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Medical Forum / Diseases and Disorders / Arthritis / July 2004pain specialist and new pain treatmen (duragesic patch) for me
Hi all Today is day 8 of the pain patch, duragesic 25 mcg/hr and let me tell you that it has been an adventure. Prior to the patch I was taking 7-8 total narco 10/500mg from what I have been reading on the boards after searching this seems kinda high - is it? I know the pain specialist and pharmacist were concerned that I not take more then 4grams of tylenol a day. I am taking 3-4 (1/2 pill doses of the 10/500) for breakthrough pain each day so far. So, the first day I was so wiped out that I slept the entire day except for a few hours. THank you God that I had the sense to wait until my husband was home all day to start this new drug!! I was in horrible pain and my new pain specialist wanted me to avoid if I could taking the Narco so we could test the effectiveness of the new drug. I did the best I could on the first day but on the second in tears and a pain level of 9+ all day I finally took the first dose of narco for pain- took total of 2 that day and did a little better - again took these in 1/2 pill doses. Since then I have still remained in steady pain at high levels, and finding this frustrating. I have faith in my newest specialist (#5 on the speciality list of team) as he has suffered from chronic pain himself and said in our first meeting- not everything works for everyone and we can always go up on the dose of the patch but we have to start at the 25mcg/ hr. He spent a great deal of time with me and let me know that the amount of tylenol I was betting from fast acting opiates was worrisome and the last thing that I needed was liver problems- as I have enough to deal with- AMEN:-) Lupus, Fibro, Reynauls, UMCTD, Sjogrens, Chronic Migraines, IBS, percarditis, chostocondritis (sp) Regarding the new pain specialist approach I liked it but I was very nervous about switching medications. He reassured me as best as he could that we will not leave me in pain and consistent pain relief was the goal instead of the chasing the pain and or peaks and valleys caused by narco. Rhumey- who got a frantic pain filled worried patient call- took time to speak to nurse about the worries I had and please told me not to worry that he knows I will do great on patch- he is also great. His nurse is beyond the best I have ever worked with and she always makes time to help and make you feel better emotionally as well. The pain specialist says, we will approach this pain symdrom and chronic pain in mutlitple ways to improve the quality of my life. My God I cannot even imagine what not being in pain feels like anymore. It has been so many years. Any way at the instute for pain they have a pain physcologist, physical therapist, as well as other methods such as massage, chiropractic, accupuncture though don't quote me on the last 3 for certain. He mentioned physical therapy for me maybe twice a week. I am all for whatever works however, I usually do not get out of my house twice a week beyond picking up my daughter from school two blocks away... Besides the fact that I have not seen significant reduction in my pain at this point the other factor that is driving me nuts is that I cannot take my hot baths!:_( I am a major bath person, and usually take 2 a day everyday. One week without my baths and I miss them so much. Can anyone please shed some light on thier own experience with the pain patch? What dose are you at now? What breakthrough meds do you utilize? I am keeping track of the pain along with any activities and breakthrough medication taken to share with doc next visit- this month. Hopefully this will help us get this pain under control/ So, not sure if this is related or not but for months now my skin has been in terrible shape - this we (me the mouse in my pocket and the docs) blame on Lupus, sun, and prednisone but my goodness my skin is covered in acne and I hate it. Now since being on the patch I seem to be getting large cyst like bumps in areas of glands or lymph nodes??? Anyone else seeing this or experienced it before? I hope you all are doing well as can be as for me and my little family we are focusing on what we can do instead of what we (I) cannot and taking it day by day. I look forward to your replies. Nicole C. Hi - The first 36 hours I was on the patch were awfully painful. My doctor told me I could use my old med - vicodin - for breakthrough pain but didn't give me parameters so I was toughing it out. A phone call the next day resolved that situation and once my body had adjusted to the new med, I was eventually moved up to a dose of 75. It takes about 17 hours to get into your system the first time. I wish someone would have told me that ahead of time. Cause I'm telling you, when I woke up that first am after I put the patch on around 5pm the night before ---- man, was I dying! But that all settled down in time and it's the best pain control I've ever had. After about 3 months she gave me Actiq, a lollypop type medicine which is the same