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

Hi, Sandy and everybody:

Thank you so much for your support and information. You are all so kind to me that I consider you all as my friends. My family is not supportive at all, to say the least, and I have no friends in my life. Maybe people are afraid of my RSD. In fact, practically all of the persons with whom I come into contact want to flee me, as if RSD was a contagious disease. This is the reason why I prefer to call RSD a syndrome rather than a disease.

Sandy, you are right; I might be tolerant to Duragesic. I have been using this medication for about eight years and a half, but I have been on the 125 mcg dosage only since August 2010. I read somewhere (I do not remember where) that there are a few medications to help reverse one's tolerance to narcotic painkillers, without that person having to wean off of the narcotic painkiller he/she has been using. I think this type of medications is called NMDA agonist (or anti-agonist) receptors medications; my memory is so bad I do not remember the exact name of this type of medication.

If I am not being indiscreet, what pain medication(s) do you now use to replace the Duragesic you used to use?

If you read all my messages on this thread, you might remember I mentioned that it was my anesthesiologist who forced me, by trickery and what I would call "blackmailing", to wean off of Duragesic in exchange for sympathetic nerve blocks, blocks which I never received afterwards. Fortunately for me, my wonderful primary care physician, who I thank from the bottom of my heart (may God bless him for all the good he does for all his patients, not just for me), prescribed Duragesic again for me. Do you know what this stupid anesthesiologist said to me? He claimed that the fact that Duragesic worked for me meant I did not have RSD. This is just the most RIDICULOUS thing I ever heard from a doctor's mouth.

My insurance company is a public one, not a private one. Their only objective is to save money on patients' backs (except when one of them or of their loved ones is sick). Too bad for them (I mean the public health insurance company's doctors, who dare call themselves "experts") I am not afraid of them. I am willing to go to court, from the lowest level court all the way to the European Court for Human Rights, which already condemned France for several things they did when it comes to not respecting human rights.

Like I said in one of my previous messages on this thread, I tried many, many, many medications from different categories, most of which did not work at all and some of which worked very little or too little. I tried functional knee braces (but mine recently broke after a fall; it is impossible for me to get another such brace because I am not in the USA at the present time). I tried physical therapy (no help at all there; PT was so painful for me it could have just sent me to the Emergency Room and almost everyone knows hos ERs treat chronic pain patients, like druggies). I tried relaxation, guided imagery... (no help there). I tried sooo many different things for my RSD pain it is impossible for me to remember them all.

The only thing I have not tried for my RSD pain is the RSD Ketamine Coma Procedure. I have posted a message about this on the RSD thread. Maybe you have answers to some of the questions I asked, since it seems to be the treatment you tried. Maybe I am wrong? You tried ketamine booster infusions without first going through the coma for a few days or a week?

I am usually doind well with Duragesic, but only if withdrawal symptoms do not kick in between the 48th and the 72nd hours. Fortunately for me, if withdrawal symptoms happen more and more often, they are not usually that strong.

Quote: "There are a lot of high quality time release opioids out there that you DON'T currently have a tolerance for that you could consider that may be really effective for your pain." Like I said in one of my previous messages on this thread, I have trouble remembering to take oral medications on time because of my memory and concentration problems, which I had well before I started using Duragesic. If there is a way to remember taking such opioid medications and if they are as effective as Duragesic, I will be happy to try them.

Is Suboxone not an opioid antagonist? I thought opioid antagonists were supposed to "kick" or "chase" the opioids off of their receptors in the brain and body.

The only medication from the lidocaïne family that I tried is the Lidoderm 5% patches, that can be cut off in pieces to fit one's needs. Lidoderm works for the type of pain that feels like electricity stabs, but it does not really work deep inside my RSD knee.

The last option I can see and that I consider during my saddest and most desperate times is suicide, even though I do not want to die. I just want my RSD and its pain to die.

Thanks again for your help, caring, and information.

Priscilla

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

I agree 100% with you. Different medications react differently on certain patients.
I had NO PROBLEM coming off 150 Fentanyl - NONE. HOWEVER the doctor put me on Lyrica only to gain 60 pounds & the medical ailments that are associated with obesity.
I had absolutely no problem with 3 years of Fentanyl Patches, no problem coming off of them, but Lyrica has ruined my entire life -- my vision (read the fine print on vision problems with Lyrica). I went back to MS CONTIN ( Morphine Extended Release) simply because of the price.
My advice to anyone - MONITOR YOURSELF WHILE TAKING ANY Rx. What is good for one may be catastrophic for another.
Good Luck To All of you out there trying to find both a physician and medications that will increase your quality of life.

Hi, Sandy and yiisd:

Sandy, if I won a large sum of money at the lottery, my dream would be to immediately leave for Germany so I can get the RSD Ketamine Coma Procedure. Unfortunately for me, I do not have at least U.S. $ 50,000 to pay for this procedure and no one in my family is willing to loan me the money, even though I have a job and could reimburse them little by little. As for the banks, they do not want at all to loan money to chronically sick people, even if it is discriminatory and even if the syndrome of RSD is not deadly in itself. Since I just earn the minimum monthly wage, it will be a very, very long time before I can save enough money for this procedure, especially considering the fact that U.S. $ 50,000 is not enough if the patient has complications from the procedure, complications for which the tratments also have to be paid.

