› Forums › General Melanoma Community › Fentanyl. Patch withdrawal help?
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Jubes.
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- March 10, 2015 at 5:16 am
Anyone had issues coming off fentanyl and did anything help?
i was on the twelve patch a couple weeks then the 25 for a couple months. I was having lots of stomach issues and diarrhea I thought was due to the radiation. So much so they did a ct of the abdomen and pelvis. Granted the Imodium did help the diarrhea a lot. Not sure why but that day I decided to drop down to the 12. Low and behold my stomach issues were a lot less and when they got the ct results they could not find anything wrong. So after 6 days on the 12 I felt weird. Like very agitated sleeplessness. Like my skin was crawling. So I decided to go back to the 25 but after only a few hours my stomach started messing up so switched back to the 12. Still lots of agitated sleeplessness so 2 days later I took the patch off and have been without for 2 days. But the sleeplessness agitation skin crawling continues. Not all the time but usually off and on especially in the evening and night.
I googled and apparently lots of people have this issue. But the only advice seemed to be to drop to a 5 patch but they said that didn't really help either. My pain or nerve tingling in my left foot and pain in my left hip and left lower leg are tolerable but this sleeplessness is crazy. Also read the foot nerve tingling others have when coming off fentanyl. Here I thought it might be nerve damage from radiation or the keytruda or a tumor pressing on a nerve only to find it really might just be part of the fentanyl withdrawal. Other advice was pretty much tough it out and hope it subsides which could be weeks or months.
Very crazy stuff. Any other advice what to do? I'll be seeing one doc tomorrow and my other one the next day but I've found it best to try and resolve things like this myself cause they tend to go way off track with more meds which I'm going to refuse from now on again. For example I was having massive syatic nerve pain in my left leg when I sat so they kept throwing stronger pain stuff at it and started radiation of the t4 and t5. Finally I became coherent enough to google and got a tailbone coxic cushion and low and behold instant relief when sitting. So yeah best to educate myself first in my opinion. Granted he's a great radiation doc and I would have been paralyzed without him but things like this are not his or his wonderful nurses specialty from my experience. Anyway I'm rambling. Sorry.
Artie
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- March 11, 2015 at 12:43 am
HI Artie! I had trouble withdrawing from the fentanyl patch too. I was on a much stronger patch than you and slowly creeped down. My main problem was nausea. I was totally off the patch when I went into NIH, which was the end of March last year. The withdrawal symptoms slowly subsided and I was really relieved to be free of the patch. My doctor put me on the patch to help with the pain I was experiencing from the lesions on my spine. I know you understand! Surgery helped relieve the pain. Pepcid helped my stomach. I don't know if I attribute the sleeplessness to the withdrawal or if it's my nature to have a hard time relaxing…especially considering what we're going through! So, I've given you zero advice! I'm sorry! Instead, I'll be your cheerleader. You can do it! I felt that each day things got a little better. Oh, one thing that I did was to stay on each dosage for three weeks…so I was on the 12 patch for three weeks and then the 5 for three weeks. I can't remember if there's a 2.5. If there is, I did that for three weeks too. After that, no patch. It took about a couple of weeks before I felt free of the fentanyl…just in time for the clinical trial at NIH!
Best wishes to you Artie!!!! Keeping you in my prayers!
Terrie
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- March 11, 2015 at 12:43 am
HI Artie! I had trouble withdrawing from the fentanyl patch too. I was on a much stronger patch than you and slowly creeped down. My main problem was nausea. I was totally off the patch when I went into NIH, which was the end of March last year. The withdrawal symptoms slowly subsided and I was really relieved to be free of the patch. My doctor put me on the patch to help with the pain I was experiencing from the lesions on my spine. I know you understand! Surgery helped relieve the pain. Pepcid helped my stomach. I don't know if I attribute the sleeplessness to the withdrawal or if it's my nature to have a hard time relaxing…especially considering what we're going through! So, I've given you zero advice! I'm sorry! Instead, I'll be your cheerleader. You can do it! I felt that each day things got a little better. Oh, one thing that I did was to stay on each dosage for three weeks…so I was on the 12 patch for three weeks and then the 5 for three weeks. I can't remember if there's a 2.5. If there is, I did that for three weeks too. After that, no patch. It took about a couple of weeks before I felt free of the fentanyl…just in time for the clinical trial at NIH!
