Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Oh no, I hope they figure it out Jenn. Neuropathy sucks Hope you feel better! I had a ton of injections, I believe 8 total and 2 epidurals. No luck for me either, but I'm going to check out Botox. I'm wondering how that would work on neuropathy? >, > >How I wish my sympathetic nerve blocks helped my neuropathy. I heard about >them from someone on the list and talked to my physiatrist about them and he >agreed that the blocks would be great to try. He does a " test " injection >with a small amount to see if it actually helps before doing the full >injection. Fortunately for me, he did the test injection and not the full >one first b/c it did make my symptoms worse (not a lot, but did get worse) >and unfortunately for me, it didn't give me the relief I was praying for. >For now, I'm stuck with meds. We were trying to find some answer that would >help me come off the meds. And none of the neuropathy meds work. The only >one that kind of helped was Cymbalta - and that is just too expensive. > >Unfortunately, I've started experiencing new symptoms - increased neuropathy >and spasticity - couple that with the increased bladder pressures and >hydronephrosis I developed over the summer, and I'm very frightened that I >have developed another symptomatic retether or my syrinx is back (I had >similar symptoms with the first syrinx, except that I had very rapid neuro >decline - but I wouldn't notice that now since the last surgery paralyzed >me). His office is going to call me with my MRI appointment in the next few >days, so I should be able to have my MRI next week and have the results in >2-3 days after that. *nervous* > >I wish there was an injection that could rid me of my neuropathy. > >Jenn > >On Tue, Mar 22, 2011 at 11:30 PM, hollygolightly1916 >wrote: > >> I have to say though, the only thing that's truly helped quell my >> neuropathy were sympathetic nerve blocks - one to either side of my spine -- >> but each procedure was done separately -- about 8 weeks apart. I started >> with pain medication treatment first and then worked up to the injections. >> >> >> Good luck! -- >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Yes, yes, neuropathy does indeed suck. If I could get rid of it, I would be one HAPPY camper. I can't even count all the injections I've had or even name all the different types. The 3 that I remember were the epidural cortisone; facet joint injections and the sympathetic nerve block (test). I can't imagine that Botox would do anything for neuropathy. It works more on the muscles - not the nerves. But, I've never had Botox. Jenn On Wed, Mar 23, 2011 at 1:08 AM, Dybowski wrote: > > > Oh no, I hope they figure it out Jenn. Neuropathy sucks > Hope you feel better! > I had a ton of injections, I believe 8 total and 2 epidurals. No luck for > me either, but I'm going to check out Botox. > I'm wondering how that would work on neuropathy? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 I'm going in for a consult this Saturday, mostly for hip and buttocks, but I will ask what, if anything it would do for neuropathy. Why is Cymbalta so expensive? I remember being on it and paying 30? Has something changed? >Yes, yes, neuropathy does indeed suck. If I could get rid of it, I would be >one HAPPY camper. I can't even count all the injections I've had or even >name all the different types. The 3 that I remember were the epidural >cortisone; facet joint injections and the sympathetic nerve block (test). > >I can't imagine that Botox would do anything for neuropathy. It works more >on the muscles - not the nerves. But, I've never had Botox. > >Jenn > >On Wed, Mar 23, 2011 at 1:08 AM, Dybowski wrote: > >> >> >> Oh no, I hope they figure it out Jenn. Neuropathy sucks >> Hope you feel better! >> I had a ton of injections, I believe 8 total and 2 epidurals. No luck for >> me either, but I'm going to check out Botox. >> I'm wondering how that would work on neuropathy? >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 , I will be interested in hearing the response about the Botox. If it does, sign me up! I have no tone in my legs anymore anyway - LOL You must have had some good insurance to get it for $30. There isn't a generic for it yet. Once it goes generic (unless they manage to find loopholes to extend their patent forever like Topamax and Singulair), I'll start taking it again. I just checked and Eli Lily has the exclusive patent on Cymbalta until 6/2013 - and that is at the earliest. All they pretty much have to do is find that it treats another condition that was not listed in the original patent and BINGO - patent extension. I do have Medicare Part D, but Cymbalta is so expensive that it would put me in the coverage gap by June (maybe earlier) and then I would be stuck paying 100% of my Rxs for the rest of the year. I have been fortunate that my urologist is helping me out with samples of the Gelnique. He found out I had developed hydronephrosis at the end of last year. Obviously, the generic oxybutinyn wasn't keeping my bladder pressures low enough, so it was back to brand Ditropan XL or something else. I started on Ditropan XL and it worked great. Then it went generic and the insurance stopped covering the brand. But- the generic didn't work worth a POS. Reason? The actual medicine/active ingredient as a time released Rx was off patent, but the actual time release mechanism used in Ditropan XL was still protected. So, the generic uses a different mechanism for its time release. But, it is not as reliable or consistent. I found I got good relief from the plain generic (oxybutinyn) - but since I developed the hydronephrosis, it is clear it wasn't keeping the pressures in my bladder low enough. There was a time even before Ditropan XL went generic that most insurance companies would cover every other brand Rx in this class except for Ditropan XL, so I have tried all those - and they either had side effects I couldn't handle or - for the most part - didn't control my symptoms. So... welcome to the wonderful world of hydronephrosis and needing something to get my bladder pressures down. Enter Gelnique. It is time released oxybutinyn (like Ditropan XL) but in the form of a gel that you rub on your skin once a day. It is supposed to decrease the side effects associated with oxybutinyn (constipation, dry mouth, dry eyes, etc) since it is not processed in the GI tract. The only problem is that it costs $155 for a 30 day supply. I even checked and a 30 day supply of equivalent Ditropan XL (brand) is $145. Since the savings aren't that great, I'll take the Gelnique and hopefully decrease the dryness. But, the Gelnique alone will send me into the donut hole when combined with my other Rx (even though they are generic). I just can't afford it. My last visit, I told him that I just couldn't do this and what my other options were. The RN came in and said that they always get a TON of Gelnique samples and to ask about them anytime I run low and if they have them they will give them to me. I am so thankful. She sent me home with about 2 months worth of it and a card to get a free 30 day supply at the pharmacy. The point is that Medicare part D sux. Granted, its better than nothing, but it still stinks like a big steaming pile of u know what. Jenn On Wed, Mar 23, 2011 at 1:26 AM, Dybowski wrote: > > > I'm going in for a consult this Saturday, mostly for hip and buttocks, but > I will ask what, if anything it would do for neuropathy. Why is Cymbalta so > expensive? I remember being on it and paying 30? Has something changed? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 JBobin said the following on 3/22/2011 11:19 PM: > I can't imagine that Botox would do anything for neuropathy. It works more > on the muscles - not the nerves. But, I've never had Botox. > > IMHO, you are correct. Rick Quote Link to comment Share on other sites More sharing options...
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