› Forums › General Melanoma Community › Hypophysitis
- This topic has 51 replies, 7 voices, and was last updated 8 years, 10 months ago by
jennunicorn.
- Post
-
- January 11, 2017 at 4:10 am
Question for those on here that have experienced hypophysitis as a side effect:
Did you get a headache? How long did it last before you got treated? What kind of headache did it feel like: dull all over head pain or neck and sharp pains in one part of head? Did you feel lightheaded?
I do have Prednisone on hand I can take at any time, I would just hate to jump into it if I don't have to. I have a PET/CT next Tuesday 1/17. I would like to just wait until I get the results of that and results of the blood tests I'll be getting Thursday 1/19 before jumping on the steroid train… but I'm wondering if I'm pushing it? Also have Nivo infusion scheduled for 1/19. All done with Ipi… which is likely the thing that is making me feel so crappy.
My headache has been around since Wednesday evening after getting up from laying on the couch and a sharp pain and tightness occured in my neck which hurt for a bit but went away leaving the headace. Still getting the fever every evening and taking Aleve which helps with that.
My onc is back in the office on Thursday, so I'll be asking her about the same stuff, just want to get an idea from other patients.
- Replies
-
-
- January 11, 2017 at 4:56 am
HI Jennifer,
Ipi gave me hypophysitis. It manifested as a dull headache located at the peak of my skull. By the time it was diagnosed I needed 800mg of ibuprofen (400 am, 400 pm) and 2.5mg oxycodone.
The only part of my pituitary to recover is a small portion that regulates my thyroid. The damage is permanent. My hormone replacement consists of:
175mcg l-thyroxine
20mg hydrocortisone
200mg testosterone every 2 weeks
It took 2 or 3 months following symptom onset until diagnosis as it was not a well known side effect at the time. I did feel lightheaded.
You will need an MRI to see if your pituitary is inflamed. An on the ball endocrinologist is essential as well since there are other tests to see if your cortisol level is low, and more importantly, if it is being modulated by your pituitary. It seems likely that you would also want an investigation into your sex hormones.
If you do have this condition, the best is for your oncologist and endocrinologist to work out a stabilization plan.
Hope this helps – Paul
-
- January 11, 2017 at 5:14 am
Thank you Paul, hopefully that is not what is going on, but I know it's a possibility so I have to keep it on the table until things get figured out.
-
- January 11, 2017 at 5:14 am
Thank you Paul, hopefully that is not what is going on, but I know it's a possibility so I have to keep it on the table until things get figured out.
-
- January 11, 2017 at 5:14 am
Thank you Paul, hopefully that is not what is going on, but I know it's a possibility so I have to keep it on the table until things get figured out.
-
- January 11, 2017 at 4:56 am
HI Jennifer,
Ipi gave me hypophysitis. It manifested as a dull headache located at the peak of my skull. By the time it was diagnosed I needed 800mg of ibuprofen (400 am, 400 pm) and 2.5mg oxycodone.
The only part of my pituitary to recover is a small portion that regulates my thyroid. The damage is permanent. My hormone replacement consists of:
175mcg l-thyroxine
20mg hydrocortisone
200mg testosterone every 2 weeks
It took 2 or 3 months following symptom onset until diagnosis as it was not a well known side effect at the time. I did feel lightheaded.
You will need an MRI to see if your pituitary is inflamed. An on the ball endocrinologist is essential as well since there are other tests to see if your cortisol level is low, and more importantly, if it is being modulated by your pituitary. It seems likely that you would also want an investigation into your sex hormones.
If you do have this condition, the best is for your oncologist and endocrinologist to work out a stabilization plan.
Hope this helps – Paul
-
- January 11, 2017 at 4:56 am
HI Jennifer,
Ipi gave me hypophysitis. It manifested as a dull headache located at the peak of my skull. By the time it was diagnosed I needed 800mg of ibuprofen (400 am, 400 pm) and 2.5mg oxycodone.
