Cymbalta not working anymore
 

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?

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.

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

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.

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...

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😳

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.

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

am about to try cymbalta
 

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!

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

I hope the doctor's office gets back to you, Jon.


It was suggested (I like my neurologist because of this approach) I could try Cymbalta.

For many reasons I passed and will again as my final determination for the time being. I do want some PT or some sort of focused activity where someone objectively records my status and potential exercises. I may be expecting too much, but I am still eating vegan and continue to get close to my "ideal" weight as to hopefully stabilize.

Susanne, Billylyne, Antonina, Jon, the room- I hope you all get a respite. I've had a brutal stretch. I use context an awful lot lately to at least focus myself a bit. Find that smile and hold on tight.

My best,

Jon

I called the doctors office today, they said they had called but was told at my work that I was on vacation for a week! Turns out we have three Jonathan's, and the operator got the wrong one! Anyway, the doctor av approval for the 60mg dose, I will wait until I am home again, before trying it, I am out of town visiting my Mom.
As far as side effects, the main one I get is intensenal pains, usually the day after, right before my next dose. I was really sleepy for about two weeks, but that went away. My mind is clear, no headaches, much better then when I tried Lyrica! I will have to see how things intensify by doubling the dose. Hopefully it will do something for the burning nerve pain!
I have been putting up with the pain for close to 30 years, but it does get old...

do you mean "intestinal" or "gut" pains? If so, sounds like you can live with cymbalta despite them.

Yes, sorry for the typo... The other side effect is the dry mouth, so I drink more water and use the special mouth wash. I had a real tough time with the other meds they gave me, but this I can live with, providing it gives some pain relief...

Hey Jon, I'm sorry to hear nothing is working to help with the pain. I was in the same boat ad you 3 months ago. Couldn't walk, or balance, and constantly in crippling pain. I have severe small fiber neuropathy. Then, as a last resort I tried medical marijuana(never liked it in high school, but I figured it was worth a shot).

Believe it or not, it actually works for me, extremely well. Not only am I mobile again, but I don't even need my cane!

Maybe it will work for you? Not sure if you live in a medical marijuana state, but if you do, I highly recommend giving it a shot!

Good luck,
Joe V

I have just had another course of lignocaine infusions and the relief from the horrid burning pain is brilliant, I am booked in for another infusion in 3 months.

Thanls for the suggestions, I will bring it up with my Rheumy when I see her next month. Medical marijuana sounds promising, but though it is legal here, might still have some social stigma about it.
The lignocaine also sounds promising, but with all this stuff, it varies on effectiveness, but they are worth a try.
So far, not noticing improvement on the increased Cybalta dose...

jon,

Stigma be damned if relief is possible. If you are in Colorado I will be in town 22nd-26th- I'll help break you in and cook a killer meal for after. ;)

I smoked it when I was a teenager, but like Clinton, I didn't inhale... :)

Unfortunately, they have found that marijuana and SLE Lupus, don't go good together...
http://www.rheumatologynetwork.com/a...sle-perilous-0

I'm no stranger to the plant, though this is a different bag of circumstances. I am thrilled to try out strains that have documented effects, understanding that it may not play that way with me.

So it goes.

I will be making the most of research that truncated week, though. I imagine the Christmas tree will be the second most lit object when I am in the room.


Jon

Well good luck with it! Have a very "Merry" Christmas!

Thanks, Jon. Hoping the 1:1 thc:cbd works so that I have comfort first.