› Forums › General Melanoma Community › are these post treatment side affects?
- This topic has 30 replies, 6 voices, and was last updated 7 years, 6 months ago by
KAF.
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- September 29, 2016 at 8:19 pm
Hi all
I developed hypophysitis 1 week after my 3rd dose of ipi/nivo in mid July. I've been on steroids, was weaned down when pituitary became inflamed again. I went back on hi-dose steroids (100mg) a couple of weeks ago and now I'm down to 40mg. I'm hoping to continue lowering that number but monday night (3am tuesday) I woke with what felt like flu- 103.2 fever and horrible chills. I took advil and I felt fine the rest of the day except for fluctuating between chills & sweats during the day. The fever didn't come back during the day. I have no sore throat, cold, or any other symptom that would make it seem like a flu. Yesterday morning I woke up at 4am with a fever of 103.4 and chills again. I took advil, felt fine the rest of the day and the fever went away. This morning about 2am my fever came back – 101.2 – and the chills weren't so bad but the muscle aches were painful. The advil took the fever down and got rid of the muscle aches but my hands are tingly today and my vision is horrible today and I can barely read what I'm typing.
I called my doc and spoke with the nurse. She thinks these are all side affects from the ipi since i've only been off it since mid july and she said this can happen after the treament is done. I would have just thought that the hi dose steroid i'm on would have stopped the drug from all these side affect. Does that mean the drug is still working in my system even while on the steroids?
thanks!
karen
- Replies
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- September 30, 2016 at 2:57 pm
Hi Karen, the way that Ipi works on your immune system is to stop ctla-4 production in the t-cell so it can't shut down the t-cell which is part of the normal process so that we don't develop auto immune disease. When you get side effects from ipi or the combination of ipi and nivo, the steroids treat the symptoms(example colitis) but my understanding is that the steroid does not stop the effect of Ipi on the t-cell. Most Oncologist will stop giving the Immunotherapy drugs until the symptoms subside and then will start treatments again on a case by case basis depending on how severe the side effects were. Many will stop giving more Ipi but will continue to give the Pd-1 drugs. There is a criteria that Oncologist follow as to when to shut down treatments and how long to give steroids for. Best Wishes!!!Ed
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- September 30, 2016 at 2:57 pm
Hi Karen, the way that Ipi works on your immune system is to stop ctla-4 production in the t-cell so it can't shut down the t-cell which is part of the normal process so that we don't develop auto immune disease. When you get side effects from ipi or the combination of ipi and nivo, the steroids treat the symptoms(example colitis) but my understanding is that the steroid does not stop the effect of Ipi on the t-cell. Most Oncologist will stop giving the Immunotherapy drugs until the symptoms subside and then will start treatments again on a case by case basis depending on how severe the side effects were. Many will stop giving more Ipi but will continue to give the Pd-1 drugs. There is a criteria that Oncologist follow as to when to shut down treatments and how long to give steroids for. Best Wishes!!!Ed
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- September 30, 2016 at 2:57 pm
Hi Karen, the way that Ipi works on your immune system is to stop ctla-4 production in the t-cell so it can't shut down the t-cell which is part of the normal process so that we don't develop auto immune disease. When you get side effects from ipi or the combination of ipi and nivo, the steroids treat the symptoms(example colitis) but my understanding is that the steroid does not stop the effect of Ipi on the t-cell. Most Oncologist will stop giving the Immunotherapy drugs until the symptoms subside and then will start treatments again on a case by case basis depending on how severe the side effects were. Many will stop giving more Ipi but will continue to give the Pd-1 drugs. There is a criteria that Oncologist follow as to when to shut down treatments and how long to give steroids for. Best Wishes!!!Ed
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- October 3, 2016 at 2:05 pm
I am on ipi/nivo and ran fever for 6 weeks, spent 3 days in the hospital searching for an infection but it was a side effect of the drug. I learned to control it by taking motrin every 4 hours before the fever came back. every couple of days I would go past the 4 hours to see if the fever returned. Usually about 4 1/2 hours the fever would return. It was the worst chills and sweats I ever had. It has been gone for about 3 weeks now but was replaced with a horrible dry thick gluey mouth.
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- October 3, 2016 at 2:05 pm
I am on ipi/nivo and ran fever for 6 weeks, spent 3 days in the hospital searching for an infection but it was a side effect of the drug. I learned to control it by taking motrin every 4 hours before the fever came back. every couple of days I would go past the 4 hours to see if the fever returned. Usually about 4 1/2 hours the fever would return. It was the worst chills and sweats I ever had. It has been gone for about 3 weeks now but was replaced with a horrible dry thick gluey mouth.
