Oxycontin Decrease

At my last med appointment, I asked my NP to decrease my oxycontin back down to 10 mg 3x daily. It's too damn expensive - went way up six weeks ago for no apparent reason (it was an increase of 24%, if I remember correctly). It's not that we can't afford it. We can. It squeezes other things, but I don't think the benefit I realized was worth the cost differential. I doubt oxy would make a significant dent in the pain unless I took a high enough dose that I couldn't function. I would rather function. You know, most days.

I fucking hate the pharmaceutical companies.


This Patient Perspective said...

I hear ya about the pharmaceutical companies.

Don't forget the insurance companies too, who continually increase rates and decrease their coverage for me! Ugh!

Anonymous said...

Wow! Great Blogs! No idea how I found this. You and I have a lot in common. I have pain X15 years. Saw Goldstein for part of them. Saw everyone. Dx: with PN Not DX: with pN Saw everyone, traveled to MD"s, married to an MD. Am an RN. Have 2 Children age 19 and 11. Pain started after the 19 yr. old born. Did have vestibulectomy. Best thing I ever did. Docs kept telling me don't. Have a pain doc. Now have interstitial cystitis. That sucks and can't figure it out. don't look sick which really helps in some ways and not in others. My stomach hates all the drugs. Live mainly on old tricyclics for pain. Looking for that magical cure. What's really wierd is my pain started just like yours and then one day got really bad and progressed until it felt like a curling iron was on my bottom! If you ever get sick of Andrew Goldstein go see Richard Marvel. He is very good. I am now seeing a new one up at Johns Hopkins Bayview, but she is a little new to the area. I would hold off on her. She a little better at IC. Write me anytime. Debbie wfrohna@pol.net I am 46 yrs old

Peanut and Me said...

Hey I just found your blog. I am 36 have a 3yea r old and was severely injured.by a pelvic pt resulting in severe PN my ob is recommending I see a PN specialist we live in LA, and were going to see Dr. Hibner in Phoenix. The injury happened 10 weeks ago I can t walk or sit. I would love to ask more questions if you are still online. This is really scary.

Kate said...


I went to your blog to respond, but the link under "Contact Me" is not working, so I'll try here.

I'm here, just...randomly. I'd be happy to talk with you, if you still want to.

It IS scary, and I'm sorry you're experiencing it. Did you see the specialist in LA?

Kate said...

Two months ago, my cost for Oxycontin went down 30% (so a month at 10mg x 3/day costs me about $65). I don't know why. I like it, but I don't understand it.

Anonymous said...


Thanks for blogging. This problem has taken you prisoner, your health, your marriage and your life have been virtually stolen, so it will bring you to tears. Along the way, however, you have made friends who hate what you are going thru, you have also gained many supporters and have inspired many. I read your entire blog more than once. Incredible how this small area of the body can reap such havoc on a person. Andrew Goldstein is a nice guy, I met him at a conference last year and I belong to a medical society, called ISSWSH, that he also is apart of. I live in the Twin Cities and previously worked in the Dept of Urology at Mayo; my ex-boss Dr. Deb Lightner, she is amazing and thought me most of what I know about the pelvic floor; I have also seen some of Dr. Creedon's patients. Six weeks ago I started working for MAPS pain clinic. I don't know who you are except for what you have written on your blog but you've obviously inspired me to leave this comment. I don't know how much I can help you, but if you would ever need help unraveling all of this and want to explore other treatment options, please consider an appointment with me at your next clinic visit. My name is Chris Reece, MPAS, PA-C

Anonymous said...

Kate, you need to go to the MAPS clinic in Edina,Minnesota. Dr. Stanley Antolak needs to examine you, do pudendal motor latency testing and a flouroscopic nerve block. If that block lets you sit then you'll have a form diagnosis. Dr. A. may need to do surgery. I had it and my life is slowly coming back. The burning pain in my rectum was gone the minute I woke up.It is a slow recovery and it took me 14 months of slow walking but now I can drive with a heating pad under my butt in the car and go to aqua size classes.I pace myself and then I rest when I get home. I was incontinent with stool for months but with each "flare up"...always caused by lifting something too heavy or climbing stairs, this is dissipating. There is hope. Get the surgery, let your body repair itself and get off those terrible drugs. I am getting laser therapy to break up my scar tissue and vitamin B1, B6 and B12 shots. It is helping. Good luck. You have to be your won advocate. I had to hire a registered nurse in order to get the surgery. No doctor would advocate for me. You may have to do the same. The surgery can help. I am 50% better and I believe I will be 100% better ina year or so.

Kate said...

Hey guys,

sorry to meet under these circumstances. I have never even commented on blogs or anything beyond Facebook before, but Facebook isn't the best outlet for this. This is a lonely pain, an embarrassing pain and a seemingly eternal pain. I had my gorgeous baby girl three years ago. There were so many complications that I know I am lucky to be alive. That being said within one year after I had her I was diagnosed with pudendal neuralgia. I have had countless surgeries, procedures, injections, exams, etc. It is so easy to lose hope. I just started looking today at different blogs and websites that may lead me to the right answers. I would do anything for relief. I have the chair cushions that help ad other modifications around the house, but let's face it-in this level of pain a cushion isn't effective. I need help and it seems that you guys know who to see. I live in Pa, but regularly see a doctor in MD. It is excruciating to travel, but I will. I want my life back. I see other girls having their second and third child already and though I am beyond blessed, I can feel myself filling with resentment-that is not who I am. I want to take my daughter to the zoo without being debilitated for days. Please if there is anyone who can recommend a doctor, I will travel. Please.I am just taken captive by something so scary and bigger than I am. I need to know there is help or options. It does help to see that I am not alone, but it breaks my heart that other people know this pain, as well. I am not typically a complainer. If anyone can contact me with advice on who to see that would be beyond appreciated. I have had nerve block, CT guided nerve blocks, attempted spinal implants, Botox injections, surgeries, a vaginal skin graft/reconstruction, and the list goes on. I've taken Lyrica, Cymbalta, Tramadol, Oxycodone, and that list goes on for pages. I have had physical therapy, but that was terrible. I need to know that this will not be my future forever. I work, and go to school, fortunately both online. I'm lonely and scared and looking for answers. If anyone out there can help. Rosiepbr13@gmail.com

JESSICA said...

I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.