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Posted By : Camride - 4/5/2017 7:35 PM
Hi, first time posting here. I'll give you all a brief history before I go into my questions. I'm 35 and have had chronic, severe headaches since I was 18. I was diagnosed with an Arnold Chiari malformation and had surgery (suboccipital craniectomy and C1 lamenectomy) in 2002. It didn't help. I had a trampoline accident when I was 13 and eventually caused C5-C6 to herniate and I got them fused in 2004. That also didn't help. I saw everyone possible and tried every alternative therapy I could find with no help. Up until 2010 I did not have a diagnosis and no one could tell me what was causing my pain. Eventually I moved to NC and saw a new doc and was diagnosed with occipital neuralgia. I have RFA procedures done on my occipital nerves when I can and they help (70-80% pain relief), but they don't last long (2-4 months) and it's a fight with insurance every single time.

Up until the end of last year I had been using Nucynta and was very happy with it. I'm one of those few people who it works really, really well for. I get almost no side effects and can work without too much compromise. Unfortunately my job/insurance changed and I now have an incredibly horrible HDHP plan and can't afford Nucynta. Between the ER and IR it was costing me $1600/mo (almost my freaking mortgage payment).

I switched to fentanyl patches which I hadn't used in a really long time. First attempt to switch had me puking for 3 days straight (50mcg patch). I tried again about a month later after I found out you can cut the Mylan patches to limit the dose, so I was able to slowly build myself up. I'm now completely over to the patch with 75mg Nucynta for breakthrough but it's not ideal. I don't feel like the patch works that well for me, though I'm going to try going up to 75mcg for next month unless I get a better suggestion before then.

Given how well Nucynta worked for me I wanted to see if anyone knew of an alternative that was generic or not ridiculously expensive. I'm looking for another job to try to get better health insurance, but until then I was hoping to find something that might work better. Once I have decent health insurance I'll probably go back to Nucynta.

Thanks for any advice!

Posted By : straydog - 4/5/2017 8:12 PM
Hello & welcome to the forum. Here on the front page is a thread about Fentanyl patches. If you are not getting much relief it could very well be the particular brand you are using is the culprit. We have had many conversations here before over this. In all honesty, comparing Fentanyl to Nucynta is like comparing apples to oranges. Fentanyl is much more stronger than Nucynta. I suggest contacting our pharmacist & asking if a generic is available, I have not heard.

I was on Fentanyl at one time & the info sheet stated not to ever cut the patch, that can lead to too much of it leaking out & cause a person to overdose.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : rocckyd - 4/5/2017 8:54 PM
I was told that the Mylan patches may be cut, but that's the only brand.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : pitmom - 4/6/2017 5:23 AM
You might try contacting the pharmaceutical company that makes Nucynta. They may have a program for people that have a hard time affording the medication.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : Camride - 4/6/2017 5:58 AM
straydog said...
Hello & welcome to the forum. Here on the front page is a thread about Fentanyl patches. If you are not getting much relief it could very well be the particular brand you are using is the culprit. We have had many conversations here before over this. In all honesty, comparing Fentanyl to Nucynta is like comparing apples to oranges. Fentanyl is much more stronger than Nucynta. I suggest contacting our pharmacist & asking if a generic is available, I have not heard.

I was on Fentanyl at one time & the info sheet stated not to ever cut the patch, that can lead to too much of it leaking out & cause a person to overdose.

Take care.


The Mylan patches can be cut, I know the gel packs cannot. I don't know about any other brands as I have only used the old gel packs and the current Mylan version. But yes, Fentanyl and Nucynta don't really compare well which is why I'm having a hard time finding something else to use. And I've read through the Fentanyl thread but I'm not really having any of those problems. The patches stick fine as long as I apply them after a shower or clean the area well. They don't typically last the full 72 hours they say though, so I end up having to put a new one on after closer to 60-65 hours.

rocckyd said...
I was told that the Mylan patches may be cut, but that's the only brand.


Correct, the way the Mylan patches are made the dose is controlled by the size of the patch. And since the meds are in the adhesive there's no pouch, it's just a flat piece of plastic with an adhesive/medicine layer.

pitmom said...
You might try contacting the pharmaceutical company that makes Nucynta. They may have a program for people that have a hard time affording the medication.


I have, they only have a discount card and it's meant to be used with good insurance that has a normal co-pay. I'm using the card, but it only takes up to $150 off, which doesn't help much on a $1600 bill unfortunately.

Posted By : straydog - 4/6/2017 6:41 AM
Another thought is have you tried the gel type patch? You might get better relief with the gel type. May be worth trying. The cost of medications is ridiculous even with insurance.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Camride - 4/6/2017 11:26 AM
straydog said...
Another thought is have you tried the gel type patch? You might get better relief with the gel type. May be worth trying. The cost of medications is ridiculous even with insurance.

Take care.


Not recently, I'd need to check the cost though. The Mylan patches are only $60/mo so that's reasonable, but they're generic. Not sure who makes the gel patches now, when I used them it was duragesic only and it was expensive. I don't know if I'd want to give up the ability to cut the patch though, as it was crucial to allow me to take this medicine at all as it was the only way to manage the initial horrible nausea. It would also be crucial for getting off it if I need to move to something else, as I've heard fentanyl withdrawals are pretty bad.

