Fentanyl and Exercise,Hot Showers

[steph2323]

Hi everyone. I'm more of a lurker than poster, and I have learned so much here so I figured I would ask you all my questions. I have been a chronic pain patient since 2003. Was rear ended 2 times and have multiple disc problems and nerve damage in legs and arms. I have been on total disability since 2005.I've tried just about everything for the pain, but as you know, it never goes away. I just started Fentanyl about a month ago, and when it kicks in, it is a total miracle for me. I am on the 50 mcg every 3 days,but I think I need to switch to every 2 days because day 3 is getting worse and worse painwise. I have been doing everything that is recommended in regard to proper placement of the patch with a tagaderm patch. But I am still a bit paranoid. I have actually started to do some light yoga(have not been able to do any exercise because the pain that I got afterwords was horrible). My concern is about body temperature. Also, I take warm showers now(hate it) but again, I don't want to heat up too much. Am I being too paranoid about this? Also, I had planned to go to Florida next week,but I cancelled the trip because I am new to this med and again, I was afraid to go. It was to be my first trip in 8 years, but I was just too worried. I see my doc in a couple of weeks and will ask her too,but any feedback here would be helpful. Thanks so much
Stephanie

[Boxerlover]

Hi Stephanie, I have been on the patch since 2003 and yes, it is a life saver. Once titrated to where I needed it I have been stable for years. I was changed from every 72 to every 48 and that made a tons of difference so hopefully your doc will be open to that.

As far as temperature is concerned, all I can tell you is my experience and then with input from others and your doc you can make your decision. I personally have not had any trouble. I have exercised with the patch and quite vigourously where I sweat, a lot. And I do live in FLorida. I have sun bathed with a pool cage, walked on the beach. We have a hot tub, but when I go in the highest temp I will use is about 97 degrees. My husband uses it at 100. That scare me too much. I also take hot baths but I have no idea what temp the water is. I am careful to not let it get too hot by touch. We also go to the Tampa Bay football games and in August and September that stadium is Hot. My patch is always covered by clothes.

Now I would not sun bathe directly with the sun beating down on the patch. I would cover it with a towel or keep going into cool water. I would not get into a really hot bath or hot tub.

You could also call the makers of the patch and talk with someone who can give you exacts. Just google ortho-mcneil janssen. Look up the contact number. They will be able to tell you specifically.

Melissa

[steph2323]

Thanks so much for the very detailed answer Melissa! When I told my doctor that I was going to Florida she said no beach so I know her position on that, but will contact the drug company to ask them specifics related to temperatures of other activities. It makes me feel better to know that you have been able to do some normal things while on it. I really am hoping that this is the answer for me, but was a little bummed that I would have to be so careful while I was just getting some relief finally.
I will be asking her about changing every 48 hours as I do notice a drop off on the third day. I think that she will agree, but even if she doesn't, I will be happy to have a couple of good days a week.
I am hoping that they come out with a long acting fentanyl pill in the future, which would be the best of both worlds. Am I getting greedy now lol?
Thanks again for your most helpful info and I am glad that it is working so well for you too.
Stephanie

[Kathi49]

Hi Steph,

You got a good answer from Melissa. I tried the 12.5 mcg patch and had great difficulty; my body was drinking it all up in one day. So, I had some real problems with it. Anyway, what I think was happening was that I still having some post menopausal hot flashes. So, whether it is internal or external heat, it was drinking it up. And I think it was Pharmacist Steve that told me that but he can correct me if I am wrong. I read further and yep, the core body temperature starts to raise a little before the flash hits. So, MAYBE that was my problem. It is the only thing I can think of because I wasn't exposed to extreme sources of heat other than the daggone flashes. ;) And I always put it on my upper arms. Anyway, the bottom line was...pain relief for one day and forget the rest. BUT...I AM glad it is working well for you and Melissa. :)

[steph2323]

