I Am Being Denied Medication !

[Troy]

On top of my Autonomic problems I suffer from severe disabling chronic pain throughout my body in all my joints. Unfortunately the chemical sensitivity I have makes me intolerant to painkillers so I end up in the E.R. with allergic type reactions and difficulty swallowing, breathing, irregular heart, muscles spasms, rash and digestive issues with all the different painkillers I had tried.

Then I got lucky one day and discovered a pain medication called "fentanyl" that I could tolerate better than all other painkillers, It comes in the form of patches that you stick on your skin. The recomnded use for one patch is 72 hours (3 days). At first I also had some bad reactions to this as well from as little as wearing the patch for 3-4 hours but I did manage to desensitise myself to it enough eventually so that I could tolerate one patch for at least 12 hours before I started getting adverse reactions from it. The patch allowed me to get some of my life back and participate in simple activities I couldnt do due to the pain I feel when I move.

But there was also another catch, the patch is heat sensitive, and having a fever or a hot spa, sauna, electric blankets increases the rate of absorbtion making it risky for overdose. My Pain managment clinic doctors overcome this problem by allowing me one patch a day rather than the 3 days so I could take the patch off before bed and avoid causing myself harm as I get overcooked in bed and wake up feeling sick as aresult of my Dysautonomia.

Unfortunately Im one of those Dysautonomia patients where overheating is my worst symptom, I have been admitted to hospital purely due to heat related symptoms, even in winter I have the air conditioner on, I am not simply heat intolerant but more so that I overheat severely and become feverish regardless of the external temperature.

Now I found out that the Department of Health is denying me further use of the fentanyl patches as it does not comply with their guidelines to use one patch for 3 days. In their excuse for denying me they responded saying "A person will not receive excessive drug release from the patch if the body is running warmer than usual" but the actual "conusmer information sheet" that comes with the medication says "tell your doctor if you develop a fever as the amount of fentanyl absorbed by the skin increases" So here we have a massive contridiction and Im being denied a pain free life based on a stupid contridiction that is so easy to disprove, but the government department refuses to acknowledge their wrong despite the manufacturers statement and all the information out there on the web.

I feel like Im being discriminated against by the department of Health because they fail to understand the details of my Dysautonomia. I have alreday appealed and its been denied. Any suggestions on what to do?

[Sunfish]

how high does your body temperature actually get? prescription inserts have to lean on the side of extreme caution. i've spoken with several of my doctors & my pharmacist about how the fentanyl patches react to body temperature fevers & have learned that problems don't tend to occur unless someone has a REALLY high fever, i.e.106-107 or unless something such as an electric heating pad on high is held directly over the patch. upon reading the insert i was concerned myself due to my history of chronic fevers but all of the physicians & pharmacists i spoke with, all of whom i know well & trust immensely, felt that there was nothing for me to be concerned about. if the med were to be released a tiny bit more while you were sleeping the worst that might happen is that you might get a bit drowsy; since you're supposed to be sleeping that would hardly be considered a problem.

i'm not trying to minimize your concerns; having read the same insert myself it's obvious that you're only trying to be responsible & cautious, particularly in light of the fact that fentanyl is far from a benign drug. i'm also not one to generally defend anyone trying to deny someone a much-needed medicine. it may very well be however, in this case, that the cost of being overly cautious in this case isn't really warranted. additionally, while i know it's with the blessing of your doctor(s), the fact that you're removing the patches nightly is not the best way to keep an even dose of the med in your system. quite honestly, if i were the person reviewing your situation & the determination of whether or not a patch daily was warranted (rather than every 3 days), i wouldn't be convinced. unless you have actually had the "overdose" reaction due to body heat OR unless your body temperatures reach 105 or higher for long periods of time, i.e. several hours, it's probably just not necessary.

i hope this helps...

melissa

[Troy]

I actually have two types of overheating, one where my skin surface becomes very hot and the other where my core temperature overheats. The area on my arm where I stick the patch is sometimes icy cold but then suddenly my temperature spikes and the area just continues overheating untill it becomes very hot to touch, ive been told by the pharmacists at the Durogesic fentanyl company that as long as your body temperature is fluent and consistent its not an issue to be running warmer but if you suddenly go from cold skin that the patch has adjusted to and and increase to a few degrees higher in temperature , then the sudden change does influence the patch. Thats what exactly what happens to me, often when I overheat with the patch on I end up becoming dizzy, nauseated feeling like throwing up followed by respiratory depression and feeling ill, when I check my blood pressure and pulse in that state I find that my heart rate has dropped from my usual 85 bpm to around 51 bpm along with a low blood pressure. I have often ended up at the local hospital this way from the fentanyl patches. Most of the time my core temperature is around 38c or above but when I overheat that goes to around 39c to 40c's and my skin temperature gets even a lot higher then that and lasts for many hours. I have often woken up in a state of panic from my bed and rushed directly to a cold shower after feeling like I had just suffered severe heat stroke.

