Lyrica, Neurontin, what's next?

[RobinD]

I need help.:help: I took Lyrica since last Oct and then switched to Neurontin due to the side effects, weight gain, confusion, memory lapses. But the Neurontin has caused more weight gain and my feet feel like they are asleep-with pins and needles. But my IC is not hurting at all, so I hate to get off them, but I must.

My dr is looking into finding me something else, but he feels nothing else works as well as these drugs. Any suggestions on your drug of choice would be most helpful. I asked him about Tofranil and he said he is not familar with it and will get back with me.

I have felt so good on these I hate it that the side effects are causing me to get off, but every week I am gaining another pound and I can't seem to control it. I exercise for 50 minutes 5 days a week, but the weight is still there. What should I do next?

Robin

[turnaround]

Hey Robin, I feel your pain. Elavil has been my lifesaver, pain wise, but like you I have gained about 30 lbs. I a runner and am active every day of my life.
Your post bummed me out because my doc just took me off Elavil and put me on Lyrica saying the side effects are much less. From what you say, the weight issue will still be there. Good luck to both of us!!

[RobinD]

I know, this is really hard b/c you find something to help the IC but it causes other problems. Weight gain is not something I want to live with until I find out that nothing else will work.

I should have stated that I am on a low dose of Elavil too 10 mg twice a day. I don't think that is causing the weight gain b/c I think that is a fairly low dose.

I had such bad food cravings on Lyrica so dr switched me to neurontin and I didn't have those cravings but am continuing to gain weight. You might try the neurontin first. They are the same type drug, but Lyrica is the newer version of neurontin.

[RobinD]

I read a post where someone suggested Tofranil. Some of you that have tried that, did it help?

Robin

[OrlandoP]

I read a post where someone suggested Tofranil. Some of you that have tried that, did it help?

Robin


Hey all,

I am on Tofranil, although my report is that it worked great for the first couple of days, then my body got used to it, I upped the dose, same thing. At more than 30 mgs, I get retention.

I am on 10 mgs a day, strangely enough, I do think it helps with the depression (I know docs say this is impossible, but I am an odd duck with meds--I was about the 1% that gets constipated on Topamax!)

That said, you may want to try topamax. Some folks here have tried Topa and Tofranil as a stand in for Elavil and Neurontin, both of which cause major weight gain in many.

Some people don't gain weight at all, so for the gal about to start Lyrica, don't despair yet. For me, the constipation and weight gain just invite other health problems, so it's not an answer for me to simply go on drugs that make me constipated and gain weight.

I do find that my magic bullet on some days is Percocet. Depends on the kind of pain you are having. I get that dull, invasive kind of pain, not the shooting, throbbing stuff. The tricyclics and anti-seizures tend to apparently work best on the latter kind of pain, not my kind.

[OrlandoP]

Robin, I will tell you that in fact 10 mgs of Elavil can make you gain weight, particularly in use with other weight gaining drugs. My sis in law was in a bad car accident some years back, and has gone from obese to nearly anorexic with Elavil and Lyrica, then Wellbutrin and Topamax. Seems the more you add to the mix, the lower doses also add up. When she was on elavil and lyrica alone, no problem. In combo, the weight came on like a mac truck: 60 lbs in 6 months.

[e@zogg]

Robin, I will tell you that in fact 10 mgs of Elavil can make you gain weight, particularly in use with other weight gaining drugs. My sis in law was in a bad car accident some years back, and has gone from obese to nearly anorexic with Elavil and Lyrica, then Wellbutrin and Topamax. Seems the more you add to the mix, the lower doses also add up. When she was on elavil and lyrica alone, no problem. In combo, the weight came on like a mac truck: 60 lbs in 6 months.

i started a ton of new med's at once to try to get migraine & ic pain
under control i have been taking 10mg trofranil at bed & 300mg
neurontin also all i want to eat is sweets, nothing but sugar junk food
plus my eyes are so dry i think they my dry up & fall out of my head
(side effect) of the medication of course i too am terrified about
gaining weight
but we have to keep trying different med's till we find ones that will
work, with side effects that we as individuals can handle!!!
don't give up get trying and positive my doctor is sick to deatlh of
me but i'm not going to give up trying different med's till i find ones
that work!!!
sisters of ic unit:

[RobinD]

I started Tofranil Saturday after decreasing Neurontina and Elavil. I have been sick getting off these two meds. I have been nauseous and had a bad headache from withdrawing from them. I am hoping today I will begin to feel better, not to mention the IC is raging mad w/o any drugs to help it. Today I think my IC is better and hopefully I will feel better overall. It is rather scary to think a drug can do that to you. I pray :pray:the Tofranil will begin to take over and ease the IC

Anyway-BEWARE coming off these meds. I feel like I should have decreased these slower than I did.

Robin

[RobinD]

I have been on Tofranil for 10 days now and the IC is feeling better, not as good as it did on the Lyrica, but I have times when I feel normal again. I am getting constipated from it and my feet still have the pins and needles feeling. OH! I have lost 3 pounds! I am not craving food like I did with the other meds. So hopefully the 13 pounds I gained will be coming back off.

Those of you taking Tofranil, how much do you take? Should I ask the dr about increasing it to control the IC pain? Right now I take 10mg 3 times a day. Also, any suggestions on constipation?

Thanks
Robin

[Claredale]

I tried 3 of the nerve meds, Neurontin, Lyrica and Topomax last summer and couldn't handle the side effects at all. They definitely messed with my head very quickly. I was taking them for my "burning bladder" feeling that I had not dealt with at all in the 19 years of my IC, so it was definitely something that was tearing down everything that was finally working for me. I read about Prosed DS on here and that was an antispasmodic and it has been my miracle med for over a year now. I never could take Pyridium, and it had alot of the same symptom relievers. The nerve pain was gone and my freq/urg is practically like I don't have IC anymore, which I thought going every 2 hours was great after my interstim, but the Prosed has made me practically symptom free most days. Still issues at night, but the meds take care of that most of the time.

I know it doesn't work for everyone, but it would be great if you had the same results as me. I have no side effects except eye issues, but I am in my 40s, so it's hard to tell if my arms just aren't long enough anymore.

Hugs, T

[RobinD]

T, I have been taking Prosed DS for 2 years now and it doesn't help me with the pain. Not sure what it is actually helping since I am on several meds. But glad it is working for you. :smile tee

Robin

[Claredale]

I still take pain meds. The Prosed has allowed me to decrease them, but the Prosed has taken that nerve pain and horrid spasms away.

I hope you find what works! As you know already, it can be a tedious ordeal.

[hollynoel]

Hi Rhonda-

I read your post. I'm not sure what your diagnosis is, but I have vulvodynia.
I was on elavil and stopped due to weight gain. Now I'm on neurontin,
and I am experiencing the same side effects. I'm not sure if your interested
in herbal remedies, but check into St. John's wort. I am going to try it,
it is for nerve pain. It apparently has the same " trycyclic" properties as
elavil. I figure it's worth a try. I sympathize with you, I know exactly
how you feel. I lost 50 lbs through diet and exercise 5 yrs ago and was
able to keep it off until now. (Thanks to elavil!) I exercise 5-6 times a week for 1 hr. and really see no results. It really makes you depressed.

Just a side note, two medications that were suggested to me were
cymbalta and effexor. I have not tried either.

Best of luck,
Holly

[RobinD]

Thanks for the info. Right now I am on Tofranil and am doing pretty good, but I will keep your suggestions in mind.

Robin

[sleekgirla]

robin,
u said u were on prosed. the one thing the prosed might be doing for u is keeping u from getting any urinary retention. meds like elavil,tofranil and nuerontin and pain meds are all known to cause retention, so the prosed might just be keeping u from having it.

[sami4]

Norpramin or Desipramine has less side effects than the other tri-cyclics.
For weight gain Elavil was rated strong, Tofranil Moderate, and Norpramin mild.