Hi, everybody:

I have been using fentanyl patches since September 2002 for severe chronic pain caused by generalized internal chronic RSD. At the present time, I use the 125 mcg dosage: one 100 mcg patch and one 25 mcg patch every 72 hours.

The primary care doctor who prescribes the fentanyl patches for me will never increase the fentanyl dosage, even if I need it someday. Why? I have no idea, but I suspect fear of the public health insurance company that covers the fentanyl patches (I have a co-pay of 30% for now). This insurance company has been harassing my doctor sooo many times because these patches are very expensive. My doctor must be tired and afraid of this harassment. Some lawyer will receive my visit soon if this insurance company continues acting this way. I have to add that I will have to use the fentanyl patches for the rest of my life because RSD cannot be cured.

My question is: Why do patients who have to use fentanyl patches for the rest of their lives have to see a doctor every month to get the prescription for the fentanyl patches when there is no change in the patients' chronic pain condition? Would seeing the doctor every three months instead of monthly not be enough?

Thanks for sharing your thoughts and information.

[Rrae]

I also use these patches (50mcg) every 72 hrs.
I'm not sure why you have to see the actual Dr every month, but all I do know is that, yes, it's a hassle every month to get the prescription because first I have to call the pharmacy to request my monthly refill, then I wait for the Dr office to call to say the script is ready, then I have to go to the DR office and pick up the written script and then take it to the pharmacy to fill.

As I'm sure you are aware, this is a very strong narcotic and with the DEA crackdowns, alot of Drs are running scared it seems. They have to keep a very close watch over this med.

I go to see my Dr once every 3 months for follow-up visits. I'm not sure why you have to see yours every month, especially since you've been using these patches almost 10 yrs. Each clinic is different I suppose.
It probably wouldn't hurt to just ask Dr why he needs to see you so often, but I'd venture to say it has something to do with this schedule med, it has to be personally delivered with a hardcopy prescription (no faxes or phone calls), and maybe because you are on such a high dose.
RSD is the pits and my heart goes out to you.

I hope your insurance doesn't continue making this so difficult for you.

Caring,
Rae

Hi, Rrae:

Because my primary care doctor does not give appointments, patients get seen on a first-come, first-served basis. I try to arrive at my doctor's office early every month, but since I am obliged to take public transportation (I have epilepsy and cannot legally drive) and since buses start running quite late in the area where I live, it is not early by the time I arrive at my doctor's office.

I have to wait between two to three hours to be seen. Having RSD sure does not help me wait in a sitting position for hours. I need another chair so I can put up my RSD leg (my RSD started in my left knee/leg before becoming generalized and internal), but when the waiting room is full of people, as it almost always is, I can kiss good-bye to a second chair. If I have to stand because I cannot find a chair and no one will give me one, it is even worse. When I ask for help from office staff, I hear things like: "You are not in a hotel here!"

Like you, I have to call the pharmacy a day or two before I go see my doctor, so I am sure the medications I need will be reserved for me and not given to someone else. I am tired to have to do this, considering the fact that I have been getting the same medications at the same pharmacy for years.

I hate going into a pharmacy to be told: "We do not have this or that medication anymore. We will have to order it and you will have to come back in a day or two to get it."

I want to tell the pharmacist: "Hello! I am disabled! I have RSD! Do you think this syndrome makes it easy for me to come back again and again for medications you should have ordered, knowing I come here every month to get them! Have you also heard of withdrawal (which I guess could be dangerous at the 125 mcg dosage) lowering my seizure threshold and causing a seizure! I am a mother who lives alone with her two-year-old baby! I do not want problems because of CPS if I have a seizure caused by fentanyl withdrawal!"

I already had seizures caused by fentanyl withdrawal; one of them was a status seizure (not sure of the exact name), which lasted a very long time. When I wake up after a fentanyl withdrawal seizure, I never ever call the ambulance because I am afraid the paramedics will call my doctor to tell him about my fentanyl withdrawal seizure (my doctor might wean me or cut me off of my fentanyl patches if he is afraid I will have another fentanyl withdrawal seizure); I also do not want the paramedics to call CPS, who will be more than happy to steal my baby.

Thanks for your kind words and information.

[Rrae]

Kitty,
That is terrible to be treated that way! People can sure be cruel.
The pharmacy I get my patches from is a small 'mom & pop' type of place. They even deliver the meds.
I wonder, would you be so lucky as to have a similar type of pharmacy near you? I used to get patches from a huge corporate chain (Walgreens) and like you said, they would always make it such a hassle to get my prescription filled.
Doctors should make SURE that patients like you and me never have to go into withdrawal. Do you have some sort of pain med on hand for 'breakthru' pain, or for times when you might be in a tight spot trying to get the patches?
Is there a way you can get in with a bonified pain specialist, rather than just the PCP? Sounds like you need a better care than what you are currently getting. A specialist would work more one-on-one with you and perhaps monitor your seizures. It sounds like a dangerous situation you are in regarding the withdrawal-induced seizures and not wanting to go to ER for fear of getting the patches taken away. I really feel that your healthcare team should be aware of what's going on.
Not trying to butt-in , but I'm just concerned for your safety.

