What medication has worked best for your PN pain?

[bartland]

Trying to research the medications online is so overwhelming, with so much conflicting information. I would love to hear YOUR personal experience of which medication has worked for you?

Thanks,
Bart

[April]

Hi Bart,

Opiods are the most effective at reducing the pain. I took the lowest dose of a tramadol once a day for about two years. Its efficacy wore off a bit so the pain doctor moved me up to a slightly stronger opiod, again at the lowest dose and only once a day, and I took that for about a year. So that medication is effective and if you take a low dose and only once a day, it is easy to come off of---I don't even remember tapering, but I might have taken a half pill for a week or something before discontinuing it. I also took gabapentin for three years. I don't know how effective that was and it was much more difficult to taper off of. I had to slowly taper off of it. I would not go on that one again. I also took both amitriptyline and nortriptyline (but not at the same time). I think these were somewhat beneficial and they helped me sleep when my pain was disrupting my sleep. I had to taper off of them, but the tapering was not as bad as it was with gabapentin. I also on tried two medications for bladder frequency, and both worked very well (I changed because of an insurance issue not because I didn't like the first one). If you want the names of those, I can look them up. What medications has your pain doctor recommended?

April

[matthewroots77]

Hi
What are your symptoms??
Thanks Matt

[bartland]

Hi April,

Thank you so much for the detailed information. For some reason opioids have not been all that effective for my nerve pain. Tramadol did nothing, and oxycodone/hydrocodone has too little benefit for me to risk the addictive issues associated with it.

I had a horrible experience with gabapentin a few years ago so I am not comfortable ever trying that again. Marginal benefit and awful, awful withdrawal when tapering off...the taper period was 1.5 years of pure hell. have a doctor who has really been trying to get me to try Lyrica but it is so similar to gabapentin and has such similar horror stories online that I've been too scared to try it.

This far, interestingly the medicine I found to be most effective is Clonazepam, even though it isn't generally considered a "nerve pain" medicine, the effect is noticeable within an hour of taking it.

Recently I came across the idea of nortriptyline after researching it and amitriptyline and the other similar Tricyclics that are supposed to work for nerve pain as well as depression.

I guess maybe I'm trying to see if anyone's actually found Lyrica to be beneficial enough to be worth the side effects and the awful withdrawal, or if it is better to go with something like a tricyclic and if a tricyclic, which one works best with least side effects? Though I currently take Prozac so it seems like you're not supposed to take that and a tricyclic together. It is all very confusing.

Thank you again for any guidance you may be able to offer based on your experiences

Hi Bart,

Opiods are the most effective at reducing the pain. I took the lowest dose of a tramadol once a day for about two years. Its efficacy wore off a bit so the pain doctor moved me up to a slightly stronger opiod, again at the lowest dose and only once a day, and I took that for about a year. So that medication is effective and if you take a low dose and only once a day, it is easy to come off of---I don't even remember tapering, but I might have taken a half pill for a week or something before discontinuing it. I also took gabapentin for three years. I don't know how effective that was and it was much more difficult to taper off of. I had to slowly taper off of it. I would not go on that one again. I also took both amitriptyline and nortriptyline (but not at the same time). I think these were somewhat beneficial and they helped me sleep when my pain was disrupting my sleep. I had to taper off of them, but the tapering was not as bad as it was with gabapentin. I also on tried two medications for bladder frequency, and both worked very well (I changed because of an insurance issue not because I didn't like the first one). If you want the names of those, I can look them up. What medications has your pain doctor recommended?

April

[bartland]

Hi Matt,

My symptoms are pain in the perineum and gluteal fold and somewhat into the rear of the testicles, all on my left side. Everything fits the Nantes criteria, PN has been confirmed in multiple nerve blocks, and very notably I had pudendal nerve entrapment 23 years ago that was fixed by decompression surgery in 2003 and then came back with a vengeance in November 2023 after being pain free from it for 14 years. This is something I thought I was done with for life so you can imagine this year devastation emotionally.

Hi
What are your symptoms??
Thanks Matt

[matthewroots77]

Very sorry to here that,I'm still trying to find a diagnosis for my symptoms,I agree it's mentally draining

Thanks Matt

[29Mari]

Bart
For PN pain and PGAD I am currently using Amitriptyline at a low dose of 10 to 20 mg and find it much more effective with fewer side effects than Gabapentin. But it is an anticholinergic drug, so it comes with baggage. I try to take it only when my symptoms are flaring really badly.
For the bladder symptoms (tenderness, incomplete emptying, bladder spasms) I use prescription Pyridium 200 mg. The generic is Phenazopyridine and is available OTC, at least in the US.
Also the muscle relaxer Baclofen and lidocaine patches. And of course cold packs and heating pad.
None of these are particularly effective on their own but taken all together sometimes can calm things down.
My doctor recently prescribed a low dose of valium to use as a suppository. I find it works about the same as the Baclofen so I don't take those two at the same time.
I have tried treating the pain with various antidepressants over the years. Not much luck. Fluoxetine (Prozac) seems to have the fewest side effects but I am currently tapering off of it because I've had some horrible pain flares lately so I don't think it is helping with my pain at all. But my doctor was ok with my taking it along with the low dose of tricyclic, so check with your doctor and pharmacist...maybe the prescribing restrictions are dose related?

[bartland]

Thank you for letting me know you've had better results with low dose amyltriptline than gabapentin! What is the dosage of the baclofen suppositories you use? I've got some 5mg ones but couldn't tell if they were working when I took it 2 or 3 times a week...not sure if I should be using them regularly but was scared of dependency

Bart
For PN pain and PGAD I am currently using Amitriptyline at a low dose of 10 to 20 mg and find it much more effective with fewer side effects than Gabapentin. But it is an anticholinergic drug, so it comes with baggage. I try to take it only when my symptoms are flaring really badly.
For the bladder symptoms (tenderness, incomplete emptying, bladder spasms) I use prescription Pyridium 200 mg. The generic is Phenazopyridine and is available OTC, at least in the US.
Also the muscle relaxer Baclofen and lidocaine patches. And of course cold packs and heating pad.
None of these are particularly effective on their own but taken all together sometimes can calm things down.
My doctor recently prescribed a low dose of valium to use as a suppository. I find it works about the same as the Baclofen so I don't take those two at the same time.
I have tried treating the pain with various antidepressants over the years. Not much luck. Fluoxetine (Prozac) seems to have the fewest side effects but I am currently tapering off of it because I've had some horrible pain flares lately so I don't think it is helping with my pain at all. But my doctor was ok with my taking it along with the low dose of tricyclic, so check with your doctor and pharmacist...maybe the prescribing restrictions are dose related?

[29Mari]

The Baclofen is 10 mg but more effective if I use 20 mg But like you I'm careful how much and how often I use it. And I don't really like the way it makes me feel.