I wore the Fentanyl patch, in different strengths, for about 2 years. I had no problems, but I was told Lyrica was "THE RSD DRUG" to be on. I changed & Lyrica was HORRIBLE (FOR ME)!

I have found a great combination - MS CONTIN ( for Long Term Pain) and Klonopin twice daily. This appears to be working. I GAINED 70 POUNDS while on Lyrica. I have NEVER HAD A WEIGHT PROBLEM UNTIL NOW ---- and I can't lose the weight. The excessive weight has caused all types of secondary medical problems. I would NEVER TAKE LYRICA - even though it does help control the pain, there are too many BAD SIDE EFFECTS.
TAKE CARE.
yiisd

I agree, Lyrica is another med I tried that was horrific. That and Neurontin. ewwww... I have been on Topamax for a few years now, which is better for me because I suffer from RSD in my neck and my head (as well as other areas). Topamax is often written for migraines. It has the least amount of side effects for me so far out of all the seizure meds I've tried. I have a terrible time remembering things sometimes but I don't know if its the RSD or the meds. Topamax doesn't cause weight gain but it does make a lot of food taste funny and I've lost my taste for alcohol and soda. I used to enjoy an Amstel Lite after work but it just doesn't taste right any more...

I only made it for a week or so on Lyrica - I was walking into walls and doing other crazy stuff. When I took Neurontin I went up 2 dress sizes in less than a month. It was nuts. And I just felt awful.

So sorry about your weight gain. bummer. I hope that you can find a way to lose it since it has impacted your health. the best of luck to you....

XOXOX Sandy

Hi, everybody:

I have RSD in my left knee/leg. This syndrome is responsible for severe chronic pain, which is controlled very well by Duragesic (fentanyl patches). I use Duragesic at the dosage of 125 mcg (one 100 mcg patch and one 25 mcg patch every 72 hours). I am sooo glad that my primary care physician is knowledgeable and caring enough to prescribe this medication for me. The fentanyl patches have proven to be lifesavers for me because they have allowed me to live a life worth being called "life".

I do not have cancer pain and I never had cancer pain. Duragesic is not just indicated for people with cancer pain. Here is what you can find on the paper that comes in every box of fentanyl patches.

.................................................. .................................................. ....
DURAGESIC® (fentanyl transdermal) is indicated for management of persistent, moderate to severe chronic pain that:
•requires continuous, around-the-clock opioid administration for an extended period of time, and
•cannot be managed by other means such as non-steroidal analgesics, opioid combination products, or immediate-release opioids.

DURAGESIC® (fentanyl transdermal) should ONLY be used in patients who are already receiving opioid therapy, who have demonstrated opioid tolerance, and who require a total daily dose at least equivalent to DURAGESIC® (fentanyl transdermal) 25 mcg/h. Patients who are considered opioid-tolerant are those who have been taking, for a week or longer, at least 60 mg of morphine daily, or at least 30 mg of oral oxycodone daily, or at least 8 mg of oral hydromorphone daily or an equianalgesic dose of another opioid.

Because serious or life-threatening hypoventilation could occur, DURAGESIC® (fentanyl transdermal system) is contraindicated:
•in patients who are not opioid-tolerant
•in the management of acute pain or in patients who require opioid analgesia for a short period of time
•in the management of post-operative pain, including use after out-patient or day surgeries (e.g., tonsillectomies)
•in the management of mild pain
•in the management of intermittent pain (e.g., use on an as needed basis [prn]).
.................................................. .................................................. ....

Of course, I can understand that some people do not tolerate Duragesic and its possible side effects. First, this medication used to give me very severe nausea and vomiting, which I had to live with for months so my pain could be effectively controlled. Now the nausea and vomiting seem to be gone; I have not had problems with these side effects for years (I have been using this medication for about 8 years and a half).

If someone cannot tolerate Duragesic, that person should just tell their doctor to stop prescribing it for them. It does not mean that ALL doctors should not prescribe this medication for ANYBODY that does not have cancer pain. What would the people with severe chronic non-cancer pain do without this medication, especially in cases when this medication is the only one that works?

Yes, Duragesic can be dangerous for some people. So can many other pain medications be. In my case, NSAIDs (non-steroidal anti-inflammatories drugs) can be dangerous for me. They can even kill me. It is not a reason for me to tell doctors to stop prescribing it for anybody, right? What would a person needing an NSAID say if he/she could not get access to his/her medication anymore?

One more thing: it is not pain patients' fault if some people abuse Duragesic to get high on it. Personally, I have never gotten a high from this medication.

