The Questionable Value of Salagen / Pilocarpine

I've been trying to reach some sort of conclusion about the value of taking Salagen (aka pilocarpine) to offset the dry mouth syndrome. Well, at least I am starting to question the value for my particular situation.

Pilocarpine (or the commercial name Salagen) is touted as being one solution to dry mouth. It is supposed to actually stimulate saliva production. Now, given that I'm down to one saliva gland because of the radiation treatment, I thought that it might be something worth trying. I was initially disappointed with my doctors because they didn't suggest it right off the bat. I'm beginning to understand...

Salagen is supposed to be taken 3 to 4 times per day. Each pill costs approximately $1.25 Canadian. So based on a 30 day supply, and three times a day, you can expect to be spending $112.50 per month. Is it really worth it?

The saliva output has not increased enough after two months of taking the pills steadily to make eating a 'normal' experience again. I still need copious amounts of liquid to get through a meal. There is, however, enough saliva on a regular basis that I wouldn't be overly concerned about the dental implications of dry mouth. But there are side effects.

In theory one is to take the pill an hour and a half before eating. Okay, well that helps with taking it regularly, I suppose. You will feel a bit sweaty within forty minutes of taking the pill; and its not a hard sweat, its one of those odd 'nervous' sweats that makes you feel generally uncomfortable. Mine tends to localize on my back... chilling. My nose absolutely drips! Very disconcerting to be constantly dabbing at your nose while eating... I can just imagine the discomfort this causes those I dine with. The warning with the drug is also that you will begin to urinate buckets for a brief time; true. And, to further add to the general discomfort, your stool will get loose.

The use of the drug changes the tastes of some things. I haven't quite figured out the correlation, yet, but there is a decidedly alkaline taste associated with dark chocolate, scotch, and Swiss Chalet's 'special sauce'. It seems like the 'bitter' receptors in my taste buds are enhanced...

Also in my case, the use of the drug makes me feel that I suffer from 'cotton mouth'; my tongue feels swollen; this contributes to the shift in taste. The drug enhances the 'burning tongue' feel. G. tells me that she can't hear any difference in my speech, but it does feel odd to me, and makes me self conscious when I speak for too long. I really think I sound terrible in Spanish, murdering the oral part of the lessons G. and I are taking. This does give me some concern... I'm about to begin presenting a specialized training program at work. I can't have my tongue failing me, nor can I restrict how I present because I'm afraid that my tongue will fail.

Here is a listing of known side effects taken from www.medicinenet.com:

SIDE EFFECTS: Excessive sweating (diaphoresis) is a frequent side effect of pilocarpine. Other side effects include chills, dizziness, excessive tearing, flushing, voice change, stuffy nose, tremor, increased need to urinate, visual disturbances, diarrhea, difficulty swallowing, abdominal pain, nausea, vomiting, and slow heart rate.

I hadn't even realized that some of the swallowing issues I've been having lately could be attributed to the pilocarpine.

So I took a couple of days off from the Salagen, and then started back, making a conscious attempt to note the effects, good and bad.

I am not convinced that using the Salagen/pilocarpine is worth the money for my situation. Masking the flavours of food, and the concern about my tongue are starting to outweigh the benefits. Other than the swallowing issue, I can live with the other side effects.

I think I know why the doctors were not quick to prescribe it for me.

...and then there's today.

Its November in Edmonton... but you'd never know it. Today is predicted to be +7 degrees C. We have no snow. It was bright and sunny for a couple of hours earlier, but a pleasant cloud cover is settling in... and yes, cloud cover can be pleasant... thin, bright, and thick in places to give it some texture, and darker bits, letting sunshine slip through the gaps... pleasant. The quality of light is so much better than it was a week or so ago. I gotta start carrying a camera with me so I can post timely photos...

The experiment with salagen/pilocarpine is progressing nicely. I think that I'm starting to feel some of the side effects which means that it is building up in my system and we should know soon if it's doing me any good. Side effects? I get a light layer of perspiration on my back within an hour of taking a pill; my nose drips; my bladder sudden fills up. Just minor physical 'discomforts', but I can cope with this if it means more saliva. And I have observed that I am using less of the artificial saliva.

This afternoon I have an appointment with my GP (Dr. Naiker) to discuss the results of the CT scan we did a couple of weeks ago. I've got a whole list of stuff to ask him about which includes the nose drip, the nose tip (there's something new there that shouldn't be), thighs, knees and hip pain, and bring him up to date on the pilocarpine.