Best wishes to you Artie!!!! Keeping you in my prayers!
Terrie
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- March 11, 2015 at 12:43 am
HI Artie! I had trouble withdrawing from the fentanyl patch too. I was on a much stronger patch than you and slowly creeped down. My main problem was nausea. I was totally off the patch when I went into NIH, which was the end of March last year. The withdrawal symptoms slowly subsided and I was really relieved to be free of the patch. My doctor put me on the patch to help with the pain I was experiencing from the lesions on my spine. I know you understand! Surgery helped relieve the pain. Pepcid helped my stomach. I don't know if I attribute the sleeplessness to the withdrawal or if it's my nature to have a hard time relaxing…especially considering what we're going through! So, I've given you zero advice! I'm sorry! Instead, I'll be your cheerleader. You can do it! I felt that each day things got a little better. Oh, one thing that I did was to stay on each dosage for three weeks…so I was on the 12 patch for three weeks and then the 5 for three weeks. I can't remember if there's a 2.5. If there is, I did that for three weeks too. After that, no patch. It took about a couple of weeks before I felt free of the fentanyl…just in time for the clinical trial at NIH!
Best wishes to you Artie!!!! Keeping you in my prayers!
Terrie
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- March 11, 2015 at 4:16 am
Thank you Terrie. My medical onc today confirmed yes I will experience things like this coming off a narcotic but that was pretty much all he had. I got dose 15 of keytruda though plus learning it is doing some good. There was an older scan where I apparently had something on my thyroid but the new ct it is not there anymore but another is on it in a different spot. I can only imagine what it must have been like for the folks that didn't have this miracle med. I feel sorry for them and am thankful for it. My doc again decided to postpone my next pet for about 6 weeks this time cause of all the cts my radiation doc did my insurance would go crazy if he tried to do a pet scan. So we shall see eventually what is going on. I think a lot have shrank and probably some have grown and I guess maybe some new but overall I think it should be looking good. Not remission but still doing pretty good in the fight I think. It is scary reading the ct reports especially when they talk about the spine and all the fractured this and that and tumors and things. It is a miracle I can still walk I think. I'm very blessed. Maybe I can try to get some sleep with that thought.
Artie
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- March 11, 2015 at 4:16 am
Thank you Terrie. My medical onc today confirmed yes I will experience things like this coming off a narcotic but that was pretty much all he had. I got dose 15 of keytruda though plus learning it is doing some good. There was an older scan where I apparently had something on my thyroid but the new ct it is not there anymore but another is on it in a different spot. I can only imagine what it must have been like for the folks that didn't have this miracle med. I feel sorry for them and am thankful for it. My doc again decided to postpone my next pet for about 6 weeks this time cause of all the cts my radiation doc did my insurance would go crazy if he tried to do a pet scan. So we shall see eventually what is going on. I think a lot have shrank and probably some have grown and I guess maybe some new but overall I think it should be looking good. Not remission but still doing pretty good in the fight I think. It is scary reading the ct reports especially when they talk about the spine and all the fractured this and that and tumors and things. It is a miracle I can still walk I think. I'm very blessed. Maybe I can try to get some sleep with that thought.
Artie
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- March 11, 2015 at 4:16 am
Thank you Terrie. My medical onc today confirmed yes I will experience things like this coming off a narcotic but that was pretty much all he had. I got dose 15 of keytruda though plus learning it is doing some good. There was an older scan where I apparently had something on my thyroid but the new ct it is not there anymore but another is on it in a different spot. I can only imagine what it must have been like for the folks that didn't have this miracle med. I feel sorry for them and am thankful for it. My doc again decided to postpone my next pet for about 6 weeks this time cause of all the cts my radiation doc did my insurance would go crazy if he tried to do a pet scan. So we shall see eventually what is going on. I think a lot have shrank and probably some have grown and I guess maybe some new but overall I think it should be looking good. Not remission but still doing pretty good in the fight I think. It is scary reading the ct reports especially when they talk about the spine and all the fractured this and that and tumors and things. It is a miracle I can still walk I think. I'm very blessed. Maybe I can try to get some sleep with that thought.
