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    Old 08-05-2008, 07:58 AM   #1
    Clerklady
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    Fentnyl patch, need wisdom from all

    Hello all,
    I read here everyday to gain knowledge on how to help my mother.
    Long story short, she has battled lung cancer, osteoporosis w/compression fractures, rheumatoid arthritis she is 76. Her pain was out of control with Loratab 5-500 as many as 8 per day, she weighs 88#, we took her to the Dr and they put her in the hospital for monitoring for the patch. Which is fentanyl 25 micrograms change every 72 hours.

    My question is when do the side effects of insomnia (sleeps all day) at night, wild dreams (she tells us stories that she thinks happens when it is dreams) crazy wild eyes, she fights with me, angry, agitated. I know that this is not the way my mom is but if this keeps up she is in danger of hurting herself. She fell the other day while chasing chickens, she is not eating, she
    is unaware of her surroundings, so to speak. She keeps scratching her patches off. She is allowed 3 loratab for breakthrough pain and takes them way before it is time. Thank God I only give her three.

    Is this normal, she has been on it sense July 29. I know it will take some time but how much time usually do these side effect subside? Sorry for the spelling

    Thanks for any help and God bless you all, Denise

    Last edited by Clerklady; 08-05-2008 at 08:00 AM.

     
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    Old 08-05-2008, 08:20 AM   #2
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    Re: Fentnyl patch, need wisdom from all

    Hello....Sorry to hear about your mother. I have used the patch two different times now, and have quite a bit of experience with it. I last changed from it in the late spring due to the heat of summer and my sweating. I plan on switching back in the Fall, hopefully.

    The patch is one of the strongest meds out there because it's fentanyl. It is 100 x more potent than morphine. Some of the side effects your describing are normal, especially the ones of vivid dreams, itching, and sleep patterns. In fact, these are the case with all narcotics, not just fentanyl. However, in general terms, the stronger the med, the more likely these are to occur. It takes your body a while to adjust. Although it seems like a good while to you, in reality, it hasn't. It may take her a couple weeks to a month to stabilize. The last thing that will stabilize will be her sleep patterns. Those on pain meds can often have much different sleep patterns.

    The "angry, agitated" part is also somewhat normal. This may be due to the meds and or her pain. Normally, those things occur when one doesn't feel well...Many here can attest to that! Also, she may be going through a tad bit of hydrocodone withdrawal since she's been abruptly cut back from 8 per day to three. I don't care what Docs say about how pain meds are supposed to "replace" each other....They don't, in most cases. This will subside fairly quickly, however, since Lortab isn't that strong.

    Re: the "itching", this is also normal....Goes for all narcotics. You may ask the Doc if you can give her some type of antihistimine on a daily basis...This will help quite a bit. Question for you...When she scratches her patch off, do you reapply it, or put a new one on? It can be tough to "re-apply"....Even with tape...I don't think they completely seal to the skin again. You may want to talk to the Doc about getting some "extras" each month, just in case.

    I'm a little surprised that she is only permitted 3 per day for BT pain...I guess it's because her body weight is so low. Her Doc probably doesn't want her to OD since she's just been put on the patch. Can't argue with that. However, if her pain continues, you may need to request either more Lortabs, or a stronger BT med like Percocet. But, her body will need time to adjust first.

    Hope all of this helps. Let me know if I can help further. Take care, and I hope things improve with your mom.

    Ex

    Last edited by Executor; 08-05-2008 at 08:24 AM.

     
    Old 08-05-2008, 08:50 AM   #3
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    Re: Fentnyl patch, need wisdom from all

    Thanks Ex,

    I know all you have said is very true, the itching especially. The first change was Saturday evening and I noticed the patch was gone, so I applied a new one (time to change anyway), yesterday I notice she was scratching in the area where the new one was, I found it when I helped her change her shirt, I reapplied it with a bandage, and rubbed her down with lotion. Would benedryl help with the itching?? I know it makes her tired but we have in the past given it to her for sleep issues. She also takes valium as many a day as she needs; I put two in her med's for afternoon and evenings. She is in no pain really she says that she has some areas that kind of feel funny. Her left lung is where the cancer was and it has filled with fluid, and is not working anymore, she is also on full time O2, so I am sure that can be some what painful on top of the compression fractures. I was also wondering about the withdrawal symptoms with the loratab although not very strong she was taking so many without relief. She is terminal and we are waiting to get out referral to hospice, but in the meantime I have come to the experts which is you.

