We went to the PN Support Meeting last night.
 

What a great meeting. I thought there must have been 20 people there. Some new ones too. People come with various stages of neuropathy, various KINDS of neuropathy, (i.e. motor, small fibre, etc). and MANY questions about WHY they got neuropathy.

One interesting case was a woman aged 58. She has motor and small fiber and it's progressing so fast she doesn't understand it and she's looking for answers. I asked her 'do you know why you have this?" She said "well, my mother had it, but they say mine is idiopathic" I said "your mother had the same symptoms?" and she said "yes". I said "and they diagnosed her as idiopathic also?" and she said "Well, yeah". We all then said "well, there is definitely some genetic component going on here, an inherited neuropathy".

What a lively discussion. Lots of good info and great questions.

Glenn was there and as usual, he was his most informative self, answering question after questions and helping everyone.

Me?? I just gave out muffins. lol But I got requests for the next meeting which is on St. Paddy's Day and they want them green. Never made a green muffin but I'll try something.

Also there was this man at the meeting who had Trigeminal Neuralgia as well as PN. Now THAT is a horror story. I told him about Methyl B-12 and he said "oh I take lots of various B vitamins". I said "do you take B-6"? and he said "I think I do"

I then walked over to Glenn, passed him a note saying "Talk to that man about the dangers of too much B-6"

And Glenn did his thing. He knows SO MUCH. Thank goodness he is coming to these meetings. It's nice to pick his brain.

So we all shared what we know about PN and what we hope to know from future meetings.

Oh, we talked about clinical trials going on that are connected to PN. There are 237 clinical trials going on in the USA. Didn't know that.

We talked about how Tramadol helps certain people with burning and pain.

And want to know how good a meeting it was? When the break came midway in the meeting and everyone can stand up and walk around and leave the room for a bathroom break, well, everyone started talking to Glenn and to each other and I laughed.

It's like our brains are absorbing whatever info we have to share about PN.

We also talked about how a chronic pain sufferer deals with friends and family who do not understand PN and how it affects a person's daily interaction with people and whether or not they can participate in activities.

We found out that, it often happens, that a person thought they had a friend but in hard times, that friend turned out to be a fair weather friend.

So I do hope that anyone who lives near the NY area, well, drop in any time at one of our meetings. Next one is March 17th.

Nice group of people.

Just wanted to share .

Melody

Hi Melody,

That's fantastic. I was in a chronic pain support group here for a couple of years. I'll make a few calls and see if there's one for PN as well.

Hi.

Alan and I always look forward to these meetings. Sometimes lots of people come, but if it's bad weather, then sometimes only a handful.

But there is ALWAYS something new to chat about, new opinions, various treatments, etc. We discuss what works for some and doesn't work for others. We discuss side effects.

For example, last night one of the people at the meeting had gone to his dentist and he was prescribed Prescription Toothpaste (which is essentially fluoride in big amounts). Never heard of this. And guy who got the prescription went to the pharmacy and was told "I have no idea how to fill this and his insurance would not pay for it"

So today I walked into my local pharmacy and asked "What is prescription toothpaste?" and he said "oh it hardens the enamel and some people have big issues with that so they are prescribed this toothpaste and it costs about $40 bucks or so.

I said "And it's just fluoride and nothing else?" and he said "that's right?" and I said "But isn't Fluoride dangerous"? and he said "not really".

Now I've been on the internet and I've read where it is very dangerous so who do we believe?

See what we learn at the meetings??

lol

Melody

Yes there are prescription toothpastes....
 

Been using them for about 4-5 years now.
What I use now is Colgate PreviDent 5000 plus a 1.1% sodium flouride formula. For a 51g tube. And costs [depending on dentist between $15-25. per tube] Only needs to be used daily, but sparingly.
It helps some? But also do consider the pain meds you are on that can leach calciums. Common from the anti-seizure meds we often take for pain.
Calcium + Vit D + Magnesium combos are also useful [per Mrs D, and also in my experiences] to help minimize damages. That I why I'm only on intermittent pain control. I like my teeth and my bones! I mite also have an asorbtion issue which the diagnosing neuro had suspected. Seems rite for me. can't speak for others tho.
There are also other major brands with similar 'prescription' pastes. Best source to find some? Your dentist! Good luck! - j

This is the first I've heard of this! Assuming you mean gabapentin (Neurontin) & pregabalin (Lyrica) specifically, I did a quick search and found some mention of it, but nothing from what I'd call a credible source (or at least nothing I could understand. :confused: )

I also saw some kind of admonition about being careful not to take calcium or magnesium supplements within two hours before or after gabapentin or pregabalin. (More:confused:)

Is there some credible citation for this stuff, or is it Liberty Valance stuff? ("When the legend becomes fact, print the legend.")