The only part of my pituitary to recover is a small portion that regulates my thyroid. The damage is permanent. My hormone replacement consists of:
175mcg l-thyroxine
20mg hydrocortisone
200mg testosterone every 2 weeks
It took 2 or 3 months following symptom onset until diagnosis as it was not a well known side effect at the time. I did feel lightheaded.
You will need an MRI to see if your pituitary is inflamed. An on the ball endocrinologist is essential as well since there are other tests to see if your cortisol level is low, and more importantly, if it is being modulated by your pituitary. It seems likely that you would also want an investigation into your sex hormones.
If you do have this condition, the best is for your oncologist and endocrinologist to work out a stabilization plan.
Hope this helps – Paul
-
- January 11, 2017 at 5:46 am
My headache came on suddenly and was similar to that of a hangover. I had tightness mainly across my forehead and slightly to my right side. My eyes felt like they wanted to cross from time to time as well. I had it for two weeks before it was diagnosed via an MRI. I was promptly put on dexamethasone and the headaches were gone within 2 hours. This happened about a month after I took only 1 dose of ipi.As of right now, my only hormone that is still in production is my growth hormone. My hair is still pretty thick and luxurious. 😛 Everything else I have to take meds for. They are still testing me to see if my condition is permanent, but we are not optimistic.
Word of warning if you end up on a strong steroid. When I started mine I puffed up like a balloon and grew a minefield on my back. I felt like I was back in high school! On top of that, I barely slept, but had more energy than my kids! It was glorious. My house was so clean. The good with the bad I guess.
-
- January 11, 2017 at 5:49 am
That's one of the reasons I'd rather not start on steroids if I don't have to. Did you try taking over the counter drugs for your headache before getting diagnosed and going on steroids? Did they work? The Aleve I take every night for the fever seems to also put the headache to rest.
-
- January 11, 2017 at 5:49 am
That's one of the reasons I'd rather not start on steroids if I don't have to. Did you try taking over the counter drugs for your headache before getting diagnosed and going on steroids? Did they work? The Aleve I take every night for the fever seems to also put the headache to rest.
-
- January 11, 2017 at 5:49 am
That's one of the reasons I'd rather not start on steroids if I don't have to. Did you try taking over the counter drugs for your headache before getting diagnosed and going on steroids? Did they work? The Aleve I take every night for the fever seems to also put the headache to rest.
-
- January 11, 2017 at 5:46 am
My headache came on suddenly and was similar to that of a hangover. I had tightness mainly across my forehead and slightly to my right side. My eyes felt like they wanted to cross from time to time as well. I had it for two weeks before it was diagnosed via an MRI. I was promptly put on dexamethasone and the headaches were gone within 2 hours. This happened about a month after I took only 1 dose of ipi.As of right now, my only hormone that is still in production is my growth hormone. My hair is still pretty thick and luxurious. 😛 Everything else I have to take meds for. They are still testing me to see if my condition is permanent, but we are not optimistic.
Word of warning if you end up on a strong steroid. When I started mine I puffed up like a balloon and grew a minefield on my back. I felt like I was back in high school! On top of that, I barely slept, but had more energy than my kids! It was glorious. My house was so clean. The good with the bad I guess.
-
- January 11, 2017 at 5:46 am
My headache came on suddenly and was similar to that of a hangover. I had tightness mainly across my forehead and slightly to my right side. My eyes felt like they wanted to cross from time to time as well. I had it for two weeks before it was diagnosed via an MRI. I was promptly put on dexamethasone and the headaches were gone within 2 hours. This happened about a month after I took only 1 dose of ipi.As of right now, my only hormone that is still in production is my growth hormone. My hair is still pretty thick and luxurious. 😛 Everything else I have to take meds for. They are still testing me to see if my condition is permanent, but we are not optimistic.
Word of warning if you end up on a strong steroid. When I started mine I puffed up like a balloon and grew a minefield on my back. I felt like I was back in high school! On top of that, I barely slept, but had more energy than my kids! It was glorious. My house was so clean. The good with the bad I guess.