Artie
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- March 11, 2015 at 12:31 pm
Yah for Keytruda! I asked my oncolgist when I would get a PET since I haven't had one since March of 2013. He said he wouldn't do it until my CT scans and Brain MRI showed no evidence of disease. In general, are you feeling better? Has the choking problem resolved? My spine and hip are messed up but have remained stable since surgery in Oct 2013. The physical therapist at NIH taught me how to find "my neutral spine". It takes lots of practice but really alleviates pressure and pain. My posture was awful before I started making simple adjustments. The articles he gave me were from the Mayo Clinic, so I imagine you can Google them. I have all my scans and get my 13th dosage on St. Patrick's Day! I hope you were able to get some much needed sleep and that the withdrawal symptoms are beginning to ease up.
Take Care!
Terrie
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- March 11, 2015 at 12:31 pm
Yah for Keytruda! I asked my oncolgist when I would get a PET since I haven't had one since March of 2013. He said he wouldn't do it until my CT scans and Brain MRI showed no evidence of disease. In general, are you feeling better? Has the choking problem resolved? My spine and hip are messed up but have remained stable since surgery in Oct 2013. The physical therapist at NIH taught me how to find "my neutral spine". It takes lots of practice but really alleviates pressure and pain. My posture was awful before I started making simple adjustments. The articles he gave me were from the Mayo Clinic, so I imagine you can Google them. I have all my scans and get my 13th dosage on St. Patrick's Day! I hope you were able to get some much needed sleep and that the withdrawal symptoms are beginning to ease up.
Take Care!
Terrie
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- March 11, 2015 at 12:31 pm
Yah for Keytruda! I asked my oncolgist when I would get a PET since I haven't had one since March of 2013. He said he wouldn't do it until my CT scans and Brain MRI showed no evidence of disease. In general, are you feeling better? Has the choking problem resolved? My spine and hip are messed up but have remained stable since surgery in Oct 2013. The physical therapist at NIH taught me how to find "my neutral spine". It takes lots of practice but really alleviates pressure and pain. My posture was awful before I started making simple adjustments. The articles he gave me were from the Mayo Clinic, so I imagine you can Google them. I have all my scans and get my 13th dosage on St. Patrick's Day! I hope you were able to get some much needed sleep and that the withdrawal symptoms are beginning to ease up.
Take Care!
Terrie
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- March 11, 2015 at 12:53 pm
Yeah in general I'm feeling lots better. I usually only choke now when I lay the recliner all the way back and try to sleep. The fluid sometimes build in the throat when I do that thus I choke. Otherwise I'm eating good although sometimes I get a bad stomach issue. Although I eat quite a bit I still continue to lose weight so not sure about thst. They say I have plenty of digestive enzymes so I dunno. I walk with a cane but only about ten minutes at a time cause then my hip starts hurting and they said to not push it if I get a pain. I assume it must be some fracture in my hip. So yeah I think I'm getting better but a long way to go.
Artie
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- March 11, 2015 at 12:53 pm
Yeah in general I'm feeling lots better. I usually only choke now when I lay the recliner all the way back and try to sleep. The fluid sometimes build in the throat when I do that thus I choke. Otherwise I'm eating good although sometimes I get a bad stomach issue. Although I eat quite a bit I still continue to lose weight so not sure about thst. They say I have plenty of digestive enzymes so I dunno. I walk with a cane but only about ten minutes at a time cause then my hip starts hurting and they said to not push it if I get a pain. I assume it must be some fracture in my hip. So yeah I think I'm getting better but a long way to go.
Artie
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- March 11, 2015 at 12:53 pm
Yeah in general I'm feeling lots better. I usually only choke now when I lay the recliner all the way back and try to sleep. The fluid sometimes build in the throat when I do that thus I choke. Otherwise I'm eating good although sometimes I get a bad stomach issue. Although I eat quite a bit I still continue to lose weight so not sure about thst. They say I have plenty of digestive enzymes so I dunno. I walk with a cane but only about ten minutes at a time cause then my hip starts hurting and they said to not push it if I get a pain. I assume it must be some fracture in my hip. So yeah I think I'm getting better but a long way to go.
Artie
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