Long-term / side effects of steroids?

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Hi Maria,

I was on Prednisone (ranging from 10-40mg/day) for one year and 3 months when I was 30-31 (20 years ago).  This was for an unrelated diagnosis (Meniere's disease).  Side effects while I was on Prednisone were:  A round/fat face (Cushings syndrome), insomnia, muscle weakness (hard to climb stairs), high agitation/aggression, big drop in IQ points (due to lack of sleep I presume).  After I stopped prednisone, all of those symptoms went away.  BUT a new one started:  Extreme joint pain.  Every single joint in my body would hurt when I woke up in the morning.  It would steadily improve during the day but if I was still for too long, it would hurt to move again.  So every morning was agony.  This pain gradually improved until the one-year mark when I no longer had joint pain.  Prior to being on Prednisone, and while taking it, I jogged every morning.  After stopping prednisone I stopped jogging as it was just too painful.  But here I am, 20 years later, with absolutely no joint pain so it was not long-lived.  As far as other long-term effects I am not aware of any.  It does suppress the immune system which can contribute to cancer (ha!) but I have no way of knowing if that is true in my case and since we all have cancer now anyways it's likely a moot point.

I am not aware of anything specific to be done to counter-balance the effects of a steroid.  Hopefully someone else will have some ideas.

Cheers!

Maggie

Hi Maria,

I was on Prednisone (ranging from 10-40mg/day) for one year and 3 months when I was 30-31 (20 years ago).  This was for an unrelated diagnosis (Meniere's disease).  Side effects while I was on Prednisone were:  A round/fat face (Cushings syndrome), insomnia, muscle weakness (hard to climb stairs), high agitation/aggression, big drop in IQ points (due to lack of sleep I presume).  After I stopped prednisone, all of those symptoms went away.  BUT a new one started:  Extreme joint pain.  Every single joint in my body would hurt when I woke up in the morning.  It would steadily improve during the day but if I was still for too long, it would hurt to move again.  So every morning was agony.  This pain gradually improved until the one-year mark when I no longer had joint pain.  Prior to being on Prednisone, and while taking it, I jogged every morning.  After stopping prednisone I stopped jogging as it was just too painful.  But here I am, 20 years later, with absolutely no joint pain so it was not long-lived.  As far as other long-term effects I am not aware of any.  It does suppress the immune system which can contribute to cancer (ha!) but I have no way of knowing if that is true in my case and since we all have cancer now anyways it's likely a moot point.

I am not aware of anything specific to be done to counter-balance the effects of a steroid.  Hopefully someone else will have some ideas.

Cheers!

Maggie

Hi Maria,

I was on Prednisone (ranging from 10-40mg/day) for one year and 3 months when I was 30-31 (20 years ago).  This was for an unrelated diagnosis (Meniere's disease).  Side effects while I was on Prednisone were:  A round/fat face (Cushings syndrome), insomnia, muscle weakness (hard to climb stairs), high agitation/aggression, big drop in IQ points (due to lack of sleep I presume).  After I stopped prednisone, all of those symptoms went away.  BUT a new one started:  Extreme joint pain.  Every single joint in my body would hurt when I woke up in the morning.  It would steadily improve during the day but if I was still for too long, it would hurt to move again.  So every morning was agony.  This pain gradually improved until the one-year mark when I no longer had joint pain.  Prior to being on Prednisone, and while taking it, I jogged every morning.  After stopping prednisone I stopped jogging as it was just too painful.  But here I am, 20 years later, with absolutely no joint pain so it was not long-lived.  As far as other long-term effects I am not aware of any.  It does suppress the immune system which can contribute to cancer (ha!) but I have no way of knowing if that is true in my case and since we all have cancer now anyways it's likely a moot point.

I am not aware of anything specific to be done to counter-balance the effects of a steroid.  Hopefully someone else will have some ideas.

Cheers!

Maggie