    I read all you post nearly everyday and have gained much knowledge for you. Thank you so much for replying. Please know I am praying for you all. Denise

     
    Old 08-05-2008, 11:08 AM   #4
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    Re: Fentnyl patch, need wisdom from all

    Hi Denise, I just wanted to say welcome and to give you some of my experience with both pain meds and taking care of an elderly family member with pain issues. I myself have chronic pain, but do not use the Fent patch. But Ex already gave you excellent info about that. Just a side note. Benedryl at bed-time might help not only the itching, but to get her back on a regular schedule of sleeping at night.

    I took care of both my mom and her sister for about 4 years. My mom had Alzheimer's and my aunt who was older was quite sharp mentally, but had medical issues. With both of them, the hospital and any type of narcotic medication had a tendency to make them very confused and agitated. Even my aunt, who was sharp as a tack. Put her in a hospital setting, even without pain meds and she was off her nut the entire time. Add in pain meds, and Oh boy! It is very common for the elderly to have very strong reactions to meds. (My mom was 77 and my aunt was 84 when I moved in)

    We had to have sitters for both of them when they were in the hospital because they would have harmed themselves. And my husband and I ended up selling our home and moving in with them, because they could not remember when to take meds, nor were they eating properly or bathing often enough, etc. Is your mom living with you?

    I just wanted to let you know that I fully understand what you are going through. If I can be of any help, at any time, please just ask. And don't forget to take care of yourself. I know it's easier said than done, but there are resources out there to help. God Bless, CMP/MM

     
    Old 08-05-2008, 11:11 AM   #5
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    Re: Fentnyl patch, need wisdom from all

    Hi Clerk,

    I'm Shay. I was on the Duragesic patches for years. My highest does was 200 mcg ( I wore 2 patches of the 100 mcg dose). Even on that high of a dose of Duragesic, my pain really wasn't that well controlled. So, I switched to another medication that has worked wonders for me.

    Anyway, my point I was getting to, is that I'm a bit surprised your Mother's doc put her on the Duragesic at such a low body weight. It's not recommended for anybody that weighs under 118 pounds. It evens says that in the prescribing info that comes inside of the Duragesic boxes.

    That may be why she is acting a bit strange because it's such a potent med (actually, the most potent med to date) and with her extremely low body weight, she is getting quite a bit of fentanyl in her system, eventhough the dose is low.

    Also, when I was on Duragesic, I did experince some of the things she is.....erractic sleep paterns, extremely vivid and wild dreams (very real in intensity) and very irratable. Although, most of the crabbiness was due to my pain and not feeling well, at all.

    I just thought I would give you some feedback on my experiences with the Duragesic patch. Also, you can buy covers to put over the patch. I used Tegaderm (you can get them at any pharmacy). If your Mother is on the brand name Duragesic, she can get the Johnson & Johnson bioclusive covers for free. You would just need to contact Janseen Pharmaceuticals (the maker of Duragesic).

    They will ask you a few questions like.. Have you tried other means to keep the patch on? How long have you tried any other methods? They will also ask for info about your RX and pharmacy phone number to make sure you do indeed have the brand name Duragesic. They will not send you the bioclusive covers if you are using generic forms of the Duragesic patch.

    I hoped this has helped. Take care and bye for now.

    Shay

     
    Old 08-05-2008, 11:52 AM   #6
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    Re: Fentnyl patch, need wisdom from all

    Thanks Shay and Cmpgirl for your insights. They are very valuable to me.
    I was surprised to when they mentioned the patch and I can’t recall what brand it is but I will look, do you think these side effects will subside in time to is it just way to strong for her??

    I have to keep her med’s out of her reach that is for sure. But the
    Valium she takes is at her disposal as is should be, but everything else she has no control of. She can’t and has not for months been able to keep her pills straight even if I put in days at a time so this works, she takes her evening med’s and then has her next days on the coffee maker.

    She has been in much pain from 5 compression fractures and 4 cracked ribs for the last 5 months. Her RA has not helped much either, but the prednisone has helped also, her blood pressure is high I think from the pain issue, but the patch is controlling it, and the BT med’s I do not think she needs but to keep her from withdrawls, I plan on if I can to cut some in half and see if we can’t wean her off of those. In doing that I am in hopes her appetite will come back but I doubt it. Her last radiation treatment was in Feb and chemo in Dec, I do not see it ever coming back, she forces herself to eat what I manage to get down her, oatmeal, boost and maybe a few bites of supper.

