. However, mine took far longer to develop. I was on Pembro for 29 rounds, then had to stop due to increasing muscle/joint pain and pancreatitis. The pembro following the Yervoy increased the trouble with my thyroid as well. Increasing a dose of synthroid is an "easy" decision, but dealing with the joint pain and inflammation is a little harder to do. Like you, I am hoping that it is a temporary response, and that my immune system will eventually balance itself out once again, yet still maintain control of the melanoma. The joint pain and muscle aches began in my neck and legs, eventually making it's way into my shoulder, elbow, knee, and fingers…. all on my right side only. It started around May sometime. I've been tested for RA… it's not that. I've been tested for Lupus, which although showing positive, I was told that it is either very minor, or may even be a "false positive" that my rheumatologist was not terribly concerned with. Soooooo… at this point, I am on a combo of Naproxen and Suflasalazine to control swelling. My last dose of Pembro was July 5 and the joints are still swelling…. but with the meds, I am able to function at about 85-90% of my normal level. Docs are keeping tabs on anemia (which can happen with inflammation as well as gastro issues caused by the NSAID) and organ function. It's one thing to have joint inflammation, but when the heart and/or other organs get attacked by your own immune system, things need to be slowed down! 

Edema massage, heat packs, stretching, and mild to moderate exercise all seem to help loosen things up. It's been tough to find the "right amount" of movement though, versus creating more of a problem with overuse of the joints. But hey… California is set to become a "recreational use" state, and I have family in Colorado… so if all goes to hell in a handbasket and things get worse… I like brownies! LOL!  ; )  Kidding!

Hi Paul…. Yes, I've had the same problems. However, mine took far longer to develop. I was on Pembro for 29 rounds, then had to stop due to increasing muscle/joint pain and pancreatitis. The pembro following the Yervoy increased the trouble with my thyroid as well. Increasing a dose of synthroid is an "easy" decision, but dealing with the joint pain and inflammation is a little harder to do. Like you, I am hoping that it is a temporary response, and that my immune system will eventually balance itself out once again, yet still maintain control of the melanoma. The joint pain and muscle aches began in my neck and legs, eventually making it's way into my shoulder, elbow, knee, and fingers…. all on my right side only. It started around May sometime. I've been tested for RA… it's not that. I've been tested for Lupus, which although showing positive, I was told that it is either very minor, or may even be a "false positive" that my rheumatologist was not terribly concerned with. Soooooo… at this point, I am on a combo of Naproxen and Suflasalazine to control swelling. My last dose of Pembro was July 5 and the joints are still swelling…. but with the meds, I am able to function at about 85-90% of my normal level. Docs are keeping tabs on anemia (which can happen with inflammation as well as gastro issues caused by the NSAID) and organ function. It's one thing to have joint inflammation, but when the heart and/or other organs get attacked by your own immune system, things need to be slowed down! 

Edema massage, heat packs, stretching, and mild to moderate exercise all seem to help loosen things up. It's been tough to find the "right amount" of movement though, versus creating more of a problem with overuse of the joints. But hey… California is set to become a "recreational use" state, and I have family in Colorado… so if all goes to hell in a handbasket and things get worse… I like brownies! LOL!  ; )  Kidding!

Hi Paul,

This might be of interest

 http://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf

Did a lot of reading when I was on a pembro v placebo trial and thought I had synovitis problems – but turned out it was placebo and probs were due to infection in an old surgical scar – but still this might be of interest and the supression route seemed to work with the treatment.

Good luck

Deb

Hi Paul,

This might be of interest

 http://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf

Did a lot of reading when I was on a pembro v placebo trial and thought I had synovitis problems – but turned out it was placebo and probs were due to infection in an old surgical scar – but still this might be of interest and the supression route seemed to work with the treatment.

Good luck

Deb

Hi Paul,

This might be of interest

 http://rheumatologywinterclinicalsymposium.com/2017/wp-content/uploads/2016/02/RWCS-ANTIPD1-IL6arthritis-1.pdf

Did a lot of reading when I was on a pembro v placebo trial and thought I had synovitis problems – but turned out it was placebo and probs were due to infection in an old surgical scar – but still this might be of interest and the supression route seemed to work with the treatment.

Good luck

Deb