Iipilimumab irAE – endocrynopathy management

Hi Mikers,

Similar IRAE profile for Keytruda- This is the management tool….

https://www.keytruda.com/static/pdf/adverse-reaction-management-tool.pdf

which gives advice for how this is handled with this drug.. would think the protocols would be similar for both drugs.

This is a link to a scientific paper that discusses ipi and pituitary inflammation

http://www.ncbi.nlm.nih.gov/pubmed/25078147   sorry not personal experience but might be worth letting your doc see…

All the best

Deb

Hi Mikers,

Similar IRAE profile for Keytruda- This is the management tool….

https://www.keytruda.com/static/pdf/adverse-reaction-management-tool.pdf

which gives advice for how this is handled with this drug.. would think the protocols would be similar for both drugs.

This is a link to a scientific paper that discusses ipi and pituitary inflammation

http://www.ncbi.nlm.nih.gov/pubmed/25078147   sorry not personal experience but might be worth letting your doc see…

All the best

Deb

Hi Mikers,

Similar IRAE profile for Keytruda- This is the management tool….

https://www.keytruda.com/static/pdf/adverse-reaction-management-tool.pdf

which gives advice for how this is handled with this drug.. would think the protocols would be similar for both drugs.

This is a link to a scientific paper that discusses ipi and pituitary inflammation

http://www.ncbi.nlm.nih.gov/pubmed/25078147   sorry not personal experience but might be worth letting your doc see…

All the best

Deb

I am in the UK.

I was treated with 3mg/kg Ipi – four infusions at three week intervals. In the UK, the standard treatment does not include maintenence doses.

I developed hypophysitis (inflamation of the pituitary gland) after my fourth infusion. As it was my last infusion, it did not affect my treatment with Ipi.

I became very unwell (headaches, increasing fatigue, no appetite, swollen ankles, poor balance) and was diagnosed through a blood test that measured hormone levels. I also had an MRI but that was later. No mention was made of a lumbar puncture and I cannot see that it would have shown anything. Antibiotics only work for bacteria infections. Hypophystis triggered by Ipi is more like an autoimmune condition.

I was referred to an endocrinologist by my melanoma specialist.

I have zero anterior pituitary gland function and have been that way for over a year now.

I was never put on high dose steroids to control the inflamation. To be honest, I think the damage had been done by the time I was diagnosed so high dose steroids would have just made matters worse. I was put on close to replacement levels of the missing hormones.

I was put on 10mg/day prednisolone and 75 mcg/day levothryroxine. As I am female, I did not need any tetesterone replacement. As I am an older female, I do not need replacement female hormones.

I am now on 8mg/day prednisolone (which is considered slightly high) and 82.5 mcg/day leveothyroxine.

I am in the UK.

I was treated with 3mg/kg Ipi – four infusions at three week intervals. In the UK, the standard treatment does not include maintenence doses.

I developed hypophysitis (inflamation of the pituitary gland) after my fourth infusion. As it was my last infusion, it did not affect my treatment with Ipi.

I became very unwell (headaches, increasing fatigue, no appetite, swollen ankles, poor balance) and was diagnosed through a blood test that measured hormone levels. I also had an MRI but that was later. No mention was made of a lumbar puncture and I cannot see that it would have shown anything. Antibiotics only work for bacteria infections. Hypophystis triggered by Ipi is more like an autoimmune condition.

I was referred to an endocrinologist by my melanoma specialist.

I have zero anterior pituitary gland function and have been that way for over a year now.

I was never put on high dose steroids to control the inflamation. To be honest, I think the damage had been done by the time I was diagnosed so high dose steroids would have just made matters worse. I was put on close to replacement levels of the missing hormones.

I was put on 10mg/day prednisolone and 75 mcg/day levothryroxine. As I am female, I did not need any tetesterone replacement. As I am an older female, I do not need replacement female hormones.

I am now on 8mg/day prednisolone (which is considered slightly high) and 82.5 mcg/day leveothyroxine.

I am in the UK.

I was treated with 3mg/kg Ipi – four infusions at three week intervals. In the UK, the standard treatment does not include maintenence doses.

I developed hypophysitis (inflamation of the pituitary gland) after my fourth infusion. As it was my last infusion, it did not affect my treatment with Ipi.

I became very unwell (headaches, increasing fatigue, no appetite, swollen ankles, poor balance) and was diagnosed through a blood test that measured hormone levels. I also had an MRI but that was later. No mention was made of a lumbar puncture and I cannot see that it would have shown anything. Antibiotics only work for bacteria infections. Hypophystis triggered by Ipi is more like an autoimmune condition.

I was referred to an endocrinologist by my melanoma specialist.

I have zero anterior pituitary gland function and have been that way for over a year now.

I was never put on high dose steroids to control the inflamation. To be honest, I think the damage had been done by the time I was diagnosed so high dose steroids would have just made matters worse. I was put on close to replacement levels of the missing hormones.

I was put on 10mg/day prednisolone and 75 mcg/day levothryroxine. As I am female, I did not need any tetesterone replacement. As I am an older female, I do not need replacement female hormones.

I am now on 8mg/day prednisolone (which is considered slightly high) and 82.5 mcg/day leveothyroxine.