Nucynta seems to be working

Thanks to my amazingly dedicated doctor, I am now fairly comfortable *most* of the time when it comes to pain. My pharmacist recommended this drug and I’m sure he means very well, but I suspect he’ll get some kind of kickback for doing it. That’s ok I figure. Considering that it is working the best of all the pain medications we have tried over the last year.

Anyway! My pharmacist recommended the medication. My doctor called him while I was in her office to talk about the medication. The two of them then decided what dosage to suggest etc. We started on 50mg tablets. After the weekend I went back to report 150 mg seemed to do the trick. So she continued the prescription for 150mg x2 per day. All co-ordinated by my pharmacist who recommended it to begin with. THAT is how things should work imo. Doctors should be willing to investigate and research how they can help you best. Not sit on their asses and take your money for very little more than a hand pat and a shove out their door to make room for their next victim. :(

Nucynta is considered stronger than Tramadal (Tridural in Canada) but not as strong as Morphine. I don’t find I have that “high” feeling that I got on Oxycontin either. Nor were there any side effects I could detect. Constipation was minimal and far better than on Oxy or Tridural. As for the Tramadol-like quality, it works rather like Tramadol did. I just couldn’t get a high enough dose for Tramadol that worked for me (apparently the recommended dosage for Tramadol was only 300mg per day. It wasn’t enough for me). Currently I am on 300mg of Nucynta per day at 150mg x2. My pharmacist went even further and recommended 50mg caplets so that I could take only 2 at a time if I needed or 1 extra as needed, etc. That has worked out really well for me!

I still have bad pain days, but those days are less tramatic with less pain that I had before. The pain is NOT gone by any means. I still know it’s there, I just get relief longer than I used to. On a bad day, the relief can be 4-6 hours. On a good day I can get up to 10 hours of relief. Let me be clear though: relief does not mean the absence of pain but rather the level of pain low enough to be tolerable. I have even considered trying some light exercise to start tackling this hateful amount of weight gain.

I am only on week 3 of trying this new medication. As is my nature, I am not holding my breath. Nor am I over the hill ecstatic, yet. But I am recommending Nucynta to friends and anyone who reads this blog. ASK your pharmacist about this fairly new drug. The pharmacist is more familiar with medications than doctors because that is their specialty, so do talk to a pharmacist first. Especially if your doctor tends to want to deprive you of pain relieving medication. Go in with all the knowledge (and therefore power) you can get about this drug and why you think you should try it.

The exhaustion has not improved though. I am still utter exhausted by minimal activity. An outing to the doctor alone lays me out flat asleep for days. I am sleeping longer than I used to on the other medications (8 hours of continuous sleep last night!), but I’m still not feeling refreshed. I am still tired all the time. Can’t have everything though, right? lol

My heart goes out to all of you who suffer with mind blowing and soul sucking pain because they have apathetic doctors or doctors who don’t believe in FM (because they are freaking dinosaurs). Yet don’t think that Nucynta is THE drug that will finally work for you either. No false hopes for you from me ok? It may work for you as it has been (so far) working for me. I HOPE it will work for you too.

Much love and compassion to you and your journey to pain relief <3

May every day be filled with Sunshine and Smiles!

Feb 19, 2014 Update

I have been using Nucynta for several years now. Though the dose has increased to 250mg every 12 hours. I still do not experience any nasty side effects.  I can take two 50mg instant release (IR) pills for breakthrough pain if needed.

Something else I think important to note is that I do not suffer withdrawal symptoms if I stop taking it for a month or more – some months I just can’t afford it, even on co-pay. Not that it is insanely expensive, but I wouldn’t choose it if you did not have some kind of coverage to decrease costs. I tell every Fibro Warrior I meet about this awesome fairly strong opioid. I just wish it were easier for folks to get the pain relief medications they deserve.

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Comments

  1. Hi everyone, I can’t say the same I’m still in pain this is the longest I’ve had to go through this pain, I’ve been using this medicine now for 2 in a half weeks the only thing it does for me is put me to sleep makes me feel dizzy, :( I’m using 75gm, any other ideas I will continue to search for something that helps not to be pain free but jus to be able to deal with it.

    • So sorry to hear it’s not working for you Liz. Perhaps it’s just not for you. It took nearly 2 years of trying various medications until we discovered what was working the best. My doctor made it very clear to me that I would not ever be free of pain and that I should not expect that. If one does expect the absence of pain, then one is setting themselves up to fail. Perhaps adding Lyrica and/or Cymbalta (the 2 drugs that are currently approved for Fibromyalgia) will get you to something that is at least fairly comfortable where you can cope with the pain better.

      Thanks for stopping by Liz <3

      • Hi Shannon yea I’ve tried both and not working for me I was diagnose in 05 with MS then two months later with fibromyalgia the fibromyalgia is what kicking my butt I retired from work two years ago now the only exercise I get is walking my Yorkie Mr Maxwell :) and the only thing that bring joy to my life is church it bring sunshine to my life if it wasn’t for God I really don’t know where I would be…. :)

        • Lyrica didn’t do anything for me until we got up to 300mg a day. Even then my pharmacist tells me it’s still not near max dosage, so we could increase it more yet. I can’t speak to what you and your doctor have or have not tried. Though I’m not surprised to hear what you have tried isn’t working. So many folks I’ve met online have a similar experience. Pain is so hard to treat and very few doctors want the “hassle” of trying to treat a person with chronic pain.

          If you can, perhaps you can add acupuncture, massage therapy, trigger point therapy or one of the many other treatments out there that may help alleviate your pain. Such things are beyond my reach financially, but perhaps not for you.

        • Good morning Shannon yes I’ve try that as well :) thanks

  2. Excellent news. I have not heard of it in Australia and will check it out. I am on tramadol and get lots of break through pain

    • I’d definitely ask your doctor about it. Tramadol worked really well for me. But as a timed release medication, it just didn’t last nearly as long as it should have. I reached the max dosage very quickly and, like you, had too much breakthrough pain. Nucynta lasts longer. Still not as long as the indicated 12 hour dose rate, but a lot better. Sometimes I get 8-10 hrs of pretty decent relief. That said, flares are flares regardless of how good the medication works. While Nucynta works a LOT better than anything else has, I still have to cope with bad days. It’s best to just accept that I will never be pain free. Nucynta helps though, it helps more than anything else I’ve tried to-date.

  3. That's awesome news! Hopefully the longer you are on it the better you will feel. Maybe some refreshing sleep is on the menu next? Fingers crossed.
    I had an allergic reaction to Nucynta, I was so hoping it would work for me…. I have reacted to pretty much everything I have tried. Other bloggers have reported that it worked well for them, so there's a ray of hope for more sufferers.
    I think the crushing exhaustion is the hardest part for me, the pain never has been the worst part (even though it's terrible in and of itself), it's been the exhaustion and lack of hand function.  
    Hope things improve for you. Thanks for your blog, it is much appreciated!

    • Thanks for coming back Jazz :) I’m so sorry to hear about Nucynta not working out for you though. They are always making new drugs and technology keeps on improving, so there will *always* be hope hon. As for the “what’s worse” bit, it’s always been the pain for me. I’ve had this exhaustion problem for 15+ years. Maybe longer or even always? I could sleep anywhere, anytime – even as a kid. Sleeping was my favorite thing even. Perhaps my body knew all along that I need it. *gentle hugs* to you my dear!

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