When I get overheated on the patch or if I exceed the 12 hours that my body is able to tolerate I start feeling the adverse symptoms, so even if heat was not an issue I cannot go above using the patch for longer than 12 hours as I still begin to experience adverse reactions particularly with my vitals and develop a rash. When I get this way I take the patch off but if I was asleep I could not do that. Once I took the patch off right before bed and when I went to sleep I kept waking up gasping for air as I experinced severe sleep apneoa and my breathing kept stopping.

This fentanyl is the only thing im close to being able to tolerate for pain, if they took that away from me there is absoloutely nothing else left I can take for pain as my Doctors have been patient enough with me to try everything else out there.

My temperature problems are unlike most of the other Dysautonomia patients here. Since I overdosed on recreational drugs 8 years ago overheating and fevers have been my worst symptom, the sufficating heat radiating from my body makes me feel irratable and angry all the time, I feel like im stuck in a constant sauna I cant escape from or shake of the feeling off. Even in winter when its raining I just sit out in the cold and watch the steam rise off me, there is something very wrong with my temperature, I have posted here a few montsh ago about it ... http://dinet.ipbhost.com/index.php?showtopic=10123&hl= <---skip to the 3rd paragraph

[delphicdragon]

Have you thought of taking them off after 12 hours, and then trying to stick them back on, maybe with a soft gauze wrap or something? This way you would get one every 3 days, but you would be able to use them every 12 hours. If you place them on areas of your body that you can wrap something like an ace bandage around, the medicine dose should be the same. Maybe you could even put them in the fridge overnight so they don't lose as much stickiness or some of the medication. Just a thought. Never used a fentynal patch... Maybe this isn't possible and once they are unstuck, that's it.

It sounds like you are unable to clear the drug fast enough from your system- hence the overdose type reactions at 12 hours.

Sara

[Sunfish]

sara's idea is actually a very good one. my pharmacist emphasized to me that should my patch ever start to come off, fall off, etc that there's still plenty of the drug inside & that, as such, i should just tape it on myself. in other words the adhesive itself has little to do with the drug inside, other than the fact that you would want to keep the adhesive area unobstructed so that absorption could still take place. i wouldn't mess with any type of refrigeration or anything of the sort but since removing the patch seems non-negotiable, removing & reapplying the same patch could work out. you might have to play around to find the best type of tape to reapply it with, i.e. one that works without bothering your skin too much, but there are LOADS of options so plenty to try even if you have very sensitive skin.

additionally you might be able to pursue getting a patch for every 2 days rather than every 3. still not ideal but better than nothing. i mention this only b/c my doc asked me if my patches lasted me for the 3 days as she has some patients who need to change them every 2. she explained to me that there's a certain population that metabolizes them a bit differently such that they don't last for a full three days; this is something that has been researched with results published in medical journals & she has no trouble getting the every 2 day doses covered by whatever insurance coverage they have, government or private.

hope this helps,

melissa

[flop]

Hi, sorry to hear that you are still having such bad pain.

Some of the side-effects that you describe do sound like opiate overdose rather than allergic reaction (rash sounds allergic though). I wonder if the fentanyl patch is stronger than your body can tolerate (even the smallest dose patch is a hefty dose).

What I'm wondering is if you can help 2 problems with one solution?? Some types of patch can be cut in half (it depends on the mechanism that releases the medication - you can't cut resevoir patches as the med leaks out but if the med is in the glue they can often be cut) (ask a knowledgable pharmacist). Using only half a patch would give a lower dose of fentanyl - hopefully plenty to give pain relief but not so much that you get drowsy and respiratory depression. If it worked you could take it off in the evening and still have the other half left for the next day. (Then if you could add Melissa's 2 day supply strategy you would have enough for daily use).

If you can't cut the patches I would try taking them off and putting it back on the next day. Keeping dust off the glue would be important so I would advise a plastic box to keep the patch in overnight, should also stop it drying out too much.