Thanks Kathi. So glad that I started on this med when I am starting with peri menopause. :rolleyes: I would love to have it work for 3 days, but if I only get 1 out of 3, I will still be happy. I just don't want to get too much medicine,that's all.
Stephanie

[spondygurl1]

I have been on Duragesic for almost 5 years. I take the hottest baths I can, I tan (with a small washcloth covering the patch or I take it off it is a change day and put it back on aftr my tanning bed session. I have had 104 degree fevers and even went in a hot tub at the beach. I wear my patch on my upper arm so of course it does not get submerged but I have honestly never had a problem. I weigh 110 and because like you, I began to lose effective pain control the 3rd day,I asked to try every 48 hours and it works out great. I know the drugmakers have two CYA so they print everything possible to absolve themselves should that one unlucky person be the one who can't take hot baths or run fevers. Just try to relax. Wera the patch wher it is not submerged n water and you should be fine on baths/showers. Good luck and I hope your Dr changes your script for every 48 hours. It really makes a differnce,

[steph2323]

Thanks spondygurl. You and the others have put my mind at ease for certain. I have been a bit of a spaz since starting it, but even more so once I felt how well it worked so I didn't want to screw anything up. I know the drug companies want to cover themselves so they don't get sued and I normally don't get this nervous, but with the recent recalls and bad press, I got caught up in all of it. Very glad to have found you all and I feel so much better now. Thanks again
Stephanie

[Boxerlover]

Hey Stephanie, I'm sorry your doc said no beach! I keep mine on low, a little above the bikini line and I wear those tankini's at the beach so it is covered by my suit. If we are not walking we lay under an umbrella. This talk is making me want to go back!! We haven't been to the beach in 2 years. I hope if you get the OK from the drug company and you feel comfortable you can make it down. We love it down here!

Melissa

[steph2323]

Thanks Melissa. I love the beach more than words can say. When doc said no I cancelled in a bit of a panic. If I had on the patch for a longer time, I may have come down anyway(live in pa). Once my body gets adjusted, I'll know what I can and cannot do. This disabilty has already taken over my life, and now it's taking the beach from me too!Lol.
Where are you in Florida? I used to go to Sarasota a lot, and this trip was to West Palm.
Stephanie

[feederband]

I started Fentanyl about a 3 month ago. 25mcg every 3 days...I was taking 4 percs and a morph at night... And still just labored in pain in bed for most of the day for about 6 months after my second disc surgery that failed... Not to mention the sick feeling I had using those drugs...Your right about it being a Miracle and mine also starts to give out on the 3rd day but no where near the pain I use to be in so I just deal with it..

My Cardiologist doesn't like the Idea with all my heart problems..But I told him it was a quality of life issue and I couldn't be in the pain I was for much longer..

On the plus side for now I have lost 25lbs on these things..I need to actually get rid of 20 more...But it also kind of worries me...I never get hungry...As far as Hot baths and showers I have no problems ...Hotter the better..

But I have no side effects except losing weight and 95% pain loss..Its like I'm taking nothing.

[steph2323]

I started Fentanyl about a 3 month ago. 25mcg every 3 days...I was taking 4 percs and a morph at night... And still just labored in pain in bed for most of the day for about 6 months after my second disc surgery that failed... Not to mention the sick feeling I had using those drugs...Your right about it being a Miracle and mine also starts to give out on the 3rd day but no where near the pain I use to be in so I just deal with it..

My Cardiologist doesn't like the Idea with all my heart problems..But I told him it was a quality of life issue and I couldn't be in the pain I was for much longer..

On the plus side for now I have lost 25lbs on these things..I need to actually get rid of 20 more...But it also kind of worries me...I never get hungry...As far as Hot baths and showers I have no problems ...Hotter the better..

But I have no side effects except losing weight and 95% pain loss..Its like I'm taking nothing.


Thanks for sharing your thoughts on this subject and glad it is working well for you. I do understand about the quality of life issue completely. You have to be able to be able to function a little bit with decreased pain. It's just too much to take after a while.