-
- January 11, 2017 at 3:33 pm
Hi Jenn,
Think we started combo at roughly the same time. Dose3 help diue to liver alt act and GGT elevated . Steroids prescribed. But evening headaches started. ,then started afternoons now on and off most of the day but more intense as steroids have tapered. Currently sat in cloinic waiting to give blood. Usual onespluds urra and electrolytes, free t4,t3.tsh..Chloride,lipase, alt,ast,GGT,crp.Hopefully will find of a bit more… Ladies seem to be more vulnerable to endocrine issues but they are finding more cases…because they are looking for them.
Think my nausea and maybe headaches were treated by steroids for liver issues but are showing a bit more now…MRI brain to check in 10 days and Ct scan to checkout rest 2 days later.
Peggy (landlover ) has thyroid issues …after 2 doses of combo…
I'm still getting hot sweats but am currently blaming menopause as had a month or so of this immune..but it could be the combo…really hard sometimes to work out what is causing what..
Will post if I find out anything intetresting…other than review in 2 weeks.
Deb
PS hope yr headaches go soon.
-
- January 11, 2017 at 3:33 pm
Hi Jenn,
Think we started combo at roughly the same time. Dose3 help diue to liver alt act and GGT elevated . Steroids prescribed. But evening headaches started. ,then started afternoons now on and off most of the day but more intense as steroids have tapered. Currently sat in cloinic waiting to give blood. Usual onespluds urra and electrolytes, free t4,t3.tsh..Chloride,lipase, alt,ast,GGT,crp.Hopefully will find of a bit more… Ladies seem to be more vulnerable to endocrine issues but they are finding more cases…because they are looking for them.
Think my nausea and maybe headaches were treated by steroids for liver issues but are showing a bit more now…MRI brain to check in 10 days and Ct scan to checkout rest 2 days later.
Peggy (landlover ) has thyroid issues …after 2 doses of combo…
I'm still getting hot sweats but am currently blaming menopause as had a month or so of this immune..but it could be the combo…really hard sometimes to work out what is causing what..
Will post if I find out anything intetresting…other than review in 2 weeks.
Deb
PS hope yr headaches go soon.
-
- January 11, 2017 at 5:21 pm
Thank you Deb, hope your scans go well
-
- January 11, 2017 at 5:21 pm
Thank you Deb, hope your scans go well
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 10:23 pm
Thanks for the info, tell that liver to relax! 🙂
-
- January 11, 2017 at 10:23 pm
Thanks for the info, tell that liver to relax! 🙂
-
- January 11, 2017 at 10:23 pm
Thanks for the info, tell that liver to relax! 🙂
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 8:28 pm
Sorry for all the typos— just landed home- liver tests were raised from when we started the taper- so more steroids and review 23/1. Ct scan and possible treatment- busy day…….
Ok – endocrine side effects usually crop up with ipi around week 9.. but of course this varies. Early articles say rare side effect – hypophysitis but as the docs look for it more- they are finding more…so I think it will be well over 10 % affected when larger samples from recent studies are reported. This study states some have found rate as high as 17%- https://www.omicsgroup.org/journals/immunotherapy-and-hypophysitis-in-the-clinical-practice-a-case-report-2165-7920-1000861.pdf
and unfortunately this is one of side effects that does not fully recover- but if in exchange it sorts the melanoma- that is ok by me……
Have been promised more of the lab results by email– but they are what they are. Will post more when I have more info…
Love and best wishes
Deb
-
- January 11, 2017 at 5:21 pm
Thank you Deb, hope your scans go well
-
- January 11, 2017 at 3:33 pm
Hi Jenn,
Think we started combo at roughly the same time. Dose3 help diue to liver alt act and GGT elevated . Steroids prescribed. But evening headaches started. ,then started afternoons now on and off most of the day but more intense as steroids have tapered. Currently sat in cloinic waiting to give blood. Usual onespluds urra and electrolytes, free t4,t3.tsh..Chloride,lipase, alt,ast,GGT,crp.Hopefully will find of a bit more… Ladies seem to be more vulnerable to endocrine issues but they are finding more cases…because they are looking for them.
