Neurontin "Gel"??just got prescribed today

[sleekgirla]

Hello My gyno prescribed me 6% neurontin gel to use 3 times a day today. Does anyone else use this and does anyone know if the regular side effects such as weight gain and tiredness happen with the gel since it just goes into the part of your body you apply it to and not your whole system?? Thanx for any adivce and replies.

[IC SARAH-CPP]

Whoa, never heard of this before. I hope it works! let us know.

Sarah

[sleekgirla]

I was talking to the pharmacist who compounded it today and he told me that a lot of doctors are unaware that you can compound drugs and just apply them to the part of the body that hurts. I could not believe that is not more well known. they can give people lozenges or throat sprays to use for chronic headaches instead of pills. I brought up to my gyno who treats IC about the neurontin gel today because I had seen on this site where one other woman is using it. so I do hope very much that it works! I can now have the good effects of neurontin without as much of a chance as having the bad side effects. yay! my uro was even okay with trying me on the dextroamphetamine next. she says she thinks it is simliar to the name brand drug called adderall I think used for adhd. but I really hope the neurontin gel works!! but if I print out stuff the women on heres stories about using dex I know she will work with me on prescribing. Now that I have found a doctor who wants to work with me I have so much new hope. I wish everyone luck in finding a really good doctor if you have not already been so blessed.

[sleekgirla]

anyone? anyone?

[ICsmiles]

sounds wonderful hilary!

i am jealous of you because of your uro! My local urologist looked at the dex studies I brought him and said sorry, there is no way to prescribe that. He never knows about any of the IC research; I always bring it to him. The only thing he wants me to do is get an Interstim. I am very wary of that because my main problem is pain, not urgency and frequency which it is approved for. I think he is financially rewarded for doing the Interstim surgery but not for any of the more holistic approaches I ask for.

I will research the gel = wow, I would try neurontin again if I could do it this way. As a pill, it made me drowzy and zombie-like. I could not work or be a mom on that stuff!

[justice4j]

Hillary,
That is very good news! So glad you have a doc that is willing to think outside the box. It is so irritating to hear from all the patients here who don't have a doctor willing to try new and innovative treatments. Boo Hiss on them.

Is the Neurontin gel applied vaginally or into the urethra? Is it expensive?


I cannot wait for the Hubbard FDA Dex study to be published. Hopefully that will put an end to some of the fear doctors have Rxing it. Psychiatrist seem to be the only specialty comfortable with Rxing it, with a few compassionate, wise exceptions.

If you do try Dex, IMHO (discussed w/ your doc of course) Adderall is not a good idea. There are 2 salts - saccharate and aspartate in it- along with beads that provide the sustained release property. Aspartate converts to aspartamine in the GI tract. Aspartamine is an artificial sweetener that is death to IC bladders in terms of pain.

Also, dexstroamphetamine sulfate is available as a generic and will have a much lower co-pay for most people. Additionally, when you begin titrating your dose of Dex to see what dose you need, with 5 mg. tabs you and your doc have much greater control over how much you raise or lower the dose.

I started out with 5 mg. and another 5 mg. 4 hours later. I'd been in a flare for close to 2 years with IC/IBS and I had to take Lomotil to tolerate the Dex at first - D is a side effect. But, with some patience and persistence, I've been able to tolerate 15 mg. twice a day. I have increased the dose per my docs advice, and I am finding more relief especially from PFD, which seems to be more stubborn..

I've been able to go 3 days w/o instills!!!! FINALLY! The Lido 4% is about $100 per month and who wants the PITB of instills. I am still using topical Valium at bedtime. Maybe I will be able to let that go next....I hope ....I hope....

[Katrina]

Although I nenver realized there was a gel form I have used Neurontin vaginally and on my urethra at bad times with my doctors permission and with success. A gel form would sure make that easier!! I didn't notice any side effects othan than what would normally come if anything in the gel (since I was putting the Neurontin in Aloe Vera or some other vaginal gel is irritating and your skin or area is dammaged temporary burning ....but that can come from what it is in the gel more than the Neurontin itself. I don't know what is in what you have so I am just prewarning possibilities.

[sleekgirla]

I just apply a decent amount on a qtip and put on my urethra area(almost all my pain has been in my urethra for the past year) and up towards and on my clitoris since this is big pain area for me. and I then put some up inside towards my bladder. dunno if it does anything putting it there but I do anyway. I paid $32 for amonth supply of gabapentin gel 6%. I do not know what the pharmacist compounded it in but is completely odorless and colorless. looks like clear hair gel. At first he made it in a cream, and then I said its for IC, and said oh, wish someone would have told him that because he knew the other ing in the cream would be irritating for the vaginal area. so he made the gel and I have been using it 3 times a day for 4 days without any irritation. As long as I use it 3 times a day it has been helping, quite a bit I feel, but I can't miss a dose or space them more than 8 hours apart. I have gone from taking 6 ultracet a day down to 2 or 3 at most, and even though I am still in some sort of discomfort at all times, it is not longer bad pain. I can walk around walmart for 2 hours and the mall and not wanna crawl into bed and die afterwards now. my bladder does not seem to be nearly as easily exacerbated from walking for long periods so far. I am expecting even better results since I have been on it for four days.
I apply it right after I void, since I want the gel to absorb as much as possible, i get an immediate calming feeling down there. After two weeks I will ask my doctor if I can start using 4 times a day since I know the women on here are on a decent size dosage, and 3 times a day at 6% which is 300mg is only 900mg a day and other ic'ers taking neurontin seem to be on quite a bit more. and also, I have not noticed any bad side effects. I think its worth a try, especially since it is not very expensive and no bad side effects, well hopefully everyone would not have any bad ones!! thankyou all so so so much for replying! I really needed some encouragement and advice.

[dminton]

I tried Neurontin in a hypoallergenic pure base called Versabase, and it burned like heck. I wish I could use it down there but I can't.