How's this for a neuropathy treatment plan?

[nicola smith]

(I posted this on another thread but thought it would get more visibility and feedback as a separate topic)

I just got back from the pain management clinic. After almost 3 years of painful but 'livable' neuropathy, I decided to ask my oncologist for a referral. I was told they were awfully busy and it was not likely they would take me on. However, in fact, I was seen within a month of making the request.

Bottom line, the clinician says they cannot eliminate the neuropathy but, with drugs, could get me to the point of being able to walk and bike comfortably, wear normal shoes, and get to sleep easily. I'll take it

The first drug they want to try is an anti-depressant - TCA or tricyclic. At a very low dosage of 25mg daily increasing to 50mg after two weeks. Side-effects: dry mouth, blurred vision, dizziness, nausa, constipation ( + for me) and increased appetite (definitely a no no). One also becomes a cheaper drunk. Apparently these side effects can disappear with tolerance. The instructions are to take it roughly 4 hours before one wants to go to sleep but that varies hugely by individual.

We try this out for a month.

If it's not effective enough, pregabelin, an anti-convulsant, is added to the TCA in dosages of 25-75 mg.

If these don't work, then we switch to cymbalta which is associated with weight loss (great!)

After that tramadol, an opioid analgesic.

And finally methadone, another synthetic opioid

I am not eligible for the anti convulsant, topomax, because it contributes to retinal thinning and I already have that problem.

Any comments from those with more experience?

Thanks

[ams5796]

Wow, that sounds like a ton. I was curious to open this thread but I don't think I'd like all that. Medical marijuana's supposed to be a good solution for neuropathy.



Ann

[helen098]

What shocks me is that none of my doc event mentioned a pain management doc and when I asked them after (well kind of questioned their judgment) not one would give me a straight answer
The best was the onc who said he was really happy that my pain was now under control, I said thanks I hope if you have any other patients in my situation you will share my story with them, my primary started looking up the uses of methadone on his phone.
neuropathy started mid Dec 2006 (treatment 10 of 12 i think) and it still here today.
My struggle took me through every type and combination of antidepressants and pain meds, vitamins
Tried Gabapentin, Neurontin, lyrica and cymbalta (plus two others i can’t remember the names) vitamins, B6,B12, Niacin, folic acid , patches, menthol and lyodicane cream
Tylenol with codine, vicoden and ultraset (many prescription for a lot of pills, ended up throwing out a lot of meds)
with all of the meds my pain was a 4 on the best days and 8+ most of the time, my onc keep saying it was a small price to pay....but i was feeling it was becoming too much of a price
i was thinking of thinking of doing something stupid, i couldn’t imagine living like this forever
about 2 years ago i went (at the suggestion and well butt kicking of my colon club family) and could have cried when i finally met a person who understood the pain and didn’t tell me to suck it up
even though i tried a lot of different meds he said there were still option,
he put me on 5mg of methadone once a day....other that the psychological issues of taking a med most people associate with drug addicts I am doing well. The methadone is a miracle drug for me (but I have been told it’s only given by pain management docs and when the others fail) . As long as i take the meds the pain is a one or less (down from a steady 8 or a best possible case sunny day won the lotto 4) unless it rains then everything hurts but I think that is just getting older (yea). it stops the pain and the shocks and my feet are less stiff.
Was told if it didn’t help or stops working there is surgery we can try where they cut your nerves
No side effects now- had some stomach and constipation issued the first few weeks but they are all gone now.
Don’t feel tired or hign or out of it....last year i had a lot of trouble sleeping and it was suggested it could ne the methadone...i stopped it and within 7 to 10 days the paid was back as bad as before and i was still tired...
It seems like the tiredness was good old fashion depression....the bad (not cancer related) situation passed and things are back to normal...though really do any of us ever get enough sleep?
the only annoyance now seems to be the pain management doc needs to see me more often (annoyed about the copy –but it really is a small price to pay), last month when i went to him he tells me they “i assume the insurance company” are making his life difficult when he prescribes methadone, he need to fill out a lot of paper work he needed to go over my history and previous meds again and says he will need to do a test. My stomach turned upside down and i said please no not the test where they shock you (i have had about 5 of these and they are almost as bad as when they cut out my colon), he looks at me like i am crazy and shakes his head, he says no i don’t even do that test i need a urine sample
i am so relieved and tell him as long as he is not going to shock me he can do/take any body fluid he wants...
he laughs and walks me to the front desk to get the cup