Think my nausea and maybe headaches were treated by steroids for liver issues but are showing a bit more now…MRI brain to check in 10 days and Ct scan to checkout rest 2 days later.
Peggy (landlover ) has thyroid issues …after 2 doses of combo…
I'm still getting hot sweats but am currently blaming menopause as had a month or so of this immune..but it could be the combo…really hard sometimes to work out what is causing what..
Will post if I find out anything intetresting…other than review in 2 weeks.
Deb
PS hope yr headaches go soon.
-
- January 11, 2017 at 6:05 pm
I was recently dx-ed, so sorry for my question, but what is hypoohisitis? Wikipedia says "just over 100 cases reported, majority were female in their pregnancies and in early postpartum", i.e. nothing about mela or ipi or even cancer.
-
- January 11, 2017 at 6:05 pm
I was recently dx-ed, so sorry for my question, but what is hypoohisitis? Wikipedia says "just over 100 cases reported, majority were female in their pregnancies and in early postpartum", i.e. nothing about mela or ipi or even cancer.
-
- January 11, 2017 at 7:05 pm
It is inflammation of the pituitary gland which is one of the side effects of immunotherapy, but on the rare side of the side effects I believe.
-
- January 11, 2017 at 7:05 pm
It is inflammation of the pituitary gland which is one of the side effects of immunotherapy, but on the rare side of the side effects I believe.
-
- January 11, 2017 at 7:05 pm
It is inflammation of the pituitary gland which is one of the side effects of immunotherapy, but on the rare side of the side effects I believe.
-
- January 11, 2017 at 11:25 pm
This is a pretty interesting article. In this study with Ipi about 11% of the patients had hypophysitis. I vaguely recall another study that listed it at about 5% which seems low to me. Wouldn't be surprised if it's higher for Nivo/Ipi combo. The interesting thing in this study is the found the patients who did get hypohysitis had a better response. As UB Contributor pointed out, hypophysitis used to be very rare prior to immunotherapy but not so much anymore.
-
- January 11, 2017 at 11:25 pm
This is a pretty interesting article. In this study with Ipi about 11% of the patients had hypophysitis. I vaguely recall another study that listed it at about 5% which seems low to me. Wouldn't be surprised if it's higher for Nivo/Ipi combo. The interesting thing in this study is the found the patients who did get hypohysitis had a better response. As UB Contributor pointed out, hypophysitis used to be very rare prior to immunotherapy but not so much anymore.
-
- January 11, 2017 at 11:25 pm
This is a pretty interesting article. In this study with Ipi about 11% of the patients had hypophysitis. I vaguely recall another study that listed it at about 5% which seems low to me. Wouldn't be surprised if it's higher for Nivo/Ipi combo. The interesting thing in this study is the found the patients who did get hypohysitis had a better response. As UB Contributor pointed out, hypophysitis used to be very rare prior to immunotherapy but not so much anymore.
-
- January 11, 2017 at 6:05 pm
I was recently dx-ed, so sorry for my question, but what is hypoohisitis? Wikipedia says "just over 100 cases reported, majority were female in their pregnancies and in early postpartum", i.e. nothing about mela or ipi or even cancer.
-
- January 11, 2017 at 11:51 pm
Jenn,
About a week after my 3rd round of Ipi I started to develop a mild sinus like headache. That lasted a couple days until gradually over a few days in spread to my whole head. Still mild at this point and I could control it with Tylenol or something like that. This continued on for about another week and I was convinced I had mets in my brain (was not familiar with the hypohysitis SE at that time). I had a MRI done which thankfully did not show any mets but also did not show much pituitary enlargement either. I was at the point for my next infusion and around that time it was getting very uncomfortable. Tylenol and the like weren't able to do the job anymore and I couldn't sleep due to the pain. My oncologist cancelled my 4th infusion and put me on 60mg of prednisone. Within about an hour of taking the prednisone I had a dramatic improvement. Pain just about went away completely.