Thanks,

Doc

We have had some posters come here who claim their teeth broke and fell out on Gabapentin or Lyrica. Some within 6mos!
They have posted also on RSD about this. Some internet websites with patient reporting, have also many posts growing in number specifically on Lyrica. (I researched this a year ago).

Antiseizure drugs commonly are listed as disrupting Vit D and calcium metabolism. Dilantin and Tegretol had this warning many years ago. So all antiseizure drugs are sort of lumped together now about this issue. But with Lyrica some of the people coming here are quite emphathic that they had sound teeth before Lyrica was prescribed!

Search "teeth" on RSD and PN and you'll find the posts.

Edit to add.... The Pfizer company is mum on this topic, like most drugs on active patent, being advertised on TV etc, we won't see the "truth" come out until patent is expired. Drug companies of late, hide things from doctors and patients. The fines they pay are chump change when discovered, and they remain laughing all the way to the bank. So no I could not find medical studies on tooth loss. That doesn't mean however that it is not happening.

I was on gabapentin (almost 7 yrs) and switched to Lyrica. About 1-1/2 yrs after switching I started having periodontal problems (I had had perio problems in the past, about 8-10 years ago).
I lost 6-8 teeth, both uppers & lowers,in a 10-11 month period!
My dentist referred me to a periodontist.
Perio surgery was done after the teeth were lost.
That was over 2 years ago.
I had to get partial plates made, but have not had any other problems since. (I do get a cleaning at the perio office, & the assistant checks my remaining teeth every 3-4 mos.).
I'd be hard pressed to pin the cause of tooth loss on Lyrica, & I still take it 3 x day. But I was interested in the anecdotal experiences that swore tooth loss was due to one of these meds.
After careful search, I was not convinced.

Hello,
I was on max dosage of Lyrica and Tramadol for two years and have had only two fillings redone, my problem was breathing, would wakeup gasping for breath. Switched to Methadone after that, much better. Have been on amitriptyline over two weeks now and sleep very well, also started taking Proscar for prostate and I don't get up at night to void bladder like I use to, In other words I get eight hours of good sleep. Amitriptyline does cause urinary retention and vivid dreams, but its the only med I'm now taking for PN and its working very well, must say Methadone was the best for pain and never had to keep increasing the dosage over a three year period. Best to all.

after 12 months on Lyrica i had a perfect rear molar start to chip and then cracked so only 2/3 of the tooth left. It was the best tooth I had so its a mystery since there was no decay at all. First thing i thought was Lyrica having read the stories. its only one tooth so cant be sure but it always starts with one tooth..

did you guys that have had dental problems taking neurontin or lyrica have dry mouth while you were taking it? lack of saliva will do a job on your teeth as Joan has posted about in the past.

Most of the meds used for PN state on the PIS that dry mouth is a side effect, chewing gum has become a habit since developing PN. While working part time in the medical ward at the county jail it was easy to spot Meth users by their rotten teeth.

I for one? Didn't think I'd dry mouth to begin with?
 

But hard to tell. But ages ago? Thanks to Silverlady and MrsD? I tried the Biotene...and it helped a lot! Simultaneously tho, I was on post cancer meds which also sap the calciums and mayhem ensued. Especially cost wise?
When my dental bills rose to double digits in front of the comma? I asked point blank of the dental techs 'do folks on anti-seizure meds' have more dental problems than others? Multiple tech's answered: Yes! Big time.
That is when I had to choose between having teeth and being able to chew/eat or get the minimal relief I'd been getting from the meds. I chose having teeth?
PS Also changed dentists? mentioned the dry-mouth/biotene connection..they went: Yes it helps a lot? Why DIDN't ANYONE HERE or ANYWHERE ELSE tell me? Now they've Biotene sample intro packs to try... they give me two packs each time I go!
I did to religiously get my teeth cleaned every 4 months, now, it's every three! I'm trying to do the best I can to avoid losing teeth or root canals or worse! I don't know why? But I'm sure clean teeth can't be blamed for all my other problems! The biotene and the Prevident are helping... At least stall what mite be inevitable?
As with PN and other things? Sometimes it's PATCH PATCH PATCH all the way home. Hugs to all - j

No dry mouth with lyrica. now on elavil (cant spell antrypoloinuiredine)
very dry mouth

I have heard that opioids will do that; dry mouth, lack of saliva, and eventual tooth loss.