    Cmpgirl, no she lives a few blocks from me, I work full time and take her to all her appointments, I put her paper every morning on her table before she wakes, take her supper, and tuck her in every night, there will be a day when I will have to stay with her but for now I do not. I have young kids and a husband, that works full time and is a full time pastor so our days are very full.

    She is a very, very proud lady and is very humbled by all of this, especially when I have to tell her to change her clothes after A bathroom accident, although she wears “pampers” as she calls them. I try and make sure she eats, and showers and has clean clothes on everyday. But that is a challenge.

    I try to think of myself and my wonderful family and I am so blessed that God choose me to take care of my Mom and My MIL is in our local nursing home, soon to go be with our Lord. The hardest part is allowing her to be home and carrying out that wish, she is very close to full time care, but I do not want to prolong her life for me and her grandkids, but I have left that God’s hands. My siblings help when they can but they do not live in the same town, I hate to burden the one’s who can’t handle the burden so to speak. I will try the benedryl at bedtime again and see if that helps. Thanks to you both, God bless. Denise

    Last edited by Clerklady; 08-05-2008 at 11:53 AM.

     
    Old 08-05-2008, 12:18 PM   #7
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    Re: Fentnyl patch, need wisdom from all

    Denise, You might want to keep track of her Valium. A lot of docs don't explain that it is a highly addictive med with a very difficult withdrawl. If she is forgetting to take it some days or takes too much on others, you might have a serious problem. Even if it is a low dose, all it would take is a few too many, mixed with a few too many pain meds. I don't mean to scare you. It's just that I know from experience that some docs just never tell you these things. They just dole them out like tic-tacs. If you look up benzodiazapine in a med dictionary, it will tell you a lot about them.

    There are other long acting meds that are taken orally, once, twice or sometimes 3 times a day. As the others mentioned, Fent is pretty strong stuff, so maybe a little less potent med would be better for her. It would be best to find out early, so that she doesn't have to deal with the level of withdrawl that she would later. It can still happen, even when switching immediately to a different opiate/opioid. It probably wouldn't hurt to discuss it with her doc.

    Please keep posting. This is such a great place for support and advice. I will keep you and your family in my prayers. God Bless, CMP/MM

     
    Old 08-05-2008, 03:41 PM   #8
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    Re: Fentnyl patch, need wisdom from all

    I feel bad that you are having to endure all of these issues but you must be a very strong, caring woman to take care of your mother like this. Alot of these side effects will probably subside in the next week or two as the level of fentanyl levels out. You really need to ensure that she keeps the patch on because if she keeps taking it off, she will go through withdrawal. There are many things that you can put over the patch to make sure it stays on. I think the best would be the bioclusive cover from Johnson & Johnson (you can get for free if she is on Duragesic brand).

    Is the itching problem from a rash underneath the patch, or is the itching all over her body? You can try Benedril(probably pretty sedating), or something like Claritin which you can get over the counter. If she is getting a rash underneath the patch then you can try getting OTC corticosteroid cream and rub into the skin where you will plac the patch. Wait at least an hour(you need to plan ahead on this). Then place the patch on the skin where you rubbed the cream into.

    Was she eating very much before she was put on the patch? Is the problem nausea or just lack of appetite? There are medications the doctor could put her on if she is nauseas, including something they give cancer patients called MARINOL(prescription with THC as the active ingredient). It helps to really boost a persons appetite but does not get them high. I am sure she would feel better if she was eating and getting the proper nutrients.

    I would also be very cautious with the Xanax because they could cause an OD with the pain meds if taking too many(more than prescribed). She could also go through withdrawal if not taking them evenly spaced through the day. I would ask the doc about Klonopin which is still an anti-anxiety med but long acting and does not have to be taken as often. Keep us posted.

    brian

    Last edited by brianpain33; 08-05-2008 at 03:46 PM.

     
    Old 08-05-2008, 07:18 PM   #9
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    Re: Fentnyl patch, need wisdom from all

    Quote:
    Originally Posted by Clerklady View Post
    Thanks Ex,

    I know all you have said is very true, the itching especially. The first change was Saturday evening and I noticed the patch was gone, so I applied a new one (time to change anyway), yesterday I notice she was scratching in the area where the new one was, I found it when I helped her change her shirt, I reapplied it with a bandage, and rubbed her down with lotion. Would benedryl help with the itching??
    Not sure if Benedryl would help or not. I would try something like Claritin or Tavist D, or some other OTC anti-histimine.