as the patch for breakthrough. That works really great. I still used vicoden until I got used to the actiq because in the beginning it made me a little loopy. I really fought my doctor on using the patch. Vicoden had worked so well for me and I was really afraid to try something new and have it not work or have side effects. Once I started it, I was so relieved not to have the mood swings that came with the ups and downs of 4 hour meds. My temper is gone and my family is a lot happier. Even my doctor told me I seem a lot calmer. She said I was always jittery on things she had tried before. The patch and I are just a good match. I will say this - I put the new patches on a bit early and leave the old ones on a bit longer so I don't have to wait for the absorption. By a bit early I mean 3-6 hours, especially if I'm going to be out when the time comes. I have to keep track on the calendar when it's time to change them when I'm not in a flare or such because they work so good I forget it's time to change them. I got some flu like symptoms a few times when I went too long. don't do that anymore! Are you having any trouble getting them to stay on? I did until my doctor told me to put them on my hips! Sort of side hips. I just alternate sides and no problems. Hope this helps! Feel free to write me if you have any questions.  SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry > Hi all > [quoted text clipped - 82 lines] > I look forward to your replies. > Nicole C. {{{{{Nicole}}}}} DeeTee ________________________________ DeeTee and Bob Taggart http://www.marykay.com/dtaggart3 http://mysite.verizon.net/vze8fwov/ ________________________________ > Hi all > [quoted text clipped - 82 lines] > I look forward to your replies. > Nicole C. (((((((((Nicole)))))))))) I have no answers, but you sound like you could use some hugs SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare (((Nicole))) donnah > Hi all > [quoted text clipped - 82 lines] > I look forward to your replies. > Nicole C. > Today is day 8 of the pain patch, duragesic 25 mcg/hr and let me > tell you that it has been an adventure. Prior to the patch I was ********snip******** > Can anyone please shed some light on thier own experience with the > pain patch? What dose are you at now? What breakthrough meds do > you utilize? Nicole, my sister has Lupus, Spondy, and several of the other immuno-related diseases you mentioned and has been on these patches for quite some time. She takes Vicodin for breakthrough pain. She says her quality of life completely changed once she got her pain management under control. She swears by them. On a side note, my husband is also using them right now. He was taking quite a bit of Vicodin ES and Percocet following his motorcycle accident and brain surgery. He had a severe whiplash, and after a fainting spell, broke his leg a week ago. He just had surgery on it Friday to put in a plate and screws. The Duragesic 25mcg patch is working great, and he is getting to the point where his breakthrough pain in less and less. One thing to note, his doctor said he could use 2 patches at once if one didn't work for him, and he had to do that the first week. Since then, he only uses one. Also, like Diane mentioned, if his pain is a bit high on day 3, I place the new patch, then after a few hours, remove the old one. TIP: I usually write on the edge of the patch with a black permanent SHARPIE the day, date and time I placed it. Then I can just glance at it to do a quick check to see if it's time to replace. My sister wears hers on the top of her shoulders, but Duane likes them better on the outside of his upper thigh. Good luck. I'm glad it's working for you. Mag Nicole, I hope you are doing better by now. I hope the pain patch is starting to work for you better or that your dr has upped its mgs. I feel for you. I hope you get the pain taken care of so that you can function. You sure do have your plate full with all those chronic problems. I know how it goes with that. I think alot of people that have chronic problems, or weaken immune system has a problem with cysts. Anyways it seems to be that way. Either that or we are more open about talking about that stuff. I would mention the cysts to your dr. It could be a systemic infection type of thing. Or it could just be the heat, and hair follicles etc. It is something to be checked out. I forget Nicole, how old you are, but could you be going into menopause. I know acne seems to be a problem for some then. Just asking. You don't have to answer that, just really something to think about. Thinking of you. