My dry mouth is not too bad. The rad Dr. did a good job and left me with some salivary glands still operational. It's not perfect, I'm still mucousie and have dry, sore throat and mouth and the old H2O bottle is my newest best friend, but I was looking at the Salagen drug description test result report which comes with the sample and it lists lots of side effects such as diahrea (sp), vomiting, intestinal pain, etc, etc, and, to be honest, I have had just about enough pain things at this point that I can put up with a little dry mouth to avoid a 10 to 15% chance of getting these side effects from a drug that apparently doesn't cure the problem, just makes it less irritating.

Does anyone have any experience with Salagen? It comes in either 7.5 mg or 3.5 mg and is either blue in color or pink. At this point I'd rather skip it if bad things are even remotely possible.

Kirk,

I took Salagen, 5 mg white tablet, 3 times a day pretty much from September to a couple of months ago. The only side effect I noticed was an intense sweating about an hour after taking it. I seemed to only sweat when it was cooler temperatures outside. I switched over to Evoxac to see if it helps but to be honest, I am not sure either one really helped the saliva.

I have had stomach "restlessness" all my life. If anything has a side effect of diahrea (sp) it is pretty much a sure thing for me. I did not experience this Salagen. During treatment, every other thing they gave me with a caution it could cause that side effect proved very true.

Ed

Kirk and Ed,

I've been taking Salagen (usually 5mg, 3x daily) for about 13 years. I was in the clinical trials for it starting around 12-18 months after I finished cancer treatment. My salivary function was pretty diminished after radiation and I needed something to boost the saliva for speaking, eating, singing, etc.

In my case, it's obviously been helpful enough for me to keep using it all this time. Even now, if I miss a dose, I notice it before long. Early on, I experimented with the 7.5mg dose and that made me sweat too much. The 5mg dose generally works well enough for me without producing much in unwanted side effects. I've found that it seems to be better if I take it on a somewhat full stomach -- for some reason, taking it on an empty stomach makes it rush into my system faster and sweat more, and then the beneficial effects also seem to wear off faster.

Kirk, I haven't had the intestinal effects you listed. Sometimes, in addition to a little sweating, my nose gets a bit runny or my eyes can water somewhat -- all in all, a trade-off I can live with.

Since it is primarily a glaucoma medication, it can affect your eyes (although I haven't noticed anything in that regard). I have regular checkups with my ophthalmologist every two years because of this.

Hope this helps.

Cathy

I was put on Salagen 3 or 4 times a day when I started radiation to help preserve the saliva glands. I took it for two or 3 years. The only side effect I had was prespiring for about a half hour about an hour after I took the medicine. Then one very hot and humid day at the shore with no A/C, I started prespiring so badly I couldn't see because the sweat was running down my face into my eyes. Since I rarely prespire much when it is hot and humid, this was extremely unusual. I stopped the medicine and the problem stopped. I never went back on it because I don't think I needed it anymore. Don't know what dosage I was on, will have to look at the bottle. I cetainly didn't experience any of those dire side effects you listed, but then everyone's body is different. Give it a try and see if it helps.

Eileen

Kirk-
I was taking 6 tablets of salagen at about your phase of treatment and only had sweating as a side effect. Now at 21 months past treatment I'm down to only one tablet at bedtime. Sure gets me through the night! And no more sweats. I use Biotene gum and gel during the day to get through business meetings and places where it is inconvenient to carry a water bottle. This combination is working so far for me. - Kris

I used Salagen all through my IMRT treatments, and my oncologist was very pleased with my "wet" mouth... finally about a month after my treatments ended, the repeated "sweats" finally got to me and I stopped taking them. Of course, now my mouth is pretty dry, especially when I sleep or am outside in the hot Arizona sun... I might have to try taking them again, maybe once right before bedtime like Kris above....

Isn't salivary function supposed to return to somewhat normal levels when you do salivary-gland sparing IMRT? I've heard it can take as long as 18 months for them to get cranked back up again, however... just curious...