Trying to keep the patch and area cool - there are some types of sports bandages/wraps that come soaked in a cooling solution, and you can spray the bandage again and again to keep the area cool. If you put the patch on an arm or leg you could put that type of cool bandage over the top, may help with the temperature fluctuations.

I hope you find something that works soon,

Flop

[Sunfish]

flop, endure et al -

just as an fyi, i'm 99.9% sure that all varieties of fentanyl patches are the resevoir type and, as such, can NOT be cut. unless they are much different over on your side of the pond . here in the us of a though i've used the patches from several different manufacturers & based on conversations with my doc & pharmacist as well as reading i've done i'm quite certain that none of the available patches can be safely cut....obviously can't hurt to double check just in case the manufacturing/ design of your patches differs significantly.

melissa

[Troy]

Thanks for the advice , sometimes the simplest solutions can be the best ones. Well both your ideas sounded good in theory, I rang the manufacturer to ask if I could cut the patch into 3 parts but unfortunately they told me not to as it could be unsafe, but to be honest I dont know why its an issue, the patches I use are just a very thin clear plastic matrix strip with no gel or resorvoir, but anyhow woulda been perfect if I could have cut it but I'll have to take their advice not to.

As for the second idea of re-using the same patch for 3 days by taking it off and reapplying it..well im testing that out tonight to see how it goes, I asked the manufacturer about that too but they couldnt give me a definete answer on that, they just said to try it and see but to avoid putting it in the fridge so I'll try a small air tight container instead but somehow I have a feeling its going to dry up by the 3'rd day, oh well one way to find out, i'll post back in 3 days with the results, thanks for all the help.

[Maxine]

I don't know very much about pain meds, as I don't tolerate them well at all.

I just wanted to send you my thoughts and prayers, and hope you can find a way to keep yourself pain free.

Big Hug,

Maxine :0)

[Sunfish]

just another thought, though it may or not make sense to you since it sounds like your patches are different than mine as mine have a bit of a resevoir. if i were going to remove my patch & reapply it daily i would think the best method of preservation/ storage might be to do my best to reapply the original back onto the patch & then put it back into the original envelope packaging, which in the case of mine is a sort of foil. after that i would then put it in an air-tight container.

good luck!

melissa

[Miriam Poorman-Knox]

Do what I do have them write for the recommended dose and use one patch a day. The irony is that they will spend thousands of dollars. Plus fill your closet with packages of them. But, it works for me. Might be worth thinking about. Miriam

[flop]

Miriam, I'm glad that you have managed to get a supply of patches to meet your pain-relief needs. The problem that Endure has is that her medical insurance/medicare/medicaid (sorry don't understand the US system properly) have refused to pay for more than one patch every 3 days - if she uses them one a day she will run out too fast and them be without any pain relief until she is allowed a prescription refil.

Sunfish - I like your thoughts about putting the original packaging back on to keep the patch sticky (don't have any experience with patches myself as I have been fortunate to either manage with oral pain relief or be in hospital and getting medications by IV).

Endure - have you tried writing to local politicians explaining the pain you are in and that lack of funding is a problem? Sometimes getting politicians involved has a way of solving financial problems (sad but true in the UK).

Hope you get something worked out soon,

Flop

[Troy]

Thanks Sunfish for thats storage advice, my patches are the Durogesic patches made by the Jannsen-Cilag company, they also come in a foil envelope packaging, the original piece of plastic their attached to devides in half as you peel it off, sort of like some of those band aids, so its difficult to re attach it back to the original part as its no longer in one piece after peeling it off. But putting it back in the foil was a great idea.

Miriam thanks for your help, but just as Flop explained the Medicare here in Australia refused to fund my medication more than one patch every 3 days.

Flop, great advice, that was next on my list, I was going to write a letter to the health minister, I also sought some legal advice and complained to the Human rights and equal oppurtunity board and the Commonwealth Ombudsman here but to my suprise yesterday I received an email from the Medicare saying that they have now decided to re-consider my appeal even though initially they had refused it. All they request now is a letter from my Autonomic specialist explaining why I need one patch a day and telling them how severe my overheating is. Getting that letter from my specialist is the easy part as he knows and always says how my overheating is the worst his seen and how uncommon it is to be that severe even for POTS. By the way Im a guy.

[llp479]

Have you tried contacting the manufacturer and seeing if they will help you? I'm in healthcare and many of the drug companies have programs to help people get the meds when their insurance won't pay for them, or because they no longer have healthcare benefits.

