Hi,

My RO gave me a script for pilocarpine to help with future dry mouth. Supposedly, the way it works is it makes massive amounts of saliva and sweat. It keeps the saliva glands working and producing hard and hopefully they continue to make some amount of saliva through rad txs. He also told me to drink at least 64oz of water a day in order to stay hydrated and to keep me swallowing...I was doing a solid 48 a day. If this thing goes on any longer I'll need a full time staff!

Have any of you used and had luck or no luck with pilocarpine? I searched the site, but it didn't come up.

Thank you,

Raymond

Hi Ray

Do a search for saligen. That's the brand name for the generic pilocarpine.

You'll find a lot of info.

I just stopped taking saligen. Seems my saliva glands are starting to come back into focus a bit. No where near pre-treatment, but a whole lot better than it was. Now I just use my Biotene mouthwash if I get a bit dry, especially at night.

Ray,

Yep you better start assembling that full time staff now!! LOL

Ray,
I took Salagen during treatment and for about 2 years after. I have a fair amount of saliva so I am fairly confidient it helped. The sweating can be annoying but tolerable. Mine would occur about 30 minutes after I took the dose and last about 5 minutes. If it gets too bad, cut back on the number of times you take it. It's been since 1997, but I think I took 5mg tablets 3 -4 times a day. Give it a try. Beats having a bone dry mouth.

Take care,
Eileen

Ray,

I have been taking it since 1 month post treatment and now I am at 13 months post treatment. It seems like I only get dry mouth when I sleep with my mouth open. I started running/jogging back in February at 6 months post treatment, and have been 5 days a week since then. I am not experiencing any dry mouth when I run. I can't say if it is the medicine working, mouth healing, or a combination of both. It just has gotten better. I have not experienced any side effects of overly sweating. I also drink at least 5 bottles of water a day. It is a habit now.

I think pilocarpine is the generic form of salegan.

TomK,
It sounds to me like you are doing pretty well. The physical activity, running, is definatly going to benefit you all around.
At night when we sleep salivary flow goes down in everyone. People who have had OC treatment experience the same drop in salivary gland flow but we have to remember that most of these individuals have impaired salivary glands to begin with. That is why dentists suggest fluoride treatments at bedtime and on occasion overnight wear of fluoride trays. The main reason for this is to allow the fluoride to protect the teeth when saliva flow is at its least.
Wearing fluoride trays when you sleep will also mechanically stimulate salivary flow even in impaired saliva glands. When something is in your mouth whether you chew it or not the brain sends signals to the saliva glands to produce more saliva because it wants to aid in digesting it. People who wear bite guards, snoring appliances, orthodontic appliances and fluoride trays to bed will tell you they tend to drool when they sleep.
I'm not sure what the solution is for you but you may want to try fluoride trays, or having a bottle of water at your bedside.
I hope this is somewhat useful to you.
Cheers,
Mike

ray my hubby has been on pilocarpine for about 5 year snow has had luck with it good luck to you

I tried it for only a few days. It worked but it made me sweat terribly at night which I couldnt stand. Ya know, girls dont sweat either. Ive been one of the more fortunate ones here with saliva. Since my cancer was located in 2 spots on my left, my right side was pretty much spared as much as possible. I do not need to carry a water bottle around. I do have sufficent saliva, my mouth only gets dry when Im doing a bunch of yard work. Thats the only time I ever notice a difference in my saliva from pre-OC days.

From what others have posted about the meds, it does seem to benefit alot of people.

You do need to have a staff just to keep all the doctors appointments straight. I used to schedule soemtimes 4 appointments per day and then wondered why I was tired. Which doc which day and where, and oh yeah why do I need to see this one? Then there is taking meds, hydration, feedings, skin care, sleeping, avoiding the sun, pharmacy. Its like a never ending regime of care. It will slow down very soon, you only have a few more rad to go.

My RO and MO were real big on Salagen (Pilocarpine) so I dutifully tried to take them the 4 times a day prescribed. However, it really triggered nausea and vomiting so I went down to 3 then 2 a day during treatment. I was able to quit the anti-nausea pills then. Once TX was done, I went back up to 3 and finally hit 4 until about 5 months out when they said no real benefit to continue. In my case, it did seem to work, as at one year out, my dry mouth gets better every day and the prothodontist even had to use the suction during my most recent crown preparation - when in the past I had been bone dry.
Still use biotene spray and mouthwash during the day.