Adrenal fatigue after Yervoy

Hi Sharon,
Yes, I am going through the exact same thing. Is he still having Yervoy side-effects? I only got over colitis after 2 doses of Remicade
When I was finally tapered off prednisone, I was feeling horrible. The Endocronologist diagnosed adrenal failure. So I was put on hydrocortisone. I had to get medic alert bracelet and carry liquid cortisone and needles as this can be very serious. Some important facts:
Your husband should have a brain/pituitary MRI to rule out pituitary involvement.
He should only taper only after having a blood cortisol test, early morning, fasting, skipping the previous afternoon’s and that morning’s steroid dose. (the body makes different amounts of cortisol according to time of day.)
These items are important–he needs to be under the continuous care of an Endo who is hopefully associated with your melanoma center or at least one who his onc recommends Mine is tapering me from 20 to 15 to 10 and after a week on ten is doing bloods before tapering lower. SO, hopefully soon I’ll be off and hopefully your husband will too. Sorry this is so much info, if u want to talk my email is [email protected].

Hi Sharon,
Yes, I am going through the exact same thing. Is he still having Yervoy side-effects? I only got over colitis after 2 doses of Remicade
When I was finally tapered off prednisone, I was feeling horrible. The Endocronologist diagnosed adrenal failure. So I was put on hydrocortisone. I had to get medic alert bracelet and carry liquid cortisone and needles as this can be very serious. Some important facts:
Your husband should have a brain/pituitary MRI to rule out pituitary involvement.
He should only taper only after having a blood cortisol test, early morning, fasting, skipping the previous afternoon’s and that morning’s steroid dose. (the body makes different amounts of cortisol according to time of day.)
These items are important–he needs to be under the continuous care of an Endo who is hopefully associated with your melanoma center or at least one who his onc recommends Mine is tapering me from 20 to 15 to 10 and after a week on ten is doing bloods before tapering lower. SO, hopefully soon I’ll be off and hopefully your husband will too. Sorry this is so much info, if u want to talk my email is [email protected].

Hi Sharon,
Yes, I am going through the exact same thing. Is he still having Yervoy side-effects? I only got over colitis after 2 doses of Remicade
When I was finally tapered off prednisone, I was feeling horrible. The Endocronologist diagnosed adrenal failure. So I was put on hydrocortisone. I had to get medic alert bracelet and carry liquid cortisone and needles as this can be very serious. Some important facts:
Your husband should have a brain/pituitary MRI to rule out pituitary involvement.
He should only taper only after having a blood cortisol test, early morning, fasting, skipping the previous afternoon’s and that morning’s steroid dose. (the body makes different amounts of cortisol according to time of day.)
These items are important–he needs to be under the continuous care of an Endo who is hopefully associated with your melanoma center or at least one who his onc recommends Mine is tapering me from 20 to 15 to 10 and after a week on ten is doing bloods before tapering lower. SO, hopefully soon I’ll be off and hopefully your husband will too. Sorry this is so much info, if u want to talk my email is [email protected].

Hi Sharon,

 I was on Yervoy in 2008, before it was approved. I had the side effect of hypophysitis ( swelling of the pituitary gland). I was put on 10mgs of Hydrocortisone and have been taking it ever since. I tried unsuccessfully to taper off it several times, even a very gradual taper. I'd feel nauseated and wasn't able to continue. I have adrenal insufficiency and my pituitary doesn't produce the hormones on it's own. My endocrinologist at Moffitt Cancer Center said 50% of patients are not able to taper off Hydrocort. He added that if a patient isn't able to get off it within 2 years it's unlikely the patient will be able to taper off it later on.

 I'm at the normal replacement level at 10 mgs. Maybe your husband can try a very gradual taper, like cut back 2 mgs each 6 weeks. If he can get to 10 mgs then he's not exceeding the normal hormone replacement. Several doctors told me Hydrocort can lead to bone loss. I took a bone density test and sure enough I'm borderline for osteoporosis (at age 55). I'm taking extra calcium and vitamin D. I was on a bisphosnonate but I didn't like the side effects; i e bloating. My recent Dexa scan ( bone density) improved. Regular exercise should help also.

 I hope I've been of some assistance. Best of success and God bless.

 Jim M.

 stage 3C

 NED: 4 years, 9 months

Hi Sharon,

 I was on Yervoy in 2008, before it was approved. I had the side effect of hypophysitis ( swelling of the pituitary gland). I was put on 10mgs of Hydrocortisone and have been taking it ever since. I tried unsuccessfully to taper off it several times, even a very gradual taper. I'd feel nauseated and wasn't able to continue. I have adrenal insufficiency and my pituitary doesn't produce the hormones on it's own. My endocrinologist at Moffitt Cancer Center said 50% of patients are not able to taper off Hydrocort. He added that if a patient isn't able to get off it within 2 years it's unlikely the patient will be able to taper off it later on.

 I'm at the normal replacement level at 10 mgs. Maybe your husband can try a very gradual taper, like cut back 2 mgs each 6 weeks. If he can get to 10 mgs then he's not exceeding the normal hormone replacement. Several doctors told me Hydrocort can lead to bone loss. I took a bone density test and sure enough I'm borderline for osteoporosis (at age 55). I'm taking extra calcium and vitamin D. I was on a bisphosnonate but I didn't like the side effects; i e bloating. My recent Dexa scan ( bone density) improved. Regular exercise should help also.

 I hope I've been of some assistance. Best of success and God bless.

 Jim M.

 stage 3C

 NED: 4 years, 9 months

Hi Sharon,

 I was on Yervoy in 2008, before it was approved. I had the side effect of hypophysitis ( swelling of the pituitary gland). I was put on 10mgs of Hydrocortisone and have been taking it ever since. I tried unsuccessfully to taper off it several times, even a very gradual taper. I'd feel nauseated and wasn't able to continue. I have adrenal insufficiency and my pituitary doesn't produce the hormones on it's own. My endocrinologist at Moffitt Cancer Center said 50% of patients are not able to taper off Hydrocort. He added that if a patient isn't able to get off it within 2 years it's unlikely the patient will be able to taper off it later on.

 I'm at the normal replacement level at 10 mgs. Maybe your husband can try a very gradual taper, like cut back 2 mgs each 6 weeks. If he can get to 10 mgs then he's not exceeding the normal hormone replacement. Several doctors told me Hydrocort can lead to bone loss. I took a bone density test and sure enough I'm borderline for osteoporosis (at age 55). I'm taking extra calcium and vitamin D. I was on a bisphosnonate but I didn't like the side effects; i e bloating. My recent Dexa scan ( bone density) improved. Regular exercise should help also.

 I hope I've been of some assistance. Best of success and God bless.

 Jim M.

 stage 3C

 NED: 4 years, 9 months

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.