[Jon_sparky]

Hi,
I had good results with it at first, but after a month it stopped working for the PN pain. I am only taking 30mg once in the evening. I will call the doctor tomorrow and see if I should taper off, or increase the dose. No sense in putting up with all the side effects if it isn't helping for the pain. I am not scheduled to go back to the Rheumy until January. My Neurologist has dumped me...
Not many options left for PN pain control, already tried Gabapentin, Lyrica, and topical cream. Opiates have no effect on the neuropathy pain... What else is there?

[Susanne C.]

There are some studies that show morphine in combination with Gabapentin to be effective for neuropathic pain. Effective in a study like this means that at least 30-50% of the subjects showed improvement. Nothing takes away all of the pain all of the time, or works for everyone, but it has worked well for me for several years. I have CMT, with significant muscle wastage so some of my pain is muscular, some is arthritic, and the rest is neuropathic.

I do not know if you have tried combining medications, but from what I have read most neuropathy sufferers end up on a cocktail of several medications, one rarely seems to do the job well enough for a decent quality of life.

I believe there is something out there that will work, but too much depends on the knowledge, creativity, and compassion of your doctor. I hope you get relief, and soon. Prolonged undertreated pain seems to be a problem all it's own with serious consequences.

[Billylyne5]

I have just started a course of 3 lignocaine infusions, I found cambamazipine worked really well but it affected my liver so had to come off it, still trying to find a good replacement I am hoping the lignocaine works, otherwise I am not sure where to turn. Cymbalta didn't do much and the side effects were awful, gabapentin seems to have stopped been effective. Hope you find something to help

[Jon_sparky]

Thanks for the info!
My Rheumy never returned my call about increasing Cymbalta, I think she is trying to train as a Naturapath, probably tired of giving out meds that don't help. I would rather she just told me, then I would seek out a new Rheumy. Doesn't seem like my doctors care much about helping with the pain. I think they are hoping that getting the SLE under control might help with pain management.
My old Rheumy was talking about a combination of meds, like you wrote about, but then she retired... With all the flack they are getting about prescribing analgesics, it is no wonder they want to run the other way!
I have had this PN pain for several years, but it is getting harder to cope.

[Jon_sparky]

Still haven't heard from my Rheumy regarding the Cymbalta, I can really pick the doctors! Maybe she is hoping I will dump her and get a new doctor? I originally didn't go to her, as the Yelp reviews, said the office help were rude and never returned there calls. When my old Rheumy retired I was referred to this one, now I see the Yelp reviews were true!
I am wondering if I should just titrate off Cymbalta, as it is having no effect on pain reduction? Is it worth all the side effects with no benefits? You can see why she doesn't want to call back...

[Billylyne5]

I stopped cymbalta because of the side effects, it's up to you if you stop or not, but if you want to try a higher dose it makes sense to wait to speak to doc. I hated it made me feel yuck.
My lignocaine infusions are definitely helping.
Sorry your docs are not very helpful, my neuro is fairly dismissive and not much help, I think it's frustrating for them to not be able to do much, not as frustrating as it is for us living with it though😳

[Susanne C.]

I wonder if any of them think about how their frustration affects us. I went home and cried when my neurologist dismissed me. Here I was with a progressive, painful, crippling disease at 48 and no doctor to work with me beyond pain medication which I know I am fortunate to get. Ît seems so unreasonable that I feel like it must really all be in my head, except that so many of us have exactly the same experience.
My greatest need is to be periodically reassured that my weakness and pain are consistent with my test results, and I do understand that she didn't go to school forever to do that, but it would mean so very much to get 15 minutes a year of confirmation, with an EMG or skin biopsy thrown in once in a while. The trend in medicine and insurance seems to be that once you have a diagnosis that is progressive and incurable you are done. It is all checklists and cost benefit ratios, and it isn't going to get any better.

I am sorry that you are not getting more attention paid to your dilemma, Jon. They hand out Cymbalta and similar medications like candy but they can have more side affects and be harder to discontinue than opiates.

[Billylyne5]

Personally I haven't had a problem getting off any of the drugs they have dished out, maybe I was lucky

[antonina]

but I'm rethinking it since many have complained about unpleasant side effects.

what were the side effects you experienced?

thanks for sharing your cymbalta stories!

[Billylyne5]

Nausea headaches and basically feeling badly hungover all the te, and as it didn't seem to help the pain reduce significantly it didn't seem worth feeling dreadful