As my pain management doc says never give up, you DON’T have to live with the horrible pain
not having the mind numbing, soul crushing thinking of ending it all pain is priceless

if you want any more info just ask…I am so happy someone else will soon be in less pain

[sbrainbolt]

I was put on 30 mg/day of Cymbalta about 2 months post chemo. It was very effective and nearly eliminated all neuropathy in feet and totally in hands. I was recently weaned off because the Dr. wanted to see if my body had healed in the meantime. The first 2 months I was on the Cymbalta I lost weight about 13 pounds just fell off, unfortunately that was only temporary. I gained it all back before I weaned off. I was on Cymbalta for a total of 6 months. It was not easy weaning off of it, I had a lot of pain in my feet for the first 2 weeks, but eventually it went away and my feet feel the same now as when I was taking it, so I guess the Dr. was right my body healed itself as much as it is going to so no need to take anymore meds.

Side note about taking anti depressant for neuropathy... I think, no I KNOW this helped me in the area of depression and anxiety as well as neuropathy. Since weaning off, I am once again feeling anxious and emotional. I am hoping it will pass, but wow life seemed a lot more stress free when taking the Cymbalta.

Hope your plan works for you. It sucks to have pain in your feet. You kind of need them to do anything!

Susan

[nicola smith]

Wow, that sounds like a ton. I was curious to open this thread but I don't think I'd like all that. Medical marijuana's supposed to be a good solution for neuropathy.



Ann

yeah, but it makes me paranoid

[David Losh]

I'll put this here, but have said many times that Glutemine, in protein powders, helps with neuropathy. In my smoothie every day is a protein powder, the max recommended. My neuropathy isn't bad compared to others, and I have no pain associated with it.

[Kathryn in MN]

Is Amitriptylin the first one you are trying? I tried it for RSD/CRPS. I hated it. I also tried Topomax. I hated it. I also tried Lyrica. Hated it...

If you are considered "highly functioning," in other words, a Type A personality that doesn't do well with induced down time, these drugs are awful. If you are more laid back, you have a better chance of them helping you. For me, even the pain of RSD wasn't enough for me to stay on any of those drugs which took the edge off, but not much more... My RSD rarely flares anymore, but I do have permanent neuropathy in my feet. The problems with neuropathy flare when I'm on chemo and get a bit better when I get breaks. I've learned to just live with it.

It is worth it to try the drugs to see if they might help you. But don't expect that it is a definite that one of them will work. They do for some people, but not for others.

[Voxx66]

I've had serious neuropathy for years as a result of a spinal problem and have tried numerous things to try to lessen it. Here are the things that have worked for me and the downsides associated with them

Neurontin (Gabapentin) - this drug seem to work to an extent but has a number of odd side-effects including in my case severe depression and psychological effects. It doesn't do that to everyone however but it also doesn't work for everyone. Some say Carbamazepine (Tegretol) is superior but I haven't tried it.

Steroid injections - this works great for me but I think it is specific to the type of injury I have. It probably wouldn't work for this type of neuropathy.

Various supplements and vitamins - none of them have really made much difference so far as I can tell but everyone may be different.

TENS unit. - might work but I got tired of messing with it as I didn't find it particularly pleasing to use ha.

Exercise and massage - this is what I currently rely on it. The combo seems to work for me. It doesn't eliminate the condition but it makes it better.

[nicola smith]

I'll put this here, but have said many times that Glutemine, in protein powders, helps with neuropathy. In my smoothie every day is a protein powder, the max recommended. My neuropathy isn't bad compared to others, and I have no pain associated with it.

I took glutamine throughout chemo but stopped after. Perhaps I should start again.

[nicola smith]

I

Neurontin (Gabapentin) - this drug seem to work to an extent but has a number of odd side-effects including in my case severe depression and psychological effects. It doesn't do that to everyone however but it also doesn't work for everyone. Some say Carbamazepine (Tegretol) is superior but I haven't tried it.

