What treatment for neuropathic itch from chemo worked for you?

An update for those of you with the same itch problem. My physical therapy oncologist said the itch is a form of neuropathy. Currently, I am 6 months post treatment and have reduced my dose from 300mg/day to 200mg/day. When I reduce it further I will open caps and halve them. The physical therapy oncologist thought I could go from 200 to 100mg/day but to me that is too big of a decline (I have read a tapered dose is a ideally a 25% reduction per week) and I really want to avoid side effects.
About 1 month ago I tried to reduce the 200mg/day to 150/day and started getting electric shocks in my feet at night so increased it back up to 200mg. I will discuss tapering with my oncologist at my next appointment.

@beebe
Hi Beebe,
I developed neuropathic pruritis not long after I finished chemo and immunotherapy infusions. I tried Gabapentin, but did not function well on it. The intense itching and pain were better, but not enough to endure the side effects of Gabapentin - I was dizzy, off balance, tired, woozy ... you name it! My doctor switched me to Lyrica. It has made a big difference. I take one in the morning and one at night. I have flare ups here and there, but not all through the day, as I did before. I don't know if that's someting you may want to talk to your doctor about. You may be in a good spot with Gaba and don't want to risk changing anything. Just thought I'd throw in what's happening with me.

Hi Sherlie,
Lyrica is pregabalin--right? Not sure what the difference is between it and gabapentin. What was the gabapentin dose that bothered you and what Lyrica dose were you switched to? When I taper off my current gabapentin dose I will probably open a capsule and divide the contents in two so I reduce the dose by 25% at the most.
Has your doctor offered you any opinion on how long the neuropathic pruritus will last? I am hoping it goes away someday, my oncologist is clueless. I have the honor of being his only patient who developed neuropathic pruritus from chemo. He has been in practice over 40 years!

Hi, Beebe,
I’m so sorry for the delay! I need to check in more often.

Lyrica has helped me more than Gabapentin. It is noted to be more potent, faster absorbing, and faster acting. It doesn’t cause the dizziness or head fog that I experienced with Gabapentin. I take it in the morning and at night. Gabapentin made me very dizzy and foggy. I have enough fog from chemo to add to it!

I have not been given a timeline for my neuropathic pruritis. Just that there is really no way to know - could be months, could be years+/- . Mine is so much better now that I messaged my doctor about lessening the dosage. Or stopping it entirely to see what happens. I haven’t heard back from him.

Be aware: Lyrica causes weight gain, bloating, constipation, and edema. That’s the main reason I want to get off of it. I’ve been miserable pretty much since before Christmas. I started Lyrica 3 months ago.

I hope this helps! God’s speed as you (we) deal with this crazy condition!
https://americanaddictioncenters.org/neurontin-abuse/gabapentin-lyrica

Wonder why my Oncologist prescribed Gabapentin over Lyrica. I would imagine that the Gabapentin is cheaper, but if I was asked do I want to spend a few more $$ to get relief quicker the answer would certainly not have been "No".
It would have been nice to been free of the horrible itch sooner, of course the Oncology staff have no idea how intense the itch is.
After I send this email I will go and cut down some of my 100mg gabapentin caps to 50mg and see how a 150mg dose/day affects me. Hopefully the itch does not come back like it did the last time I tried to lower my dose.
Thanks for your feedback!

@beebe i thought gabapenten and lyrica were the same thing

@sart
Lyrica is a brand name for pregabilin and is classified as a schedule 5, controlled substance, whereas gabapentin is not. The following is from a substance abuse website:

People often wonder why Lyrica (pregabalin) is a controlled substance while the similar medication gabapentin (sold under the brand name Neurontin) isn’t. The drugs are both analogs for the neurotransmitter GABA, are prescribed for largely the same conditions (epilepsy and neuropathic pain), and have the same side effects (fatigue, dizziness).

The answer is that pregabalin is more rapidly absorbed, has a higher bioavailability, and is more potent: two to four times as strong as a pain reliever and three to 10 times as potent as an anti-epileptic.[7]

Additionally, studies suggest that pregabalin is more likely to produce behavioral dependence. In a review of case studies of gabapentinoid abuse, symptoms of behavioral dependence—including cravings and drug-seeking—were found in 79% of studied users of pregabalin, compared to just 8% of studied users of gabapentin. However, most of the users included in the study had pre-existing or concurrent substance abuse issues, and the study authors concluded that in the general population, both gabapentinoids are “quite rarely addictive.”[8]

However, gabapentin, like pregabalin, does also have the potential for abuse among people with substance abuse issues, especially addictions to heroin and other opioids. Some jurisdictions, especially those hit hardest by the opioid crisis, have tightened controls on gabapentin accordingly. Alabama, Kentucky, Michigan, North Dakota, Tennessee, West Virginia, and Virginia have all made gabapentin a Schedule V controlled substance at the state level.[9]

@beebe when I first started with the awful itching and associated pain, I messaged my dermatologist NP. She suggested dry skin. I messaged her a couple of days later and told her I felt like I was going crazy- couldn’t sleep, no relief, all the things that you experienced! She referred me to a dermatologist that is more specialized. She has been fantastic. In the meantime, I contacted my PCP. They communicated and put me on a regimen of Gabapentin 3x a day, Zyrtec 1-4x a day, Eucerine cream for damaged cream. My derm also suggested I try Biofreeze if there were areas that needed a little extra push. As crazy as that is, it helps!
When I couldn’t shake the extreme head fog and dizziness, I asked to be put on Lyrica, which my PCP did. A derm can’t do that because it’s controlled. I took it 2x a day. Last week I spoke with my derm and PCP and asked to cut it back. So now I take it only at night. I will occasionally take Zyrtec. It dries me out significantly, so I only take it when I really think I need it.
One thing I’ve learned through this and other issues is to ask to be referred to a specialist in the area of concern. My oncologist is fantastic, but his knowledge of some things is limited.
I’m sorry that was so long!! I hope it helped!

@sherlie It sounds like you were fortunate in the referrals you got from your Dermatologist NP and that your PCP was willing to initially prescribe Gabapentin and then switch you to Lyrica. My PCP is more into referring than actual helping with an issue, I guess I can call her my referral hub!
My original rx for Gaba came from my oncologist, I was the first "itch" case he had in over 30 yrs of practice! Guess I am lucky he knew what to prescribe without referring me out of his practice.
Reduced my Gaba dose by 50mg this week and should know in another 4 days if the itch comes back. Crossing my fingers it does not. Then will wait 2 weeks and try another reduction. Thanks for the biofreeze tip, will keep that in mind if I get the itch again and have to wait for the Gaba dose to kick in.
Thanks for all of your help, it is reassuring to hear from you!

@beebe i’m so thankful I could be an encouragement. This provide us mess can be depressing. I sometimes struggle with all the effects I have from chemo.
When I was diagnosed, I thought after chemo, I would be a free bird. That was a year and a half ago, and I’m still waiting for that free bird moment! I continue to hold onto the truth of God‘s timing, and his grace, mercy, and strength to carry me on this journey! 🥲