Do you have family/friends who can help out with some of this?
I'd hate to think you're alone in all of this.

Rae

[Dr. Smith]

Originally Posted by kittycapucine1974

seizures caused by fentanyl withdrawal.

That's the kind of thing that doctors need to monitor, and since yours is aware of this potential, and your medical history/status, s/he may be watching out for your safety. It might not be medically prudent/responsible NOT to see you monthly to make sure everything's going alright.

It may depend on the doctor, clinic, state law, or bureaucratic intervention (instructing a particular doctor to do so). I know some patients who are required to see their doctors physically every month, and others who just have to physically go in and pick up their scrips (which does not incur an office visit). Coincidentally, the one that has to see the doctor is also on Fentanyl, but I've been told it's some kind of bureaucratic requirement along with monthly drug testing.

Doc

[ginnie]

I too have to go in to the doctor on a monthly basis. I think it has to do with what the state is now requireing of our doctors. They have to monitor all scripts that go out of the office. There is also now more paperwork to be filled out at each visit. I take morphine. There is alot of pressure now on the legitamate doctors when prescribing narcotics. If you can go to a pain specialist, maybe there would be a way for him to make sure the pharmasict has the medication you need. To be worried about withdrawl because they don't have it would scare me too. My walgreens is really good about keeping a supply for me as they know I come in every month. I know them by name and they sure know me!. My doctor has allowed me to keep a few extra pills in my possession, just in case the pharmacy runs out or has to order it. I have also been told, I can get a one month advance on my medications if we are in danger of a hurricane. I live on the coast of west fla. Try a pain specialist, rather than PCP. You may have less troulbe. I wish you all the best. ginnie

[martha kerasiotis]

Originally Posted by kittycapucine1974

Hi, everybody:

I have been using fentanyl patches since September 2002 for severe chronic pain caused by generalized internal chronic RSD. At the present time, I use the 125 mcg dosage: one 100 mcg patch and one 25 mcg patch every 72 hours.

The primary care doctor who prescribes the fentanyl patches for me will never increase the fentanyl dosage, even if I need it someday. Why? I have no idea, but I suspect fear of the public health insurance company that covers the fentanyl patches (I have a co-pay of 30% for now). This insurance company has been harassing my doctor sooo many times because these patches are very expensive. My doctor must be tired and afraid of this harassment. Some lawyer will receive my visit soon if this insurance company continues acting this way. I have to add that I will have to use the fentanyl patches for the rest of my life because RSD cannot be cured.

My question is: Why do patients who have to use fentanyl patches for the rest of their lives have to see a doctor every month to get the prescription for the fentanyl patches when there is no change in the patients' chronic pain condition? Would seeing the doctor every three months instead of monthly not be enough?

Thanks for sharing your thoughts and information.

That may be a provider's financial decision to see a patient every month or a conservative decision to see a patient every month. Many doctors will predate the scripts three months visits do the trick as long as the doctor feels certain the therapy is working. My doctor prescribes a new script every month without seeing me. I pick it up take it immediately to the pharmacy drop it off--hence no office visit charge-- the doctor I work for gives three month appointments if the patient is stable gives three scripts per medicine and we make sure they understand it is the patient's responsibility not to loss the scripts.

[DR-650]

Originally Posted by martha kerasiotis

That may be a provider's financial decision to see a patient every month or a conservative decision to see a patient every month. Many doctors will predate the scripts three months visits do the trick as long as the doctor feels certain the therapy is working. My doctor prescribes a new script every month without seeing me. I pick it up take it immediately to the pharmacy drop it off--hence no office visit charge-- the doctor I work for gives three month appointments if the patient is stable gives three scripts per medicine and we make sure they understand it is the patient's responsibility not to loss the scripts.

I just started using the Fentanyl Patch June of this year and I have to call my Doctors office 7 days in advance to tell them I need a refill and then go to my Doctors Office every month to pick-up my prescription for them. Also I have to submit to a drug screen. Steve...............

[kat3hay]

Originally Posted by martha kerasiotis

That may be a provider's financial decision to see a patient every month or a conservative decision to see a patient every month. Many doctors will predate the scripts three months visits do the trick as long as the doctor feels certain the therapy is working. My doctor prescribes a new script every month without seeing me. I pick it up take it immediately to the pharmacy drop it off--hence no office visit charge-- the doctor I work for gives three month appointments if the patient is stable gives three scripts per medicine and we make sure they understand it is the patient's responsibility not to loss the scripts.

It is something new here in Florida. Just started 2 months ago. Used to always get 3 months worth of refills, now have to go in every month. Might be able to just pick up the refills, not sure about that so that is something I will check out for sure. What about the tape to keep them on. Cannot find that anywhere. Have tried every medical tape out there but heard there was some kind of covering the manufacture will supply if you ask for it. Anyone know about that? My husbands patches fall off within 2 hours