I met with my doc yesterday and she switched the script so I can change every 48 hours so I'm happy and started that today. She said I can take hot showers but still no beach. I'm ok with that if this continues to work so well. The only side effects are the fatigue, which I take adderal for and the nausea, that I have with all pain meds, so I take Tygan for that. Haven't noticed a decrease in appetite because of the Fentanyl, but overall have a decreased appetite from the day I started with all of these meds. Probably because I have spent so much time on the couch and not burning calories, but my weight has not changed:(
Good luck to you
Stephanie

[DiMarie]

Thanks so much for the very detailed answer Melissa! When I told my doctor that I was going to Florida she said no beach so I know her position on that, but will contact the drug company to ask them specifics related to temperatures of other activities. It makes me feel better to know that you have been able to do some normal things while on it. I really am hoping that this is the answer for me, but was a little bummed that I would have to be so careful while I was just getting some relief finally.
I will be asking her about changing every 48 hours as I do notice a drop off on the third day. I think that she will agree, but even if she doesn't, I will be happy to have a couple of good days a week.
I am hoping that they come out with a long acting fentanyl pill in the future, which would be the best of both worlds. Am I getting greedy now lol?
Thanks again for your most helpful info and I am glad that it is working so well for you too.
Stephanie

I never realised the problems with Duregesic until it was too late. I trusted the manufacturer, I trusted the pharmacy and doctors. But, in a heated room with a defective patch a family member received a fatal dose of fetanyl.
When I came home from work it was too late.

I had the coroners report later that stated cause and related the heated room and only on the body were the perscribed doses. The weakness of the design allows an uncontrolled amount to go into the body. All the side effects are they not just relating the amount going in not properly controlled due to outside variables? Then the risk of receiving a faulty leaking patch? The level of fentanyl in the body was consistant with a leak.

I did not believe it, for almost two years until I researched and that educated me about the machine that produces the patches and it is producing 8000 in a batch that fails. There is nowhere on the patch that it says Death is a risk, it says that respiration problems.

The alternative available matrix design prevents this potential for a fatal overdose. There has been two recent multimillion dollar awards against the Manufactures last year but they continue to use the gel resivour. The edges can pull apart and allow too much concentration to enter the body.

It was a tough to accept, I trusted this medication,.
Do a search on the lawsuits and attornies. Why is the form of this discharge allowed to go on?
Why do they not inform the pharmacies of the problem and the hundreds of cases that are filed?

All these families that lost loved ones.....There is no explaining the feeling f choosing a casket for your child or pick out their burial outift.
I trusted, Lord help me I trusted......
If I have to go to Congress FDA or what ever it takes I want this type of discharge removed from the market when they know its faults and still use this design instead of the Matrix.
Nothing will give me back my child, but if another family has to go through this let the manufacture be accountable.

Have a talk with your doctor, pharmacy and read about the lawsuits and losses. It is a shame, they will likely say something like the risk is so small....but it happens and it happened for years and the manufacture still chooses not to fix the problem. How many have to die?

[steph2323]

I never realised the problems with Duregesic until it was too late. I trusted the manufacturer, I trusted the pharmacy and doctors. But, in a heated room with a defective patch a family member received a fatal dose of fetanyl.
When I came home from work it was too late.

I had the coroners report later that stated cause and related the heated room and only on the body were the perscribed doses. The weakness of the design allows an uncontrolled amount to go into the body. All the side effects are they not just relating the amount going in not properly controlled due to outside variables? Then the risk of receiving a faulty leaking patch? The level of fentanyl in the body was consistant with a leak.

I did not believe it, for almost two years until I researched and that educated me about the machine that produces the patches and it is producing 8000 in a batch that fails. There is nowhere on the patch that it says Death is a risk, it says that respiration problems.

The alternative available matrix design prevents this potential for a fatal overdose. There has been two recent multimillion dollar awards against the Manufactures last year but they continue to use the gel resivour. The edges can pull apart and allow too much concentration to enter the body.