    Quote:
    She also takes valium as many a day as she needs; I put two in her med's for afternoon and evenings.
    The "cocktail" effect of the valium with the fent could be the sleeping issue. Both are very sedative in nature. Please be careful with with the combination of the two.

    Quote:
    She is terminal and we are waiting to get out referral to hospice, but in the meantime I have come to the experts which is you.
    Sorry to hear about this. When hospice takes over, please make sure whatever meds they give her are coordinated with what she is on now. Hopefully, the Doc will talk with them.

    Quote:
    I read all you post nearly everyday and have gained much knowledge for you. Thank you so much for replying.
    Thanks for the kind words....Glad I could help.

    Take care,

    Ex

     
    Old 08-06-2008, 04:56 AM   #10
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    Re: Fentnyl patch, need wisdom from all

    Denise,

    I don't know much about the fentanyl patches, but have a suggestion for the itching if it's all over. Zyrtec controls itching almost as well as benadryl but without a lot of the sedation - also is a once a day tablet available OTC.

    Tigg.

     
    Old 08-06-2008, 07:24 AM   #11
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    Re: Fentnyl patch, need wisdom from all

    Hi Denise,

    It's Shay, again. I just thought I would mention something else. I see you said you are waiting for the hospice referral. While you are waiting for that to start, you could also check out respite care. Basically, they help out around the house and can stay with your Mother for short periods of time so you can go somewhere else if you need to....like the store, church, or whatever errands or "break times" you may need.

    Have you looked into this? My Aunt died several years ago, and before hospice took over, my Uncle had the respite care team come out a few times a week so he could do some things he needed to do. I really admire your strength and integrity to carry out your Mother's wishes to be taken care of at home. I would ABSOULTELY do the same thing for either one of my parents, as well.

    God Bless You, Denise, and your Mother and family. Take care and bye for now.

    Shay

     
    Old 08-06-2008, 08:01 AM   #12
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    Re: Fentnyl patch, need wisdom from all

    First off thanks to all who responded, I feel so blessed.
    I will try to answer some questions with out writing a book. It has been such a long, long road.

    Yes she does itch all over, no rash under the patch. The brand is mylatin (sp), I know I have read
    Something on here about that brand name and will see if I can not look today of more information.
    Mon says that the patch is not controlling her pain, but I can not see how that is happening other than
    When I put the patch back on it did not seal.
    She took all of pain meds for breakthrough which she is prescribed three a Morning, noon and bedtime.
    and two valium yesterday. The only time I let her do the valium on her own is at night if she wakes and canít sleep, she was talking a pain pill during those times and I knew that was wrong sense she was not in any pain, so I have tried to let her take a valium, she is to take 2 a day as needed, but is he take any she only takes on and that is all. She was up until last week taking them as she needed them, so there probably is withdrawal going on with those also. I did not realize the danger in those other than the addiction which I was not worried about sense her life is coming to a close. I will be very careful with those. She also take Lexapro at night for her depression, that should help with the anxiety, so I always knew she was taking them because of the withdrawal symptoms that she was having a few months ago. What a mess.

    Her loss of appetite came in July when she found out all of this stuff the RA first then the spot on her lung; it was September before I could talk her into a biopsy. Then by October we had a breathing test to see if she could withstand the surgery and they found this intertissual lung disease, so they opted to do the chemo and radiation which started in December. We got her RA under control and they started Chemo when she had phenomia, smart huh? So after a week of chemo she went in the hospital with and UTI and has never been the same. 38 radiation treatments later, she was better then, then now and that was Feb. So all of this has
    just snowballed until now and quite frankly she is a mess. She is due for another CAT scan of her chest Friday and I am not sure if she is going to make the 45 minute trip to the hospital.

    I changed the patch last night and put it on her back and put a band aid over it, gave her a benadryl in her night meds, she had slept all afternoon, she did eat a little supper, went back and 8:30 she was in her chair asleep, got her to bed. When the morning and her back door was open that is always a signal she is up, she was not, stripped down to nothing, laying in bed asleep, with her oxygen out of her nose. I covered her up, laid out some clothes, put her O2 back in her nose, kissed her and came to work. All of this behavior is so new to me, it is scary to she her this way, she would have died if she knew how she was this morning in bed exposed all crazy talking. She snapped at my daughter yesterday, she did not feel bad when in the past she would not have even thought of speaking to her that way. Thank you to all. All are in my prayers. Denise

     
    Old 08-06-2008, 08:21 AM   #13
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    Re: Fentnyl patch, need wisdom from all

    Sounds like she's on the Mylan patch. Please do some research on this as the feedback has not been good. Next Rx, I would try to switch to brand (Duragesic), Sandoz, or Watson. If you want the brand, ask your Doc to write "DAW", or dispense as written" on the script...."medically necessary" also works. The brands I mentioned above are much more consistent than Mylan. They also stick better. Sandoz and Watson are generics and don't require any special notes.

