calling all duragesic/fentanyl patch users

[Kimchi]

I am going on vacation next week and hope to be able to go to the beach. Has any one else here that use this med been to the beach w/ it? How did it do in the sand?

[PurpleKitty]

I went to the beach regularly when I was using the patch. I never had any problems with it. I always covered mine with a tegaderm covering because they tended to fall off me. I sweat a lot because I have RSD. I'm sure you are aware that you MUST not become over-heated or be in the direct sunlight. That means you need to be under an umbrella and or have the area the patch is on covered by clothing so the sun can't shine directly on it. If you or the patch becomes over-heated then the medication can be absorbed too quickly causing you to over-dose. Even a really hot shower or hot-tub can cause this to happen. I didn't believe my Dr until I started taking really hot showers to help with joint pain and then 30 minutes later I'd get really sick to my stomach, tired and feel really weird. When I told the Dr this he explained that when the temp goes up it increases blood flow and causes a faster rate of absorption.

Have a great trip and stay cool!! Relax and enjoy yourself :)

[Kimchi]

Thanks for the response. I love the beach and was worried I would not be able to go. Did you use the duragesic or fentynl? I have the fentyny but I have some of the bioclusive dressing from the duragesic people which really covers the patch well. Did you happend to get in the water? Sorry for all the quesstions

[PurpleKitty]

I used Duragesic, but I didn't like the bio-occlusive dressing. I used Tega-derm brand and found it to be far superior. I did go in the water, swam, whatever I wanted, I just didn't get over-heated. I never swam for very long though, and always checked to be sure that my patch hadn't moved or water hadn't gotten under it. I called Duragesic and asked them about it and they told me that these patches were developed for people in severe end-stage cancer pain so the research on physical activity is just beginning. Their advice was to use common sense, don't let streams of water or waves hit it repeatedly, don't keep it submerged for long periods of time and change it if you have any doubt. I always had plenty of extra patches so I changed mine every 2 days instead of 3 days.

[Kimchi]

I don't have the luxury of xtra patches. My Dr fills mine every 30 days to the penny and it seems that I have had some trouble w/ them sticking and I am now short a patch..... again. The patch helps my pain but they are such a pain in the butt and the tape really hurts to pull off, plus now I am getting a rash where they were last. Where did you buy this other tape?

[IC SARAH-CPP]

Kimchi,
Grr, your pain doctor makes me mad!! My doctor told me EVERY SINGLE ONE OF HIS PATIENTS had problems with patches sticking so he knew he had to order the patches one time early sometimes. DId you call him and they said there was nothing they could do? What are you going to do when you are out of the patches? Go in to w/d? This sucks.
And I dont get WHY you cant see YOUR doctor? That is the most messed up system I have ever heard of.I would call and DEMAND an appt with HIM. Not a nurse or whoever but your doctor. I had to have one of my docs call my pain doc and I think it ended up helping my case. He said she said very nice things about me and it just kinda backed my case up.
i would just be careful about overheating in the sun. I also got sick when I went under a heating pad.
Have Fun!
Sarah

[PurpleKitty]

Tega-derm is a brand name. You can buy them at any drug store, but I found a medical supply place and they were 1/2 the price! I used them every time I applied a patch and never had a problem with them coming off. I think I told you before that I have RSD and sweat alot from them. I also found that the best place to put them was on my upper arm, biceps. I switched arms every time and never got a rash. If I put them on my chest, back, buttock or abdomen I got a rash every single time. I also used a hydrocortisone cream on the sight after I removed the patch for about 24 hrs and any irritation cleared right up.

I can't believe you can't get extra patches. My Dr increased my prescription dosage to 2 patches at one point, but I only used them for one week so I have 3 months worth of extra patches. My Dr is aware that I have them but he can't take them back, give them to other patients etc. I guess the law is pretty strict on that. What a waste of money! They are still sealed and everything. I loved the pain control of the patch but couldn't tolerate the side effects from them. He told me Tues he wants me to try them again, I am considering it.

