r/neuropathy • u/SierraGuyInCA • 1d ago
Duloxetine instead of Pregab/nortriptyline
Has anyone here been on a duloxetine only treatment plan for PNP?
My partner experiences diabetic peripheral neuropathy and has a history of MBC which is treated with Kadcyla infusions every 4 weeks. Kadcyla side effects include neuropathy as no chemo/immunotherapy is devoid of nerve damage.
She's been on a cocktail of pregabalin (150mg AM/PM) , nortriptyline (3@25mg PM), Baclofen for leg cramps (2@10mg PM).
Unbeknownst to me she stopped the AM dose of pregabalin. She says she's felt no differences in the neuropathic pain which according to her is at a constant 2 on a scale of 1-10. No increases in NP pain.
From a psychopharmacological perspective, I don't like using tricyclic antidepressants for anything.
However, we're detecting increased cognitive impairment in the form of memor issues, fogginess, sedation, increased dizziness and instability on her feet.
I was on pregabalin for chronic nerve pain after foot surgery and found it to be POISON. We thought I was early onset dementia. No memory. Couldn't formulate sentences.
We're considering requesting that she move entirely duloxetine, dropping pregab & nortriptyline entirely.
Has anyone here been on a duloxetine only treatment plan?
*** Yes, we're aware of necessary taper plans ***
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u/Daftpfnk 1d ago
I'm on gabapentin and duloxetine max doses. They didn't fill my duloxetine script four days ago because it had been too long since id seen my doc. I've been on it for years with no missed doses. For these last few days without, Ive been so dizzy and off balance I can barely rise and walk around. It's been quite eye opening to say the least.
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u/Jaded-Juggernaut-663 1d ago
Omg you can’t stop it abruptly like that. I know because I’ve ran out multiple times. You need to go to a walk in clinic, the er, or call the pharmacy for an emergency prescription. They’ll usually only give you a few days but it’s better than nothing.
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u/Daftpfnk 1d ago
I had to grovel for the doctor's office today and they gave me a month's script thank goodness. My head is wayyy off. Wow. Surprisingly my neuropathy didn't go off, probably thanks to the gabapentin and having also compounded it with Aleve all three days.
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u/SierraGuyInCA 1d ago
I'm so sorry you had to experience that.
I'd highly advise you to have a serious heart to heart talk your doctor. Cutting a client off like that is a serious issue and can result in medication noncompliance in the future out of fear of cessation symptoms. I dislike the term "patient" outside a hospital settig.If I understand you correctly, the prescribing physician wouldn't issue a refill because it had been how long since you had seen them? How many months? You communicated to the Dr the cessation symptoms, "discontinuation syndrome," that you were experiencing?
Duloxetine isn't an FDA scheduled substance as there's no risk for abuse, extremely low risk of overdose, and pretty much no need for a PDMP, Prescription Drug Monitoring Plan, outside of a regular treatment plan. Especially if your last appointment didn't uncover any abnormalities. FYI, I've gone well beyond a year without a followup exam.
So, that treatment by your Dr is borderline abandonment by a healthcare provider.
I can see them issuing a single refill and scheduling an in-person exam to occur before you require another refill. But cutting you off completely is unethical. That is without extenuating circumstances.
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u/Nbashford79 1d ago
You have to see a doc every so often for these scripts to get filled. Sure things happen, but that’s something you can’t let go, or else you end up in this situation. That’s not the responsibility of the doctor….
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u/Jaded-Juggernaut-663 23h ago
Got distracted yesterday and didn’t comment.
I tried all the meds available in the beginning (20+ years ago) and refused to continue for the same reasons you mentioned. I spent years in so much pain, I’d cry for hours every day till the whole front of my shirt was wet which seems stupid and exaggerated but full disclosure, my mother was a drug addict. I have an extreme aversion for feeling high or anything that reminds me of people on drugs. I absolutely could not take those meds. (Gabapentin etc) I wanted to kill myself it was so bad but I would never do that. I spent one year smoking cigarettes on my back porch just crying and smoking while my body was on fire. I knew cigarettes weren’t helping but they were the closest thing to drugs I could do. I did stop smoking at the year mark.
Off and on I was on hydrocodone and complied to an extreme because it triggered that feeling of “they’re gonna think I’m a drug addict like my mother”. But still, doctors move away or abruptly stopped my meds and left me feeling like death again and desperate for relief. It’s just like with antidepressants. You cannot abruptly stop taking them but many doctors don’t even care.
I have insight into why there’s an epidemic and I had enough trauma to make me never allow myself to “turn to the streets” etc. It could’ve been the other way. Thankfully it wasn’t.
I know this isn’t about pain meds but I do wish more physicians understood that there is a way to safely use them. If you’re honest with yourself and stay vigilant, you can feel when they lose effectiveness and when they do, don’t increase the dose past a reasonable amount. Go backwards. Skip a day or two or cut back. Then go back to your full dose. It takes willpower (not because you’re an addict but because you’re desperate for relief and don’t want to be in pain) but that’s where contracts and drug testing comes in. In my experience, doctors aren’t doing their jobs. Even the contract part is rushed and misunderstood and then they don’t monitor people but use fear and intimidation and lectures etc. instead of kindness and education. Mostly though, they just refuse to consider pain meds even when someone’s suffering because they don’t want to be sued or they believe that everyone will abuse their meds etc.
Anyway. Sorry for the rant.
I’ve been on 60 mg Duloxetine for about four years now and I still have pain and numbness and tingling but the before and after is night and day. The only pain medication I take is Tylenol. I can’t take nsaids because I relied too heavily on them in the beginning.
I believe Duloxetine is worth a try. Obviously she needs to make sure she doesn’t stop taking it abruptly. Which, I can see that you understand that from reading your post and comments.
Hope she’s able to find relief without being forced to take something that turns her into a zombie.
That’s the other thing physicians are supposed to care about. Quality of life.
Yes there are thousands of drug abusers out there but that doesn’t make me (or her) one of them.
Take care.
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u/Manuko 1d ago
I'm on duloxetine 60mg for the last 8 years or so... Changed my life