    Explain to your Doc @ the next visit that you've researched Mylan and the feedback isn't good. They are the drug of choice @ many pharmacies because they are so cheap. In order to find the others, you may need to either ask them to specifically order them, or call around to find the brands. If you ask them to order, they usually will, but you'll need to ensure them that you will fill it there....And give them about a week's notice. Try to find a pharmacist that you really like and see if that person can work with you.

    I'm not saying this will cure all this issues, but will certainly help. Having her on the Mylans isn't making any of this any easier, that's for sure.

    Regards,

    Ex

    Last edited by Executor; 08-06-2008 at 08:22 AM.

     
    Old 08-06-2008, 09:53 AM   #14
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    Re: Fentnyl patch, need wisdom from all

    Thanks Ex,

    I am so worried, I do not like this patch at all for her. I do not understand why
    this Dr did it, without trying some thing a little less. I beleive it is to much for her,
    her weight is low, she really can't cook or clean for herself. WE go Friday to her oncologist for the CAt scan and them Monday to get the rsults and his recommendation. Her PCP is only a nurse practitioner, she works under this MD who did some test and put her on the patch, so he is new to her and her case because he does not take the time to read her file and all she has been through the last year.

    Do you think with what you know about her that I should have her taken off the patch and on to some long acting pain med? I feel in my heart it will be less of a worry and better for her all the way around. What do ya think?

    I am so sorry for all my typo's on the other post hopefully you can get throught it, but I am sorry. God Bless you all, Denise

     
    Old 08-06-2008, 10:15 AM   #15
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    Re: Fentnyl patch, need wisdom from all

    It sounds like things aren't going so well, and I hope you understand that I can only go by what you write. I am not a Dr. and can only offer my common sense opinion (if I have some common sense..LOL).

    I think the Doc was sound in his decision to use the patch because it was originally designed for people just like your mom... Sedentary in nature...Put it on, and don't change for a couple of days. It also delivers precise med each hour and is probably the most consistent of the LA meds out there. Given it's potency and great pain fighting effects, it was a good choice in that regard as well. However, he did miss on the weight requirement though.

    Given everything, it's probably prudent that you ask to discuss other options, especially given the weight issue. The reason there is a weight requirement is because the fentanyl resides in the fat tissues. When you have low body weight, it won't work as well. Throw in your exposure to Mylan, and this is why you've got issues. I would run this all by the Doc.

    I guess the million dollar question then becomes what to use? You basically have a couple of options....Methadone, Oxycontin, long acting morphine, or Opana.

    Methadone really isn't appropriate for your mom's condition, so I would be reluctant to try it. It is very cheap, however, and works for those who don't have insurance.

    OC or LA morphine (Avinza, MsContin, or Kadian) would be your best bet. All work pretty well and come in pill form. OC is every 12 hours, although many use it 3 X day. MsContin and Kadian are also 12 hours. Avinza is 24 hour. This is what I take. It doesn't last a full 24, but comes close. I take it 2 X day and find it to be very good. The good thing about morphine in a pill form is that there is no real "high" or other side effects...Works well for pain. OC works well, but can cause some excitement or euphoric feelings in some patients. Not a big deal really. I don't know much about Opana, but some have not reported good things on this board. It's a fairly new drug that is expensive. Thus, I'd be reluctant to try it given your issues thus far....She really needs to improve and move forward, hence, I'd be more willing to try a more widespread, traditional med.

    So, to answer your question, you have a lot to think about. Fundamentally speaking, if she is scratching her patches off and having other bad side effects, I think I would request a change of venue...Or, at least discuss it. After all, the patch can't work if she takes it off. Then, you have the start up issues & etc when putting a new one on. You'd also need a plentiful supply of "extras" by your Doc. Some may not feel comfortable with this.

    Hope this helps and I haven't confused you. Take care, and good luck.

    Regards,

    Ex

    Last edited by Executor; 08-06-2008 at 10:18 AM.

     
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