Living with Neuropathy - Welcome to the group

Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it...my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level...which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned........to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects.....my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead...go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

@tigreyes2004 - Nephropathy is a disease of the kidneys caused by damage to the small blood vessels or to the units in the kidneys that clean the blood. Peripheral neuropathy is damage to the nerves outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. More information here:

Peripheral neuropathy
-- https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

Diabetic nephropathy
-- https://www.mayoclinic.org/diseases-conditions/diabetic-nephropathy/symptoms-causes/syc-20354556

Hi Diane
Welcome! Happy to have you join the group. I began with 30mg of Duloxatine over a year ago and for me the toughest challenge was nausea and feeling tired. After a week I told my a Dr my worries and he said just give it another couple of weeks. I ate saltines, chewed mint gum and pepto tablets. Inevitably I got through the challenges but it took me a solid month. Eventually increased to 60mg and took in the evening to sleep off unwanted effects. I guess I was so desperate for the first step of help that I really stuck it out. Now that I receive other combinations of treatments for pain and I feel more in control mentally with my diagnosis, I often think of weaning off. Honestly though am concerned to do so in case it back fires and I feel the need to get back on and go through the readjustment process. Long term goal is always to reduce or replace unnecessary drugs...just don't know, how I will know??? Feel well today.
~Rachel

Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it...my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level...which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned........to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects.....my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead...go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

@jimhd
I never used the lidocaine cream but I used lidocaine spray for my tongue and cheeks. It worked good but didn’t last long.
I admire your resilience, that must be excruciatingly painful. I was/am very lucky that I never had the problems with anything touching my feet. Do you use Orthotics? I had some made when all this first started. They helped but needed lots of cushioning. Do you ever fall down. I always fell down if I walked to far, by far I mean the length of the mall. Thankfully that is better too. I have size 13 shoes too. You’d think my balance would be good as long as they are. They look like clown shoes.
Take care,
Jake

That you for that info. I am a senior so that is good Medicare will pay for it. The Mir a Lax is a little expensive. What do you think of milk of magnesia?

Hello Chris @artscaping and I appreciate your reply. The foremost reason the doctor prescribed Duloxetine was to, hopefully, help alleviate the tingling/burning sensations present mainly in my feet and lower legs and to a lesser extent arms and fingers. Relieving anxiety would be a plus as I do understand what you are talking about with the anxiety loop. I am to take a pill once daily but a time is not specified.
When your Dr. told you to take the listing of side effects with a grain of salt I think mine may have been saying something similar when he said to me...”after you read about the side effects you won’t want to take it.”
It’s nice to have John as a resident research expert — a valuable resource! Hope you had a lovely walk.

Hi Chris, are you currently taking both cymbalta and nortriptylene or did you change one for the other? Helen

Thank you Rachel @rwinney for your reply. As in your case, my doctor wants me to start with 30mg of extended release Duloxetine and then later increase to 60mg.it sounds like you are getting relief with other drug combinations which is great. What are the combinations you are currently taking and did you feel that the Duloxetine helped at all before you started another regimen? Hope you are having a good day!