Posted By : pitmom - 4/6/2017 11:53 AM
Have you used Bing or Google for Peoples Prescription Assistance? I used to use them for one of my meds. It's worth a try.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : straydog - 4/6/2017 12:31 PM
Camride, getting off Fentanyl can be a tough one. The conversion to something different is where most have issues. Its an excellent pain reliever but like most of our meds they all come with a price one way or the other.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Bmerib - 4/18/2017 2:17 PM
Hello I am new to the board. My name is Meredith and I have Crohn's disease since I was 11 and I'm currently in my 40's. I had 8 intestinal surgeries and tried every medication and finally ended up in pain management bc I was in danger of Short Bowel Syndrome so they couldn't operate. I was down to 90 pounds and this was 10 years ago. I was doing really well on pain management. I also have pelvic floor dysfunction which I get trigger point injections and Botox injections for. I used to get the Botox injections under anasthesia bc I have such a severe case and my muscles were more relaxed under anasthesia so the treatment worked better not to mention it's very painful when awake. Now my insurance company is denying to do the treatment under anasthesia. I also have gastroparesis which I get Botox for and endometriosis. I also have a spinal cord stimulater from Medtronic. My Pain Management doctor is in NY and he used to be very aggressive. However with the new guidelines he is lowering my medications to almost nothing. I am on a 100 mcg fentanyl patch which is eventually going to be lowered to 25 mcg. I won't be able to function anymore. Is anyone else xperiencing this with their pain management doctors? I used to be on fentanyl for breakthrough pain but my insurance company refused to pay for it so I'm on Dilaudid now which doesn't work very well as it is and even that is going to be lowered in dose. Does anybody have any suggestions and is anyone experiencing the same thing with their doctors? Apparently the govt put new restrictions in place and aren't letting the doctors give the medications like they used to.

Posted By : straydog - 4/18/2017 4:49 PM
Hello & welcome to Healing Well. Has your dr filed an appeal with your insurance company to see about having the injections with anesthesia? If not, he really should do this on your behalf.

What your PM dr is telling you is true. He is not giving you the run around or anything like that. I am assuming you have not kept up with all of the changes that has been going on for 6 years or better. The CDC, DEA & NIH have been collaborating on treatment of chronic pain & what they have termed of over use of opioids. We all agree that the pill mills needed to be shut down, however, in the midst of this the impact of treating chronic pain patients has taken a huge hit. Over the years we have had hundreds of people come through here asking the same questions you have asked. I could probably write a novel about all of the changes over the years, however, the owner of HW pays for space for us to post so I will not use up the space.

There is now a prescription monitoring program in place across the country. This is a database full of information about what drs prescribe to each patient, how much & how often & who the patient is. Drs that do not adhere to the guidelines are flagged & stand the possibility of losing their license. So, yes treatment of chronic pain has changed & drs have had to change their prescribing practices. I suggest that you subscribe to the CDC's website so that you can read about this & stay up to date on things.

The most recent thing I read about last week is the CDC is now recommending that drs only allow 7 days of narcotics for acute pain. Last year they told surgeons 14 days of narcotics after surgery. It is a sad environment for chronic pain patients.

Switching drs will not solve your problems either. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Mercy&Grace - 4/18/2017 5:14 PM
Have you checked to see what the price would be at GoodRx ? There is also another site, but I do not know anything about it. They are suppose to have low prices like GoodRx does. The name of that site is BlinkHealth.

Posted By : Bmerib - 4/18/2017 6:18 PM
Thank you Susie for updating me on what is going on with the pain management guidelines. I did in fact read up on the CDC page at your suggestion and it's at least helpful to understand these new guidelines. It's so horrible that there are so many people out there who didn't need these medications and/or used them carelessly. It's also so wrong that so many doctors prescribed these medications without using better discretion. I found out my doctor was getting a lot of money in kickbacks for prescribing certain medications which really shocked me. It's terrible though that those of us that are really suffering are paying the price because of all of this but as you said it best why waste space on this topic.

As for the anasthesia with the procedure my doctor appealed for my Botox injections 3 times and each time it got turned down. However I recently learned that patients are getting these procedures paid for by the insurance companies if they claim to have either needle phobia or severe needle phobia. My doctor gave me the actual insurance codes for this disorder and supposedly my Pain Management doctor has been getting procedures approved under anasthesia. I figured I would post this in case anyone else is having any similar problems. This sounds completely and totally ridiculous to me but I am going to see what happens when my doctor tries submitting for the procedure using these codes. I wish everybody on this board the best of luck with what they are going through and I hope you all receive some relief from your chronic pain. I know from personal experience it's not easy.

Posted By : kailey sims - 4/24/2017 4:54 PM
Are there certain points when you pain increases or is it caused by anything in particular? As an individual who has suffered from chronic back pain due to long hours standing and who has been perscribed various medications, I found that using different muscles when standing really helped. There are a ton of different mats that you can use in your kitchen/ your bathroom/ at your desk on the market that help shift the weight from your back and make other, stronger muscles in your body take on the load. the one I use at my desk has a slope and therefore forces your hips thighs and calfs to take on most of the load. I got mine on amazon, its called the equilibrium1 platform, but like I said there are a ton of options. Anyhting that can take the weight off the problem areas while standing REALLY helps. I know that most of what has been discussed here is around medication, so sorry if this is a little offside.

I also suffer from migraines, and I think some of what causes this is my back and neck pain. I have found that a bit of pepermint oil on the neck and temples instantly alleviates the pulse. Whatever you can do to allievate the neck pain will help too.

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