Steroid injections - this works great for me but I think it is specific to the type of injury I have. It probably wouldn't work for this type of neuropathy.

Various supplements and vitamins - none of them have really made much difference so far as I can tell but everyone may be different.

TENS unit. - might work but I got tired of messing with it as I didn't find it particularly pleasing to use ha.

Exercise and massage - this is what I currently rely on it. The combo seems to work for me. It doesn't eliminate the condition but it makes it better.

Thanks for all these ideas. Gabapentin did nothing for me but create weight gain which I did not want. I am concerned that TCA could do the same so am taking it at night instead of during the day as I did with gabapentin. What is a TENS unit?

[nicola smith]

Is Amitriptylin the first one you are trying? I tried it for RSD/CRPS. I hated it. I also tried Topomax. I hated it. I also tried Lyrica. Hated it...

If you are considered "highly functioning," in other words, a Type A personality that doesn't do well with induced down time, these drugs are awful. If you are more laid back, you have a better chance of them helping you. For me, even the pain of RSD wasn't enough for me to stay on any of those drugs which took the edge off, but not much more... My RSD rarely flares anymore, but I do have permanent neuropathy in my feet. The problems with neuropathy flare when I'm on chemo and get a bit better when I get breaks. I've learned to just live with it.

It is worth it to try the drugs to see if they might help you. But don't expect that it is a definite that one of them will work. They do for some people, but not for others.

I'm definitely Type A so we'll have to see how it goes. The only other drug I have tried before TCA is gabapentin which was useless unless one wanted to gain weight. I'm hopeful I will find a drug that will help, but not betting the farm on it!

[Voxx66]

TENS - Transcutaneous electrical nerve stimulator - basically it's a unit that sends out electrical signals through pads - it's sort of an inverse ekg. Depending on the strength used it can be anything from a buzzing to a tickle to intense pain. The better units also can do ems - electrical muscle stimulation.

[nicola smith]

I've just finished my first week on 25 mg of TCA daily. I have to say that it seems to be having a positive effect. While I still have neuropathy, it is less pronounced and I am not constantly shifting trying to find a way to lessen the pain. I have experienced some dry mouth and insomnia but none of the other side-effects - yet. Tomorrow, I up the dose to 50 mg for the next three weeks before going back to the pain clinic for a follow up.

[Ron50]

Hi Nicola,
I have been ca free for nearly sixteen years. My neuropathy started around eight years ago . I was not on any of the chemo normally associated with neuropathy . I was on 5Fu and levamisole . I was given endep, neurontin, lyrica and morphine patches. None of them worked to any great extent and all had serious side effects for me. recently I was on methotrexate again for arthritis spondylitis and kidney problems. I had a major flare in the neuropathy ,it now effects both legs from the knees down and my left arm from the elbow down. My rheumatologist sent me to a neurologist to get a dx. He ran nerve conductivity tests and got a faint signal in my right leg and none in my left leg. He told me he had no idea what caused the neuropathy and that he knew of no drugs that could help me, in short he could not help me. My lower legs ache all the time and when I cover them at night they feel like they are actually burning. I am going to try a pain management clinic next . Perhaps they can use hypnotism . I will try anything. The only shoes I can wear are the old style cloth Dunlop o/c volleys and diabetic all day socks. Best of luck to you, Ron.

[nicola smith]

Well, I've been on the amitryptylin increased dosage of 50 mg since Sept 1. Although my lower limbs and feet still feel 'wrong', the difference is not at the front of my consciousness as was the case 'pre-drug'. In fact I have been able to go back to wearing 'almost-normal' shoes (flats but not heels) instead of orthopedic sandals. I call this real progress.

One side effect has been dry-mouth but this appears to be subsiding.

Of more concern was that for the first week or so, I definitely felt 'foggy', had difficulty finding my words, and made stupid mistakes without even realizing it. That side effect, too, is disappearing (I think!).

One side effect that has been really positive is constipation...any jpoucher will know what I mean! My frequency is now down to my old normal and I have stopped taking imodium.

Another side effect I do not like has been insomnia (weird since this is a drug that is supposed to cause drowsiness). I have found that a glass of wine or a cocktail in the evening helps counter this.