› Forums › General Melanoma Community › tapering off prednizone–any advice?
- This topic has 15 replies, 4 voices, and was last updated 10 years, 2 months ago by
kalisama.
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- October 25, 2014 at 4:17 pm
My husband is stage 4 with melanoma in the liver and lymph nodes. (Had 3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.
My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop. Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.
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- October 25, 2014 at 5:00 pm
I was taking up to 40mg of prednisone each day for an unrelated condition (Meniere's). You are right, you cannot just stop cold-turkey. Have you discussed this with his doctor? The doctor that prescribed the prednisone is your best resource for information on a safe way to taper off. I'm sorry I'm not aware of any supplements you might take. An NMD or DO might be able to help in that way.
Best of luck to you
Maggie
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- October 25, 2014 at 5:00 pm
I was taking up to 40mg of prednisone each day for an unrelated condition (Meniere's). You are right, you cannot just stop cold-turkey. Have you discussed this with his doctor? The doctor that prescribed the prednisone is your best resource for information on a safe way to taper off. I'm sorry I'm not aware of any supplements you might take. An NMD or DO might be able to help in that way.
Best of luck to you
Maggie
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- October 25, 2014 at 5:00 pm
I was taking up to 40mg of prednisone each day for an unrelated condition (Meniere's). You are right, you cannot just stop cold-turkey. Have you discussed this with his doctor? The doctor that prescribed the prednisone is your best resource for information on a safe way to taper off. I'm sorry I'm not aware of any supplements you might take. An NMD or DO might be able to help in that way.
Best of luck to you
Maggie
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- October 25, 2014 at 5:45 pm
HiIt sounds like your husband may have developed hypophysitis as a result of the Ipi treatment. Unfortunately, the majority of patients who develop hypophysitis have not been able to fully recover their pituitary function and are depedent on steroids long term. Is you husband seeing an endocrinologist? An endocrinologist with some experience treating Ipi induced hypophysitis would likely be the best to manage his treatment. My husband did experience significant reflux while on higher doses of steroids. He was already being treated for reflux before starting steroids. Now that he only receives physiologic replacement of the steroids (he is on Hydrocortisone) he no longer has uncontrolled reflux. Your husband may be able to be tapered to a lower dose of steroids (10mg of Prednisone is on the higher side for replacement) or perhaps a different steroid and it is possible that may help. Again, it would be best that his care be taken on by a physician who understands hypophysitis. As you now know, it is imperative not to just stop the steroids. That could actually be life threatening.Best,Kate -
- October 25, 2014 at 5:45 pm
HiIt sounds like your husband may have developed hypophysitis as a result of the Ipi treatment. Unfortunately, the majority of patients who develop hypophysitis have not been able to fully recover their pituitary function and are depedent on steroids long term. Is you husband seeing an endocrinologist? An endocrinologist with some experience treating Ipi induced hypophysitis would likely be the best to manage his treatment. My husband did experience significant reflux while on higher doses of steroids. He was already being treated for reflux before starting steroids. Now that he only receives physiologic replacement of the steroids (he is on Hydrocortisone) he no longer has uncontrolled reflux. Your husband may be able to be tapered to a lower dose of steroids (10mg of Prednisone is on the higher side for replacement) or perhaps a different steroid and it is possible that may help. Again, it would be best that his care be taken on by a physician who understands hypophysitis. As you now know, it is imperative not to just stop the steroids. That could actually be life threatening.Best,Kate -
- October 25, 2014 at 5:45 pm
HiIt sounds like your husband may have developed hypophysitis as a result of the Ipi treatment. Unfortunately, the majority of patients who develop hypophysitis have not been able to fully recover their pituitary function and are depedent on steroids long term. Is you husband seeing an endocrinologist? An endocrinologist with some experience treating Ipi induced hypophysitis would likely be the best to manage his treatment. My husband did experience significant reflux while on higher doses of steroids. He was already being treated for reflux before starting steroids. Now that he only receives physiologic replacement of the steroids (he is on Hydrocortisone) he no longer has uncontrolled reflux. Your husband may be able to be tapered to a lower dose of steroids (10mg of Prednisone is on the higher side for replacement) or perhaps a different steroid and it is possible that may help. Again, it would be best that his care be taken on by a physician who understands hypophysitis. As you now know, it is imperative not to just stop the steroids. That could actually be life threatening.Best,Kate -
- October 26, 2014 at 12:24 pm
Agreed. Work with physician on this.
I've been on insanely high doses of Dexamethasone 12 mg/day for over a month now and am suffering every possible side effect of this treatment. I'm on such high doses for 2 reasons:
1) to control the swelling in my brain due to mets and LMD which result in focus seizures
2) profolactic control of potential Ipi side effects, though this is secondary as I seem to be tolerating it well.While I did talk my onc in to bringing me down to 8 mg/day this past week, we won't have a definitive taper plan in place until I see him this week. I made the agreement that I will re-up to 12mg at the first sign of seizure or other neuro symptoms.
I am miserable on this med. I have every side effect possible, and it does not let up. I am mostly bed ridden and have gained uncanny amounts of weight. I don't sleep. I sweat all night, sleeping with windows open in CO this time of year! I am irritable, irrational, and miserable doesn't even cut it as a descriptiom
I will be finding out this week about adding a dieuretic to my program to take down some of the water weight.
That being said, it sounds like your husband's situation with Pred is very targeted, and I hope they come up with a sane and gentle taper program for him.