Sandy, I might be wrong, but I think the ketamine infusions you started receiving in April 2010 are booster ketamine infusions. I thought a patient first had to go through the Ketamine Coma Procedure (inpatient, 5 to 7 days) before receiving the (booster) ketamine infusions regularly enough so the RSD pain does not come back. I do not know what the differences are between the inpatient and the outpatient protocols; for example, which one has the highest success rate.

Another anesthesiologist I consulted for a second opinion (not the trickery one I mentioned in previous messages) and because I wanted to receive lumbar sympathetic nerve blocks (my RSD is in my left knee) refused to do the blocks. He claimed my RSD had gone from being SMP (Sympathetically Maintained Pain) to being SIP (Sympathetically Independent Pain). According to him, since my RSD pain was sympethetically independent, I had gone from having RSD to also having Central Pain Syndrome. I never heard anything like that... Several months later, I went to see this anesthesiologist again to insist on receiving the lumbar sympathetic nerve blocks. This time, while still refusing to give me the blocks, he claimed he never told me I had Central Pain Syndrome. I should have brought a tape recorder with me, hidden in my pocket, so I could have registered the first consultation with him, during which he told me I had Central Pain Syndrome. I feel like the doctors I can trust can be counted with the fingers of one hand... How sad...

Sandy, I tried many, many, many medications from different categories to try to control my severe chronic RSD pain. The only medications that worked are the long acting narcotic painkillers. The other medications had very little or no effect.

The primary care physician who first prescribed Duragesic for me (I was on Oxycontin before) said Duragesic is the strongest painkiller available on the market.

Have you tried the Dilaudid you mentioned? If yes, was it effective against your pain?

My doctors think methadone is only for the druggies who are trying to wean off of the street drugs they have been taking.

The public health insurance company I am registered with refuses to reimburse Duragesic when it is changed every 48 hours instead of every 72 hours. This company already harasses the primary care physician who prescribes my Duragesic with a change every 72 hours because it costs them a lot of money to reimburse. The harassment would certainly be much worse if the change was every 48 hours. I do not even know if it is allowed by law to have patches changed every 48 hours instead of every 72 hours. I do not know if I can take MSIR (morphine immediate release) between the 48th and the 72nd hours to "calm" the withdrawal symptoms I sometimes have between those hours.

I read on a health forum that Dr. Rohr in Germany does not do RSD Ketamine Coma Procedures anymore. I still hope Nigel will be able to get this procedure so he can get some help with his pain.

Quote: "...never lose hope..." I try to but it is becoming more and more difficult to keep up the hope when the sky falls on your head with bad news after bad news. First the RSD, now the Central Pain Syndrome. What next? Cancer, so I die and the two syndromes above cannot hurt me anymore?

Quote from yiisd: "Different medications react differently on certain patients." This is also what I think.

yiisd, if I may ask you this question, why did you wean off of Duragesic? Was it your choice or your doctor's choice? Had it stopped working for you? Fortunately for you, you have a doctor willing to prescribe MS Contin for you. Many doctors do not like to prescribe long acting narcotic painkillers in pill form because they are afraid that some pain patients, who also happen to be druggies, will break them in pieces to get a high. Maybe some pain patients do this, but their number must be very, very low.

Quote: "What is good for one may be catastrophic for another." Well said!!!

Thanks to everyone for sharing their opinions and information on this thread.

Priscilla

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

Hi, Sandy:

If Dilaudid (hydromorphone) is at least as effective as Duragesic, I am willing to try it. I am not sure if this medication is indicated only in cases in which the severe chronic pain is caused by cancer.

Do you agree with your primary care physician when he says time release opioids are too addictive? Your doctor is one of the many physicians who refuse to prescribe sustained or extended release opioids, supposedly because they are addictive. Yes, such opioids can cause physical tolerance, but I believe that if they are prescribed for the right indications and if they are taken like the doctor, pharmacist, or manufacturer says to take them, the risk of psychological addiction is very low, something like 1 in 10,000, according to a study I read somewhere in a medical journal.

I am afraid that if I complain to my doctor about the withdrawal symptoms or the side effects, he will wean me off or cut me off of Duragesic. Since only long acting opioids are effective against my severe chronic pain (from RSD or from Central Pain Syndrome), what will happen to me without anything to control this pain? I would just have to quit my job and become homeless with my two-year-old baby boy. I cannot let this happen; otherwise Social Services or Child Protective Services would be more than happy to take my baby away. This is something I cannot allow because I love my son more than anything else in this world.

Quote: "No one on this board can tell you what to do." I understand this, but I appreciate hearing about other people's comments, opinions, and ideas. I also enjoy the support I receive from them, support I do not receive from my family.

The medications I use at the present time are the following:
-Duragesic 125 mcg (one 100 mcg patch and one 25 mcg patch every 72 hours),
-MSIR 30 mg (one capsule once or twice daily, as needed),
-Flecaïne 100 mg (one tablet once or twice daily, as needed),
-Lidoderm 5% (cut off pieces of patch on my painful left knee, as needed),
-Keppra 500 mg (two tablets twice daily),
-Rivotril 2 mg (one tablet once daily),
-Relpax 40 mg (one tablet once daily, as needed),
-Celebrex 200 mg (one capsule daily until the 30-capsule box is finished),
-Paracetamol 1000 mg (similar to acetaminophen, one to four tablets daily, as needed),
-Inexium 20 mg (one tablet once daily, as needed).

Thanks for your answer, your support, and your information, which I appreciate a lot.

Priscilla

Hi , I came upon your comments about Ketamine treatment. I suffer from Fibromyalgia and am looking for anyone who had that treatment... Thanks