Tuesday, November 5, 2013

Fentanyl Patch - does the generic patch work as well for chronic pain as the name brand?




OK , Now that was how most of my days last month went when my insurance company made me go on the generic form of the Fentanyl patch for the month to prove that the name brand that I had been using was worth the extra $35 a month. Yeah that's right. $35 a month so I could spend a month in agony.

I know. Some of the Drs out there, and maybe some pharmaceutical reps, will say "There is no difference between the name brand medications and the generic formulations."


YOU try living in chronic pain and having your main source of relief switched to a generic brand and see if you agree. Maybe for some people there is no difference. And I will admit that for some drugs and for some diseases and issues there is no or is little difference between the name brand and the generic medications HOWEVER, for about 40% of them there absolutely is!

40%? Where did you get that???  personal experience and patient submissions, no studies or articles so don't quote me. Share your own experiences if you like here and I will post them.

I will say that FOR ME, the generic patch at 75 mcg was about the same as about a 25 mcg patch for the first two days and it felt like a band-aid for the third day. It was hell. The first week was bearable, the second and third weeks were extremely difficult and the last week was very very rough but at least I knew relief was coming.

Now I have been back on the real patches for 5 days and it is beginning to get better but here is what those guys don't understand. There is a c u r v e involved. Like a learning curve for people learning a new skill or children learning to read, with medications, when you go off a pain med, it takes a while to get back up to speed, it isn't like a light switch that suddenly is turned on and bang! All your pain is gone again because you are on the better medication or the right dosage.

When you get taken off of the correct dose or the medication that is working well for you, for whatever reason, your pain levels go up , you can go into pain spikes or flares, and that nice even keel of pain management you were on takes a while to get back. It doesn't matter if you were holding onto a pain level of 5 or 9 every day, if it was the SAME every day it was easier to manage than if it was an 8 one day , a 7 the next, a 9 the next, a 6 the day after and so on. You adjust your mental picture and your daily routine to your pain level, you plan your future routine and activities to your pain level, etc.

Not to mention when you have weeks-long pain increases, due to being taken off of your regular pain medication because the insurance companies want you to go through their hoop-dee-hoops to prove what you and your Doctor already know, your normal physical therapy regimen gets tossed all out of whack.

For me and my better half that means walking most days of the week. People always say to us "Didn't I see you guys walking ……?" Yes probably. We are always walking because if we don't it increases both of our medical issues. it isn't easy to get ourselves out there many days, much easier to stay inside and sit on our tushies but not in the long run. Use it or lose it very much applies to CRPS and other chronic pain diseases, MS, etc. Plus, after being in a wheelchair for a few years I never want to go back there so I walk whenever I can even when it hurts a lot, and it does. And last month boy did it ever hurt. But I have to admit I missed more days than I wanted to and simply could not walk as fast as I was used to, because of those dern patches.

And I was already messed up due to the fall down the flight of stairs I had taken at the end of July. I lost an entire month there when I simply could not walk further than around my house except maybe once a day down the block with my cane, again. I was able to lose that cane after a month or so but the extra pain of that fall will be with me for many months yet.

I am not complaining, although it may seem that way. I am far better off than so many of the people who write in to us at American RSDHope. I feel blessed when I read some of their stories and I try to sound encouraging to them.

We try to share with them the positive stories of volunteering and working with the kids, how much that helps us. People ask us how can we do that, being in pain? My answer is simple. We hear from parents of little kids and teens who suffer from this horrific disease called Complex Regional Pain Syndrome every day. They tell us how much their children suffer, how they can't go to school, play like "normal" children, how they as parents feel so helpless and ask us what they can possibly do to raise awareness and understanding? What can they do to help their children?

We help them. We call them, we email them. My Anjanette, my mom Lynne, myself. Every day or most days. As our bodies allow. Some days we can do more than others. We have other people we can call on to help us, other volunteers, other family members, friends. But the answers are still all very difficult because this disease, as all of you out there suffering with it know, is extremely difficult. It is the most painful form of chronic pain that exists and has been since it was first discovered and studied during the Civil War.

So why do we volunteer with kids? To remind ourselves that not all the kids out there are in pain. To hear their laughter, to be surrounded by their joy and be replenished by it. To remember that for most kids the biggest problems they face is when Joey poked them during small groups, or Suzie took their favorite book during reading time and wouldn't share, or that David has a tough time pronouncing words that start with the letter L. It's our breather. It is the same reason we love going to church, to have our faith renewed, be surrounded by friends and family, by all that love and warmth, and to be reminded that no matter how big our problems seem at the moment, God is always beside us. For me, faith guides me , renews me, and has been there to keep me going these 39 years through this disease.

I am sharing this story because it aggravates me that we still have to jump through these hoops, to dance this "even though your pain medication is working beautifully for you we need you to try this less powerful medication that will result in your being in more pain but it will only be for a month, then you can go back to being in your regular amount of chronic pain" substitution dance, just because that's the way it's always done.

There has to be a better way to do it. I don't know anyone who works in this part of the insurance company who might be in a position to change things. Perhaps you do, maybe it is even you yourself?

Just sharing my experience.

Peace and freedom from pain, it is all we seek


Keith Orsini, CRPS Survivor (and fibromyalgia, and failed back syndrome , and
well, we'll stop there;-)
American RSDHope

1 comment:

CaliGalLA said...

i know for a lot of my medications, anxiety and depression, the dr had to DOUBLE the mgs when i went on generic...

there is NO WA that generic could be the same as name brand...otherwise, there would be NO name brand pharm companies...recently, my ambien (zolpidem, generic) has stopped working, so i'm going to try requestiing name brand and hope it's not too muchmore expensive...

oh, and i have been told by NUMEROUS pharmacists that there IS a differene...