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- October 3, 2016 at 2:05 pm
I am on ipi/nivo and ran fever for 6 weeks, spent 3 days in the hospital searching for an infection but it was a side effect of the drug. I learned to control it by taking motrin every 4 hours before the fever came back. every couple of days I would go past the 4 hours to see if the fever returned. Usually about 4 1/2 hours the fever would return. It was the worst chills and sweats I ever had. It has been gone for about 3 weeks now but was replaced with a horrible dry thick gluey mouth.
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- October 5, 2016 at 3:50 am
Thanks for your info. I did a ton a lab work at the hospital on Friday.. THey pretty much found nothing – no flu, no infection, etc.. They changed my prednisone dose to take half in the am and half at dinner and that seems to have done the trick since the fever/aches/chills only came on while sleeping. They were thinking it wasn't a side affect because is came on 10 weeks after I was done with my treatment (had to stop mid July due to in inflamed pituitary and I've been on prednisone ever since cuz it keeps coming back).
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- October 5, 2016 at 3:50 am
Thanks for your info. I did a ton a lab work at the hospital on Friday.. THey pretty much found nothing – no flu, no infection, etc.. They changed my prednisone dose to take half in the am and half at dinner and that seems to have done the trick since the fever/aches/chills only came on while sleeping. They were thinking it wasn't a side affect because is came on 10 weeks after I was done with my treatment (had to stop mid July due to in inflamed pituitary and I've been on prednisone ever since cuz it keeps coming back).
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- October 5, 2016 at 3:50 am
Thanks for your info. I did a ton a lab work at the hospital on Friday.. THey pretty much found nothing – no flu, no infection, etc.. They changed my prednisone dose to take half in the am and half at dinner and that seems to have done the trick since the fever/aches/chills only came on while sleeping. They were thinking it wasn't a side affect because is came on 10 weeks after I was done with my treatment (had to stop mid July due to in inflamed pituitary and I've been on prednisone ever since cuz it keeps coming back).
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- October 3, 2016 at 10:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
-
- October 3, 2016 at 10:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
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- October 5, 2016 at 3:58 am
Hi Aaron,
They did all the flu, infection, etc.. Tests at the hospital on Friday. Nurse who has worked for years with immunotherapy patients definitely thought it was ipi side affects. Endocrinologist wants to take me down to 20 now but we decided to do 20 in the am and 20 in the pm to see if the flu like symptoms I got in the evening would go away. Sure enough as soon as I took 20mg around dinner time, the night time symptoms went away. My vision keeps changing – one minute it's fine, the next I can't read my computer. The MRI showed no pressure on the optic nerve though. Now I'm wondering if it's the prednisone that's doing it and not the hypophisitis. Do the headaches you have now feel like they are in the same location as when you were diagnosed with the hypophisitis? I still get a headache 1x or 2x daily but they always seem to be at the top of my head as when I first got them. Tylenol never seems to work on me and I was worried about taking Advil with the prednisone but it was the only thing that brought down the fever and chills. So far my stomach has been doing okay – I have to remember to keep taking the meds with food though.
when are they taking you below 20mg? Any news on the nivo maintenance for you?
Karen
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- October 5, 2016 at 3:58 am
Hi Aaron,
They did all the flu, infection, etc.. Tests at the hospital on Friday. Nurse who has worked for years with immunotherapy patients definitely thought it was ipi side affects. Endocrinologist wants to take me down to 20 now but we decided to do 20 in the am and 20 in the pm to see if the flu like symptoms I got in the evening would go away. Sure enough as soon as I took 20mg around dinner time, the night time symptoms went away. My vision keeps changing – one minute it's fine, the next I can't read my computer. The MRI showed no pressure on the optic nerve though. Now I'm wondering if it's the prednisone that's doing it and not the hypophisitis. Do the headaches you have now feel like they are in the same location as when you were diagnosed with the hypophisitis? I still get a headache 1x or 2x daily but they always seem to be at the top of my head as when I first got them. Tylenol never seems to work on me and I was worried about taking Advil with the prednisone but it was the only thing that brought down the fever and chills. So far my stomach has been doing okay – I have to remember to keep taking the meds with food though.
when are they taking you below 20mg? Any news on the nivo maintenance for you?
Karen
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- October 5, 2016 at 4:34 pm
My headaches moved. When it was caused by my pituitary it was like a brain freeze headache from eating ice cream too fast. My later headaches were at the base of my skull. I was actually moved down to 10 mg yesterday. My biggest side effect seems to be anxiety and short tempered. I resumed Nivo maintenance last week and get another dose next week. I wonder if my aching joints is from resuming treatments. Actually today I am achy again.