He is very lenient, too lenient I think when it comes to giving pain meds. He'll give me anything I want, literally and as much as I want. I finally had to tell him I didn't want any more meds. I have a stock pile already that I don't use. Tell your Dr that your patches have fallen off, this is a very common and well known problem. He should take that into account and be able to get you at least one or two extra. What will you do now that you are short? Go through withdrawls for 3 days till you get more patches? Not a good thing. Good luck, let me know how it goes.

[Kimchi]

I am very frustrated w/ this clinic. I called the other day and insisted and got nowhere. I am trying to get in to see another pain clinic but the front desk gal told me he does not like to rx Oxycontin and other durgs that. I am on the verge of going to my PCP to have her help me come off of them. They are causing me so much stress and we all know what stress can do! Dr. Evans in NC made a recommendation that the patch be changed to oxycontin or methadone but they seem oblivious. I bet if I had a back or neck problem, I would not have any problems. Hey, when you were on the patch, did you have weird images and thoughts flash thru your brain? I get them all the time now. I don't like them.

[Kimchi]

well, I am going on my vaca and try not to worry about it. Then when I get back, I am going to start calling again. My uro wants me on the oxy or methadone. If I can't get in to see him, I will call the nurse for my f/u appt and see if she will bump it up a few days. I am also trying to get into a new pain clinic, so who knows, maybe that will pan out too. My hubby thinks this will all come together after vaca.

[IC SARAH-CPP]

Kimchi,
I dont know what to say. I am upset at how you are being treated and I dont think it is okay. I had some weird symptoms with the patch when I was on it but I dont think I had any flashes or anything like that. I would be furious if I had to see a nurse and not my doctor when I went to my appts. I wish Dr. Evans could treat your pain! Can you fill the scripts in his state or is that totally illegal?
I would go on vaca and enjoy it. Things will at least not be worst when you get back!! Have fun with hubby and your precious daughter.
Bailey- My pain doc is like that too. I mean, he will let me kinda suggest what I feel will work best for me. He said every person has their own doctor inside them, it is his job to help them find it! He is responsible though, he wouldnt just give me anything or hurt me in any way.
Have fun Kimchi!
Sarah

[Kimchi]

Thanks Sarah, I am so glad you have such a great pain Dr. It makes all the difference in the world to IC patients. Dr. Evans would treat my pain but he can't from NC. I am trying to remain positive. At least I have something to take even if it's crappy. This clinic I go to is a dog clinic. It's dirty and it full of all sorts of weird looking folk. The bathrooms have never had soap in them to wash my hands. I took my daughter w/ me last time and there was a soilded baby diaper thrown down right in front of the door. I grin and bear it though b/c it's a means to an end. This other clinic just opened and I hope this Dr. yill treat me. I am going to take all my info including Dr. Brookoff's transcript!

[IC SARAH-CPP]

I think the most important thing is to stay hopeful and positive, just like you are! I feel so much anguish when women come on here and they have just given up because they have been shut down so many times. I know because I felt the same way. I suffered for 4 long years before I got good doctors, so I know it does suck.
You are right, you are lucky you do have something to take. It is funny because the pain clinic I go to is housed in a chemical and dependency unit at Kaiser! It is very very very disgusting in there. I dont mean to sound rude or snobby but I have never in my life been around things like that before. My doctor is the only pain doctor for Kaiser in the area so he treats pain patients and people who are addicted. He has told me numerous times that is why he is so........lenient with me. Because he works so closely in addiction and knows the signs and attitudes of people who are addicted.
I will sound terrible when I say this but when I go in to the clinic I feel like shouting : I AM HERE FOR THE PAIN CLINIC!! I know that is dumb but I hate that everyone looks at me and thinks I am addicted to meds.
So I know how you feel! I always leave and SCRUB my hands!
Have fun on your trip!
Sarah