Best of health always,
kali-
- October 27, 2014 at 3:47 am
Kali
I was on Dexa mathasone for a few weeks for brain met swelling….I take kepra to avoid the siezures and bumex for the ankle wt and water swelling in knees ets.
they took me off the dex an started Pred 10mg…. now swelling better off and down to 5mg Pred last week.
so Ipi, Pred and bumex…..and now Keytruda… and of course a shit load of others to manage ll the side efects etc.
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- October 28, 2014 at 1:55 pm
Thank you Matt,
They are finally tapering me off the DEx, thank goodness! My oncologist was actually joking with me about developing every single side effect imaginable from it. It's been rough.
I'm down to 8 mg/day, with the addition of a dieuretic and potassium starting today as part of the program. Keppra still at 1850/day.
I'm not familiar with bumex, will look in to it and ask my onc. Unfortunately still at least a month out before we can get my next scans and get me to Keytruda despite two very large, and last seen growing brain mets as well as LMD infiltrating the Dural layer of my brain on both planes of my Sylvian Fissure. It's an infestation. Honestly, I was dealing with the focus seizures that were resulting way better than I am dealing with the DEX, so I feel this transition is for the best for me.
Bless,
kali -
- October 28, 2014 at 1:55 pm
Thank you Matt,
They are finally tapering me off the DEx, thank goodness! My oncologist was actually joking with me about developing every single side effect imaginable from it. It's been rough.
I'm down to 8 mg/day, with the addition of a dieuretic and potassium starting today as part of the program. Keppra still at 1850/day.
I'm not familiar with bumex, will look in to it and ask my onc. Unfortunately still at least a month out before we can get my next scans and get me to Keytruda despite two very large, and last seen growing brain mets as well as LMD infiltrating the Dural layer of my brain on both planes of my Sylvian Fissure. It's an infestation. Honestly, I was dealing with the focus seizures that were resulting way better than I am dealing with the DEX, so I feel this transition is for the best for me.
Bless,
kali -
- October 28, 2014 at 1:55 pm
Thank you Matt,
They are finally tapering me off the DEx, thank goodness! My oncologist was actually joking with me about developing every single side effect imaginable from it. It's been rough.
I'm down to 8 mg/day, with the addition of a dieuretic and potassium starting today as part of the program. Keppra still at 1850/day.
I'm not familiar with bumex, will look in to it and ask my onc. Unfortunately still at least a month out before we can get my next scans and get me to Keytruda despite two very large, and last seen growing brain mets as well as LMD infiltrating the Dural layer of my brain on both planes of my Sylvian Fissure. It's an infestation. Honestly, I was dealing with the focus seizures that were resulting way better than I am dealing with the DEX, so I feel this transition is for the best for me.
Bless,
kali -
- October 27, 2014 at 3:47 am
Kali
I was on Dexa mathasone for a few weeks for brain met swelling….I take kepra to avoid the siezures and bumex for the ankle wt and water swelling in knees ets.
they took me off the dex an started Pred 10mg…. now swelling better off and down to 5mg Pred last week.
so Ipi, Pred and bumex…..and now Keytruda… and of course a shit load of others to manage ll the side efects etc.
-
- October 27, 2014 at 3:47 am
Kali
I was on Dexa mathasone for a few weeks for brain met swelling….I take kepra to avoid the siezures and bumex for the ankle wt and water swelling in knees ets.
they took me off the dex an started Pred 10mg…. now swelling better off and down to 5mg Pred last week.
so Ipi, Pred and bumex…..and now Keytruda… and of course a shit load of others to manage ll the side efects etc.
-
- October 26, 2014 at 12:24 pm
Agreed. Work with physician on this.
I've been on insanely high doses of Dexamethasone 12 mg/day for over a month now and am suffering every possible side effect of this treatment. I'm on such high doses for 2 reasons:
1) to control the swelling in my brain due to mets and LMD which result in focus seizures
2) profolactic control of potential Ipi side effects, though this is secondary as I seem to be tolerating it well.While I did talk my onc in to bringing me down to 8 mg/day this past week, we won't have a definitive taper plan in place until I see him this week. I made the agreement that I will re-up to 12mg at the first sign of seizure or other neuro symptoms.
I am miserable on this med. I have every side effect possible, and it does not let up. I am mostly bed ridden and have gained uncanny amounts of weight. I don't sleep. I sweat all night, sleeping with windows open in CO this time of year! I am irritable, irrational, and miserable doesn't even cut it as a descriptiom
I will be finding out this week about adding a dieuretic to my program to take down some of the water weight.
That being said, it sounds like your husband's situation with Pred is very targeted, and I hope they come up with a sane and gentle taper program for him.
Best of health always,
kali -
- October 26, 2014 at 12:24 pm
Agreed. Work with physician on this.
I've been on insanely high doses of Dexamethasone 12 mg/day for over a month now and am suffering every possible side effect of this treatment. I'm on such high doses for 2 reasons:
1) to control the swelling in my brain due to mets and LMD which result in focus seizures
2) profolactic control of potential Ipi side effects, though this is secondary as I seem to be tolerating it well.While I did talk my onc in to bringing me down to 8 mg/day this past week, we won't have a definitive taper plan in place until I see him this week. I made the agreement that I will re-up to 12mg at the first sign of seizure or other neuro symptoms.
I am miserable on this med. I have every side effect possible, and it does not let up. I am mostly bed ridden and have gained uncanny amounts of weight. I don't sleep. I sweat all night, sleeping with windows open in CO this time of year! I am irritable, irrational, and miserable doesn't even cut it as a descriptiom
I will be finding out this week about adding a dieuretic to my program to take down some of the water weight.
That being said, it sounds like your husband's situation with Pred is very targeted, and I hope they come up with a sane and gentle taper program for him.
Best of health always,
kali
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