Priscilla

Dear Priscilla,

It's wonderful that the batches work so well and glad it gives great pain relieve. But sorry this is a dangerouse drug. I have watched more than 1 person have a horrible time getting off them, I mean just awful. So, honestly if your going to take it for the rest of you life then your fine but if you have a expectation that you are just going to just come off that stuff, especially at 100 than a 25 mg every 3 days, I assuming that's the dosage, it's not going to happen.
Please I say this with care and just to warn you not to be a rude or disrepectful. I know some others will chime in.

With all respect,

Gabbycakes

Hi, Gabbycakes:

What is good with this forum is that we can all share our experiences and opinions, however different they might be. Everyone feels free to share what they have on their heart.

Like I said, it is true Duragesic can be a dangerous medication. Almost every medication can be dangerous if its indications are not respected, whether by the doctor or the patient. In my case, a non-steroidal anti-inflammatory drug (NSAID), which is considered not dangerous for most people, almost killed me and made my two-year-old baby an orphan. How? By giving me such a severe asthma attack that my asthma medications were unable to control. I passed out and became all blue, according to the paramedics my beloved baby was able to call. I taught him to call 911 with doggy and kitty stickers. In case of a medical emergency (like Mommy not responding to him), he just had to dial doggy kitty kitty for 911 (a doggy sticker was stuck on the number 9 of my phone while a kitty sticker was stuck on the number 1 of my phone). When the 911 dispatcher replied, he just had to say "Mommy, booboo, sleeping" and put the phone receiver down so the 911 dispatcher could trace the call. Without my treasured son, I might be dead at this time, just because I took an NSAID seen as safe. So what is a dangerous medication and what is a safe one? I think it all depends on the person and the medical conditions he/she has. A medication seen as safe for a person might be dangerous for another one.

One anesthesiologist forced me to wean off of Duragesic without my full and informed consent if I wanted to receive a sympathetic nerve block for the RSD in my left knee. After I was weaned off of Duragesic without any big withdrawal problems, this anesthesiologist refused to give me the block he had promised me. Result: I was in so much pain (well over a 10, I would say, even if it might seem exxagerated to some people) that I wanted to jump off of any high enough balcony. My son was hanging on hard to one of my legs, screaming "No, Mommy! No!" Because of this lying anesthesiologist, my baby could have been an orphan. Fortunately for me, my primary care physician was intelligent, knowledgeable, and caring enough to see I badly needed Duragesic to control my severe chronic RSD pain and, little by little, he increased my dosage to 125 mcg (one 100 mcg patch and one 25 mcg patch every 72 hours). Result: my doctor was victim of harassment from the insurance company's doctors. I went to see an attorney, who told me the insurance company had no right of doing this. I then went to the insurance company to see their doctors and threaten to sue them if they continued harassing my doctor. Guess why they harassed my doctor? Because Duragesic is a very expensive medication for the insurance company to reimburse, even if it is only a 70% reimbursement (I have to pay the rest, that is, the 30%). For now, the insurance company's doctors stopped harassing my doctor. It is funny for me to see the insurance company's chief doctor run away when he sees me arriving. Thanks to these stupid doctors, I have to live in fear of losing my wonderful and effective fentanyl patches.

Gabbycakes, I know you are caring. I never thought you were being rude or disrespectful. I thank you for sharing your opinion and I encourage others to do the same, whatever their opinion might be.

Priscilla

Did you know that Duragesic/Fentanyl is a barbituet(spelling), I know I'm spelling that incorrect. I'm glad you did not think I was being rude. Just please be carefull

Gabbycakes

Hi, Gabbycakes and others:

I am not sure whether Duragesic is a barbiturate or not. All I know is that this medication is called a narcotic, an opioid, or an opiate. I do not know what the difference is between the three.

Like I said in my previous message, I did not have any horrible withdrawal symptoms when my anesthesiologist, by trickery, forced me to wean off of Duragesic. Well, this is not exactly true, if you consider I was in such intense pain after the fentanyl patch was taken away from me without my full and informed consent (at that time, I was on the 100 mcg dosage, not on the 125dosage, like today).

I have two main problems with Duragesic.

The first problem is that my fentanyl patches do not last the full 72 hours they are supposed to. They seem to last only about 48 hours. Result: on the third day of the patches, that is, between the 48th and the 72nd hours, I sometimes feel bad withdrawal symptoms, such as shaking, feeling weak and tired, runny eyes and nose... Very, very rarely, I feel so bad from withdrawal that I have the feeling insects are running under my skin. Is that called hallucinations or is that just what I said, feelings? I have no idea.