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Hi all > [quoted text clipped - 82 lines] > I look forward to your replies. > Nicole C. All I can say is wow, thank you all from the very heart of me. Your kind words and sharing has made a true difference in my day today, and beyond I am sure. Where to start as it seems I have so much to share with you all:-) and thank you again for listening and talking. I am not alone in this. I am 35 nearly 36 and although premenopause is probably a possibility I know the Lupus will and seems to like to mess with my menses this happened before where I went three months. Well, yesterday my monthly visitor decided to pay a visit so maybe I can get that part of my system working again. I saw the rhumey on Friday and we discussed all issues and covered the skin problems I have been having, of main concern to him was the large hard cyst or lumps I have under my arms, thighs, pelvis area surrounding you guessed lymph nodes or glands. He does not believe this to be the folice problem as I have that everywhere else and it isn't the same. These are deep lumps and this is GROSS so if you do not like gross do NOT READ THE REST OF THIS PARAGRAPH GROSS, when lanced under my arm we had some really digusting ick/puss. So, we will see where we go from here? A little worried for sure as I know it is something its just a matter of what. Doc is pretty concerned about this- though he did not try to freak me out in anyway, and said he thought I might have a gland disease on top of everything else? Why why why why did I not write this down??? The name I know starts with an H, pretty sure anyway and I am going to see derm next week. Did some blood work and UAs to test the old kidneys. I should be able to get some of those test results tomorrow according to the lab so I will let you know on that one. Does anyone know or have experience with this kinda issue? Any help or ideas is so appreciated. I am due to see pain specialist on the 29th but I am wondering if I shouldn't call them this week and ask about other breakthrough meds or upping patch. As I have only seen him once, I do not want to seem like a complainer but to even imagine having my pain below a 5 would be a miracle to me even if for a short time. I appreciate what you all have said about areas to place the patch, I haven't tried the hip yet but next dose. I have tried them recenlty close to my shoulder in the front and they seem to do well there. I am not happy with them on the trunk to hard to keep on. I use first aid tape when needed. I have been wiped out the last few days and haven't been online much - sorry it took me a while to respond and to catch up on posts. (((((((((((hugs to all you wonderful people)))))))))))))))))))))))))))))) Warmly, Nicole C. > Nicole, > [quoted text clipped - 107 lines] > > I look forward to your replies. > > Nicole C. Nicole, Your welcome. i know this is difficult on you. I am trying to be as supportive as I can. If you find out what the h word is, maybe someone will be able to give you a link or something to it so you can check it out for yourself. I hope the RD does wonders with you and helps you out big time. It might be great that you have this cyst problem, because it sounds like you have been having problems with it with the hair follicle one before. So maybe this will be the answer to getting that kind of thing controlled or gone. I hope so. Let us know when you know more ok. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > All I can say is wow, thank you all from the very heart of me. Your > kind words and sharing has made a true difference in my day today, and [quoted text clipped - 165 lines] > > > I look forward to your replies. > > > Nicole C. (((((((((((Nicole))))))))))) I have no answers or advice on the cysts. Fortunately, it does sound like your RD is doing appropriate follow-up. I hope the derm is able to help you with it. Hey, just found something on Google that might be what you have - Hidradenitis Suppurativa - google it, there's lots of info out there. I say go ahead and call your pain specialist if you are having a lot of trouble with break-through pain. Just ask if there is anything else you can do or try for it. You sound less like a drug-seeker if you phrase it that way. Then you can suggest more meds if he doesn't do it. Heck, you wouldn't be going to a pain clinic if you didn't have pain! If nothing else, maybe they'll move up your appointment. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare (((Nicole))) and hugs and love back to you... donnah > All I can say is wow, thank you all from the very heart of me. Your > kind words and sharing has made a true difference in my day today, and [quoted text clipped - 165 lines] > > > I look forward to your replies. > > > Nicole C. I feel I am in good hands with these folks thank you GOD. I spoke to pain specialist office and they are increasing my patches tonight from one to two at 25mcg and still use breakthrough as needed. I spoke to rhumey's office, love them too, and they are checking on my labs and name of possibly gland disease lab called me today and even though they blew my vein (going against my advice on best stick place) they were unable to conduct sed rate due to clotting and no extra vile of serum, so you guessed I have to head over back to the lab. The good news on this is that I got on with derm appt on Friday so maybe we will get some answers. Thank you again to you all for your support and kindness it has meant a great deal to me. Warmly,> > > > Nicole C. |
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