In hindsight I would have loved to have had prednisone on hand. Feel like if I would have tried it earlier I may have been able to save some of my pituitary function. I think most experts agree the use of prednisone has shown negligible impact on nivo or ipi benefit. If you've had a consistent headache for over a week and it goes away after a does of prednisone I think that's a pretty good confirmation. That's my non-medical opinion for what it's worth. Obviously work with your team but it doesn't hurt to tell them what you want to do.
-
- January 11, 2017 at 11:51 pm
Jenn,
About a week after my 3rd round of Ipi I started to develop a mild sinus like headache. That lasted a couple days until gradually over a few days in spread to my whole head. Still mild at this point and I could control it with Tylenol or something like that. This continued on for about another week and I was convinced I had mets in my brain (was not familiar with the hypohysitis SE at that time). I had a MRI done which thankfully did not show any mets but also did not show much pituitary enlargement either. I was at the point for my next infusion and around that time it was getting very uncomfortable. Tylenol and the like weren't able to do the job anymore and I couldn't sleep due to the pain. My oncologist cancelled my 4th infusion and put me on 60mg of prednisone. Within about an hour of taking the prednisone I had a dramatic improvement. Pain just about went away completely.
In hindsight I would have loved to have had prednisone on hand. Feel like if I would have tried it earlier I may have been able to save some of my pituitary function. I think most experts agree the use of prednisone has shown negligible impact on nivo or ipi benefit. If you've had a consistent headache for over a week and it goes away after a does of prednisone I think that's a pretty good confirmation. That's my non-medical opinion for what it's worth. Obviously work with your team but it doesn't hurt to tell them what you want to do.
-
- January 11, 2017 at 11:51 pm
Jenn,
About a week after my 3rd round of Ipi I started to develop a mild sinus like headache. That lasted a couple days until gradually over a few days in spread to my whole head. Still mild at this point and I could control it with Tylenol or something like that. This continued on for about another week and I was convinced I had mets in my brain (was not familiar with the hypohysitis SE at that time). I had a MRI done which thankfully did not show any mets but also did not show much pituitary enlargement either. I was at the point for my next infusion and around that time it was getting very uncomfortable. Tylenol and the like weren't able to do the job anymore and I couldn't sleep due to the pain. My oncologist cancelled my 4th infusion and put me on 60mg of prednisone. Within about an hour of taking the prednisone I had a dramatic improvement. Pain just about went away completely.
In hindsight I would have loved to have had prednisone on hand. Feel like if I would have tried it earlier I may have been able to save some of my pituitary function. I think most experts agree the use of prednisone has shown negligible impact on nivo or ipi benefit. If you've had a consistent headache for over a week and it goes away after a does of prednisone I think that's a pretty good confirmation. That's my non-medical opinion for what it's worth. Obviously work with your team but it doesn't hurt to tell them what you want to do.
-
- January 12, 2017 at 12:18 am
Thanks for sharing Brian. The headache is gone today and I'm feeling better than I have in a week… hoping I continue to feel better. It is really interesting how rare hypophysitis was before these drugs.
-
- January 12, 2017 at 12:18 am
Thanks for sharing Brian. The headache is gone today and I'm feeling better than I have in a week… hoping I continue to feel better. It is really interesting how rare hypophysitis was before these drugs.
-
- January 12, 2017 at 12:18 am
Thanks for sharing Brian. The headache is gone today and I'm feeling better than I have in a week… hoping I continue to feel better. It is really interesting how rare hypophysitis was before these drugs.
-
- January 13, 2017 at 12:33 am
My symptoms and treatment is very similar to Paul's.
I was only diagnosed and treated after going into adrenal crisis.
I urge you to be cautious after damage is done to the pituitary it more than likely permanent.
-
- You must be logged in to reply to this topic.