The second problem is that, everyday, I have to live in fear that my primary care doctor will decide to wean me off of Duragesic without my consent, especially because he is harassed by the insurance company. As you know, such companies do not care about their patients' well being, but only about the profits they can make. I just could not live a life worth being called a "life" if I had to feel intense chronic pain for the rest of my life. Sometimes, I think it would be better to be dead in those conditions, even if I am afraid of death.

There are times when I wish I did not have to use Duragesic so my severe chronic RSD pain could be very well controlled. I tried many, many, many medications from different categories but none of them worked or worked as well as Duragesic does. Even the morphine sustained or extended release does not work as well as Duragesic for me. The problem with capsules or tablets is that you have to remember to take them on time. This is extremely difficult for me because of my memory and concentration problems, which I have and had well before I started using Duragesic.

If I did not have Duragesic to control my severe chronic pain well enough, what would I do? What would become of me? I could not be effective at any job and I would someday become homeless. When you see what kind of life homeless people have, you just do not want to become one of them, especially if you have a lot of health conditions, as is the case with me.

If any of you knows of any medication that would be at least as strong as Duragesic for the control of severe or intense chronic pain, whether it is a narcotic or something else, feel free to share.

Thanks again for your help and information.

Priscilla

Dear Priscilla,

When we are on such strong meds like the Duragesic, we tend to develop a tolerance to them. That is why over time we need a higher dose to achieve even amounts of pain relief, and they run out on us sooner than they are supposed to. I was on Fentanyl patches for 8 or 9 months, at one time getting up over 100 mcgs. I tapered down, and then eventually off, of them, about 15 months ago.

I am so sorry that you feel your doc was trying to deceive you by not giving you your scripts at one time. And that you've experienced withdrawal symptoms without an effective antecdote. It seems like you could use a better doc at this point, one that is more willing to work with your insurance company on gaining authorizations for your meds and who will evaluate different options for you so that you aren't so sick all the time.

When you've reached such a high dosage on your meds and they wear out on you so quickly and you're just not doing well with them it's time to consider other options. There are a lot of high quality time release opiods out there that you DON'T currently have a tolerance for that you could consider that may be really effective for your pain. The trick is to switch to one of those for a while so that you can get the relief your body needs. By switching on and off meds on a timely basis you can attempt to avoid the tolerance issues you seem to be experiencing right now. In essence, your meds aren't working all that well for you.

I used Suboxone for about 3 weeks or so when I went off Fentanyl, I could have used it for twice as long. But if you are switching to another med in the same family you may not experience the withdrawal effects that I did.

Have you considered Lidocaine or Ketamine infusions for your RSD? Ketamine has been extremely effective for me, I highly recommend it.

I truly hope that you can get this straightened out. So sorry for your suffering....take care and keep us posted, Sandy

Dear Priscilla,

I was able to go off of Fentanyl when I started receiving ketamine infusions in April of 2010. I began with the 10 day low dose outpatient protocol. Previously, I had had 8 stellate ganglion Blocks, 1 lumbar block, 8 lidocaine infusions (300 mg each), and tons of PT. I had also been on many pain meds.

I still take a lot of meds and have RSD symptoms, it is just much more manageable than before. ketamine has changed my world for the better.

Your doctor would be able to tell you which pain meds you could try to improve your ability to control your pain, like Dilaudid. Many on this board have had great results with methadone. or perhaps you could start switching your Fentanyl patch every 48 hours instead of 72.

Nigel from this board is in Germany ( or is going there soon) for ketamine treatments with Dr. Rohr. Perhaps you could touch base with him?

Please take care and never lose hope...xoxox. sandy

Priscilla,

Sorry for the delay in getting back to you. I was away over the weekend.

I have very limited experience with opiods, as I have only taken a few different kinds. I have never been prescribed a time release pill like oxycontin or even Dilaudid, I only suggested them because I have read about others taking them. My PCP thinks they are too addictive and won't write scripts for time release opiods. I was on percocet and Fentanyl for the most part, now I use Fiorcet for headaches, and Nyucinta and an occasional oxycodone when I am flaring. I work FT and can't take a lot of meds. Nor do I want to. But I am not against them. Its just where I am with my RSD for now.

You really need the advice of a physician. No one on this board can tell you what to do. We can tell you what WE do, and what we hear that others have done, and what MIGHT work. But we don't know your personal history. Or the other meds you are on.

Please take care, Sandy