It was a tough to accept, I trusted this medication,.
Do a search on the lawsuits and attornies. Why is the form of this discharge allowed to go on?
Why do they not inform the pharmacies of the problem and the hundreds of cases that are filed?

All these families that lost loved ones.....There is no explaining the feeling f choosing a casket for your child or pick out their burial outift.
I trusted, Lord help me I trusted......
If I have to go to Congress FDA or what ever it takes I want this type of discharge removed from the market when they know its faults and still use this design instead of the Matrix.
Nothing will give me back my child, but if another family has to go through this let the manufacture be accountable.

Have a talk with your doctor, pharmacy and read about the lawsuits and losses. It is a shame, they will likely say something like the risk is so small....but it happens and it happened for years and the manufacture still chooses not to fix the problem. How many have to die?

I am so sorry to hear about your child. No one should have to die while trying to get pain relief. I am being very careful and taking all of the precautions very seriously. Did your child have a defective patch or was it because of the heat? Or a combo of both? It's sad to say, but the only way that manufacturers will change the way that these are made to make them safer is by lawsuits so we don't have any more deaths.
Stephanie

[DiMarie]

Stephanie
Thank you for your kind words.
Toxicology was found to be levels consistant with a leaking patch. The coroner in his report noted it was extremly warm in the room.
Something has to be done, if there is a leak it would never be known by the wearer.

[steph2323]

Stephanie
Thank you for your kind words.
Toxicology was found to be levels consistant with a leaking patch. The coroner in his report noted it was extremly warm in the room.
Something has to be done, if there is a leak it would never be known by the wearer.

So you understand why I cancelled my trip to Florida then:) I am going to continue with it and see how it goes, but if there is not signifigant ongoing relief, I will ask to go off of it by summer. Thanks again for the info and keep up the good work of spreading the word.
Stephanie

[DiMarie]

Stephanie,
My dd did take a trip to florida, but not the beach. Unfortunatly it was in Oct and 99* at Epcot and Universal. I kept her with a canapy on a scooter, spray bottle of water, gateraid in a cooler. The only problem I noted was behavioral, she was very anagonistic. As long as we gave her priority, she was OK. If I set restrictons.....Like it is to hot now, lets go to the hotel and take anap until laer, she would flip, which was so unusaual at that time.

She just wanted to keep going and going, that was odd to me. So she sulked big time. Also, she swam at night. The pool was open, and no sun out.

So depending what the trip is for, if the beach, maybe you can change the time of day you will be out in the heat, or the time of the year you are going. Shorter day light and lower heat temps.

Emotionally, everyone needs to get away, just smart choices. Also, if it is time to change your patch can you wait while at the beach? Or leaving the expired one on longer?
I am just thinking out loud....
Blessings,
di

[steph2323]

[QUOTE=DiMarie;321114]Stephanie,
My dd did take a trip to florida, but not the beach. Unfortunatly it was in Oct and 99* at Epcot and Universal. I kept her with a canapy on a scooter, spray bottle of water, gateraid in a cooler. The only problem I noted was behavioral, she was very anagonistic. As long as we gave her priority, she was OK. If I set restrictons.....Like it is to hot now, lets go to the hotel and take anap until laer, she would flip, which was so unusaual at that time.

She just wanted to keep going and going, that was odd to me. So she sulked big time. Also, she swam at night. The pool was open, and no sun out.

So depending what the trip is for, if the beach, maybe you can change the time of day you will be out in the heat, or the time of the year you are going. Shorter day light and lower heat temps.

Emotionally, everyone needs to get away, just smart choices. Also, if it is time to change your patch can you wait while at the beach? Or leaving the expired one on longer?
I am just thinking out loud....
Blessings,
di[/QUOT

Swimming at night sounds good to me! Yes, I know that we all need to get away and it's been 8 years for me so I am desperate. But more desperate for pain relief now. I go back and forth in my mind with this med and I just need to be careful, let it work and see how I do. If I remain too focused on all of the side effects,ect then I'm going to make myself sick that way. Thanks for your response and support.
Stephanie