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- October 5, 2016 at 4:34 pm
My headaches moved. When it was caused by my pituitary it was like a brain freeze headache from eating ice cream too fast. My later headaches were at the base of my skull. I was actually moved down to 10 mg yesterday. My biggest side effect seems to be anxiety and short tempered. I resumed Nivo maintenance last week and get another dose next week. I wonder if my aching joints is from resuming treatments. Actually today I am achy again.
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- October 6, 2016 at 1:49 pm
Everything I read online seems to say that the achy joints are a typical side affect of the prednisone reduction so if it's really bad you may have needed to go to 15 before dropping to 10 although it sounds like they will go away once your body adjusts so you may just need to pop some more Tylenol. So glad to hear you got on the Nivo though!! I'm hoping I'm just a couple of weeks away from that. Endo dropped me to 30mg/day (20 in the am, 10 in the pm to avoid the nighttime issues I had last week with flu symptoms at night). I think i'll be down to 20 total by next week. I get the short tempered thing. I've made a promise to myself to take a "time out" before getting angry with my teen daughter and not say what first comes to mind. I think I gave myself 3 time outs yesterday.
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- October 6, 2016 at 1:49 pm
Everything I read online seems to say that the achy joints are a typical side affect of the prednisone reduction so if it's really bad you may have needed to go to 15 before dropping to 10 although it sounds like they will go away once your body adjusts so you may just need to pop some more Tylenol. So glad to hear you got on the Nivo though!! I'm hoping I'm just a couple of weeks away from that. Endo dropped me to 30mg/day (20 in the am, 10 in the pm to avoid the nighttime issues I had last week with flu symptoms at night). I think i'll be down to 20 total by next week. I get the short tempered thing. I've made a promise to myself to take a "time out" before getting angry with my teen daughter and not say what first comes to mind. I think I gave myself 3 time outs yesterday.
-
- October 6, 2016 at 1:49 pm
Everything I read online seems to say that the achy joints are a typical side affect of the prednisone reduction so if it's really bad you may have needed to go to 15 before dropping to 10 although it sounds like they will go away once your body adjusts so you may just need to pop some more Tylenol. So glad to hear you got on the Nivo though!! I'm hoping I'm just a couple of weeks away from that. Endo dropped me to 30mg/day (20 in the am, 10 in the pm to avoid the nighttime issues I had last week with flu symptoms at night). I think i'll be down to 20 total by next week. I get the short tempered thing. I've made a promise to myself to take a "time out" before getting angry with my teen daughter and not say what first comes to mind. I think I gave myself 3 time outs yesterday.
-
- October 5, 2016 at 4:34 pm
My headaches moved. When it was caused by my pituitary it was like a brain freeze headache from eating ice cream too fast. My later headaches were at the base of my skull. I was actually moved down to 10 mg yesterday. My biggest side effect seems to be anxiety and short tempered. I resumed Nivo maintenance last week and get another dose next week. I wonder if my aching joints is from resuming treatments. Actually today I am achy again.
-
- October 5, 2016 at 3:58 am
Hi Aaron,
They did all the flu, infection, etc.. Tests at the hospital on Friday. Nurse who has worked for years with immunotherapy patients definitely thought it was ipi side affects. Endocrinologist wants to take me down to 20 now but we decided to do 20 in the am and 20 in the pm to see if the flu like symptoms I got in the evening would go away. Sure enough as soon as I took 20mg around dinner time, the night time symptoms went away. My vision keeps changing – one minute it's fine, the next I can't read my computer. The MRI showed no pressure on the optic nerve though. Now I'm wondering if it's the prednisone that's doing it and not the hypophisitis. Do the headaches you have now feel like they are in the same location as when you were diagnosed with the hypophisitis? I still get a headache 1x or 2x daily but they always seem to be at the top of my head as when I first got them. Tylenol never seems to work on me and I was worried about taking Advil with the prednisone but it was the only thing that brought down the fever and chills. So far my stomach has been doing okay – I have to remember to keep taking the meds with food though.
when are they taking you below 20mg? Any news on the nivo maintenance for you?
Karen
-
- October 3, 2016 at 10:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
-
- October 3, 2016 at 11:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
-
- October 3, 2016 at 11:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
-
- October 3, 2016 at 11:33 pm
Kaf,
I am currently down to 20 per day but I was never weaned early like you were. I will say that every time my dr has seen me I have been asked about my vision. I assume it is because of the swelling of pituitary and its location relative to the optic nerve. I will also say that over the weekend I experienced joint pain like a flu but it seems to have gone away. I also developed regular headaches but they subsided once the dr started lowering my prednisone dosage. One more thing my dr gave me explicit directions to only take Tylenol while on prednisone because of the damage prednisone can have on the stomach and NSAIDs can make it worse.
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