[Troy]

I've contacted the manufacturer several times for information, they are fully aware of my situation, and even have me on record in their data but they havent offered to help with medication supplies in any way. Oh well I think this issue will be getting resolved soon anyways as the government has decided to re-evaluate my situation.

Thank you all for your help

[pat57]

I think you could cover part of the patch on the business side, rather then cut it. A piece of light gauze then wax paper to block a portion of the patch from contacting the skin-maybe??

[flop]

lol Pat I was just thinking along the same lines - was wondering if taking off only half the backing plastic and securring the patch with a light bandage would work to reduce the dose you absorb?

Endure - sorry for any offence caused by referring to you as a "she". I know that most of us POTSies are female but I shouldn't assume!

Flop (I'm a she)

[Miriam Poorman-Knox]

Endure,

Please be very careful with these patches When they are cut or altered you don't get a measurable amount. It is possible to OD on Fentynyl patches. I know they are right now your lifeline but . God Speed...... Miriam

[goldicedance]

I feel sorry for you and the situation you find yourself in.

You might be interested to read this website:

http://www.fda.gov/fdac/features/2006/206_fentanyl.html

You should be very careful about using these patches as others have stated. The FDA warns against using the patch with heating pads, etc. The FDA further warns against cutting the patch, shielding the patch, etc. as you can not be sure about the amount of medication you will be receiving.

Finally, no one, I don't think here, has mentioned the fact that there should be concern from Department of Health and the manufacturer about dispensing one for daily use given the possibility of overdose and addiction as well as street sales of this drug. It seems to me that they have no way of ensuring that you will actually dispose of the "spent" patch after 1 day.

There have been a number of cases of accidental and intentional overdose/death from inproper use of the patch. Just last week, I saw a TV show - Dr. G, Medical Examiner. In that episode she had to determine if the person's death was from an overdose of the drug or a defective patch. Apparently there have been cases where the patches are defective and release more of the drug than should be due to leakage, etc.

Sorry for the rambling. I just caution about the problems with the patch. We care about you and don't want you to experience any adverse reactions to the patch!

Lois

[yogini]

Hi,

I was wondering whether you've had your "overheating" symptoms looked into further. What you describe could come from dysautonomia, but it sounds a little extreme...so maybe there is something else going on? Good luck, feel better.

[Troy]

Thank you all for your well wishes and all the help, Theres been some great suggestions here and dont worry I am very careful with the patches, my body usualy warns me at the first signs when the patches start getting overwhelming. Im hypersensitive like that. Thank you for caring though

Flop its no problem at all, it takes a lot more than that to offend me, hehe, your right though one of the first things I was told about POTS is that the majority of females have it. I still dont know how I feel about having a condition that mainly occurs in females though

rqt9191.. I did everything I possibly could to uncover my overheating symptoms. In the past 8 years that I've been overheating my specialsts have done all sort of tests but maybe they overlooked something, but despite all my efforts all I managed to learn was that temperature and thermoregulations in the brain is still a very complicated matter for science. I even contacted various scientists around the world who study thermoregulation and told them about my situation but there wasnt much they could do, a few suggested experimental medication which I tried like "clonidine for the use of hot flashes in women" might possibly benefit my overheating but that didnt work, I tried aspirin for a while as it has the potential to reduce fever but that was also no good and finallly I tried "Carvedilol" known to reverse hyperthermia in recreational drug overdoses but seems that was too little too late.

My specialists have compared my overheating and fevers to some symptoms experinced in spinal cord and brain trauma patients but there isnt much else out there in literature other than the heat intolerance in POTS. Sure I also have heat intolerance which can be a bother in summer but mine goes well beyond that as Im often generating excessive heat even in very cold weather, and every time I have an adverse reaction to any medication, when I sleep, if I excercise or if I get upset, or take part in any sexual activity or even suddenly for no reason I find myself extremely feverish to the point I feel like I need emergency help. This is been going on for too long and im so frustrated with the fact that no one really understands why and with so much development in science it makes me angry that no one really bothering to study to fix me all because my situation is such a minority.

Also a lot of my symptoms share similiar charecteristics from other Dysautonomia symptoms, so to be honest POTS is the least of my worries, it hardly causes me any discomfort these days because everything else is so much worse in comparisson to the POTS symptoms, that why when I get asked what I have I say Dysautonomia rather then POTS because I have a whole bunch of other symptoms from other Autonomic conditions next to POTS.