I did check the 'visitor' log earlier this morning and discovered that someone from Michaels visited twice (I got the ip address, not their business card). I haven't heard a word from them, but I'm pleased to know that they appear to be following up on my complaint. Now it is totally possible that what hit the blog was an automated search engine... I know that some smart IT guys out there do that for their employers; they run an deep dive Internet search against their corporate names to pull up any new references. Its not unlike a 'clipping service' where you can pay an organization to scan newspapers, magazines and then all the online sources for articles about you or your product, and basically build you a scrapbook of the results. I believe that it was an internal Michaels' search because most of the commercial clipping services use their own names, or no names, in an attempt to offer their clients some level of anonymity.

I am absolutely fascinated by the number of people out there who have no channel to reach their spouse/significant other during the day to do the mundane things, like plan their lives as a couple. I am trying to set up an evening at the Oilers hockey game, in the company box. I have invited members of the client team that we are currently working with... and it is astounding how few of them are able to get a yes/no commitment during the working day. What's even more astounding is discovering how many of them actually don't know how to reach the spouse except if its an emergency... very odd, from my perspective. I almost always know how and when I can reach G. for that sort of consultation...

And no, I'm not actually going to the game... we've got tickets for a play at The Citadel.

I'm about two weeks into using Salagen/pilocarpine in an attempt to stimulate saliva production. I can't tell yet whether or not its actually working. The doctor did warn me that I might not reap the benefits for up to two months... and then I may not find any real benefit at all. I do know that I am much more aware of my saliva production. I think that I am noticing a very slight difference, but then again, it could simply be the awareness that enhances the perception... I may be stimulating production just by being focused on it. Unfortunately, the level of production is still not enough to eat without constant sipping of liquid. And worse still, the sipping of wine while eating just compounds the problem! Water and milk... boring!

I finally gave in and phoned the doctor for an appointment to discuss last week's CT Scan... there can't be anything too terribly wrong or he would have been on it immediately after getting the radiologist's report...

Monday

And just for the record, I did ride my motorcycle to work this morning... I dressed well for the cool +4 degrees with a fleece jacket under my insulated leather jacket and a decent scarf. The chaps make a huge difference cutting the wind, and so far I've not needed anything extra on my legs. The real challenge is proving to be the gloves. I changed out to a pair of winter leather gloves which have served me quite well for the past couple of years, but my fingertips got a bit tingly on the ride in this morning. Hmmmm... I may have to go to the motorcycle shop to see if they've got something a bit better for this application.

I figure that I'm good until Thanksgiving, if I can sort out the gloves.

I finally got wound up enough again to call my surgeon's office to protest about the hearing doctor's refusal to call me in to speak to me. Diane, assistant to Dr. Williams, listened politely, assured me that she understood my position, but warned me that I still probably wouldn't get an appointment... its got a lot to do with the nature of delivering specialty medical services in Canada these days. But she did dutifully call them, and a) explain my position, and b) ask for the recommendation for hearing aids to be written out as a prescription. Unfortunately, it was a 'no' on both counts... with the specialist's office assuring Diane that they use the place that did the testing a lot, and are quite comfortable with them, often using them to help with clinics, and are pretty sure that the pricing is fair.

I also asked Diane to speak to Dr. Williams about something called 'salagen', which is also known as pilocarpine. Apparently its used to stimulate the production of saliva in persons suffering from one or two of the incarnations of 'dry mouth syndrome'. I'll just have to wait to hear what the good doctor has to say about it...

I only felt the need for hearing assist once this week. I'm going to keep track for a month, and then decide what to do...

I'm still not gaining weight. I'm definitely going to have to 'up' the volume of calorie supplements as well as keep eating the amount that I have been. It was suggested on the weekend that, where I would normally have a glass of milk, I should substitute an Ensure (or a Boost). Not a bad strategy, but... well, just 'but'. As part of the conversation that resulted in this little cheat, it was pointed out that there are research pointers out there that say that, eating disorders like anorexia or bulimia notwithstanding, putting on weight can be as challenging as trying to lose weight. Hell, I don't remember having trouble gaining that fifty pounds I lost to the chemo, so why can't I gain it back? Probably 'cause I originally gained it over a period of twenty years... and given my history when I was very much younger, maybe we should at least give it a year to put fifteen pounds back on before anybody panics.

My shoulder is loosening up nicely; I'm wondering if Tai Chi wouldn't be another avenue to investigate? I used to do some... its probably time I went back to it.

I'm sure that everyone is getting tired of the propaganda surrounding the election, but let me just say, one more time: Anybody But Harper. Are you disciplined enough to look into strategic voting? Now having said that, I was told that the gentleman running for the Liberals in my riding spoke to the Rotary Club the other morning, and was absolutely dreadful... ill-prepared, somewhat ill-informed, bordering on incoherent and generally a bit of an embarrassment. To be fair, the person who brought this performance to my attention is almost as critical as I am, working with maybe a few more shades of grey in their pallette than I tend to, but not many more. Next election, maybe I'll run! I couldn't possibly do any worse than the current nominee is going to...