Pilocarpine /very dry mouth

[Nomad]

For a good ten years with my sjs, I only had very mild dry mouth. Then I had a few weeks of lots of watery saliva that made no sense. Now, I have extreme/uncomfortable dry mouth. So bad...I'm having trouble concentrating.

 At times sores and always uncomfortable. At times it seems like NO saliva at all. Occasional weird bursts of watery stuff.

My gp put me on pilocarpine and the directions say take 3-4 a day as needed. I started four days ago with half tabs. Now, a little more. No help. I recall reading it's best to work your way up. My gp is actually unfamiliar with this med.

These are 5 mg tabs. For those with very bad dry mouth, what dosage do you take? How often do you take it per day? Has it helped?

As a side note that I think is unrelated...I'm showing signs of dehydration too with a high rbc and unusually dark yellow urine. If I drink 70 ounces of water daily, the urine color improves a lot prompting my doctor to be unconcerned.

Thank you. 

[Duchess]

Hi! Several years ago, I was started with 30 mg. right off the bat, 3 times a day. It took a few weeks for me to see any results. Then after several years of taking Pilocarpine, it became ineffective. I stopped taking it for awhile. Now I have resumed, but not with the same results. My saliva never was like it was before Sjogrens.

Duchess

[meirish]

The first thing I would advise is to increase your intake of fluids. Water, juice, decaf tea and coffee in moderation. You can't put out saliva even with normal health with dehydration. It is a daily endeavor to drink 2 quarts a day and after a while your body will feel more healthy and normal. Not drinking enough will ruin your kidneys if it continues a long time.

You need fluids to help keep your brain, kidneys, stomach, intestines and all organs working and healthy. Constant dehydration will even affect your eyes. Most people are not aware of the significance of dehydration. Continued dehydration can also result in some people having blood clots which are always hazardous to ones health. Dehydration also contributes to constipation in most people.

Now, with the Pilocarpine one has to be patient when starting it. If you did the 5 mgm 1/2 tab to start... I myself would do this for 5 to 7 days to allow the body to adjust to it. You then may want to increase to the 5 mgm 3 to 4 times a day as your doc prescribes. If this gives you some issues that affect you try going back to 1/2 tab 2 times a day and 5 mgm (1 tab) 2 times a day.

When I first started on it I had to be a little finicky in how I took it as I would get so hot and get the sweats at times. We have to just baby ourselves along as every one of us reacts differently to this medication. Many people are able to go up to the 10 mgm a certain number of times a day. I would not force yourself to make any big changes with out talking with your doctor. Sometimes just talking to the doctors nurse and telling her what you are experiencing and asking if doc would have any suggestions or if he would need to see you.

Many times they will do the suggestions and see how you do. Always call the nurse back and keep her updated. This helps maintain a good and trusting relationship between you and your doctor. If this isn't working it is wise to see and Ear, Nose and Throat doctor about these Sjogrens issues. The ENT's are generally the doctors that deal with these issues and know a whole lot about it.

Now, I have been able to shop taking the pilocarpine as I am not as dry as I used to be. Our mouths can vary from time to time for some reason. Try drinking hot lemonade made with real lemons and some sweetener. This helps to make your saliva glands sort of pucker up a little and sometimes one can train them to be a little better at making moisture. Also, placing warm cloths on your cheeks and under your chin for 10 minutes or so and then gently massaging these areas will help move saliva along in the ducts. I would lay on a warm hot water bottle a lot when I first had problems... long before I got diagnosed. Seemed like it was a safe and old fashioned thing to do and it helped some.

Also, I don't know if you have ever been on Plaquinel or Hydroxychloroquin, but this drug helps inflammation and pain in many people and some people have some help with their saliva, dry eyes, etc. It is worth a try as inflammation is the cause of the dryness. Do a search on this website and you will find a whole lot of info on this drug. How people get along on it, etc. You will see that it can cause some eye issues but that is very rare as this drug is given in much lower dosages than it was years ago.

There is another drug for the oral dryness and I have forgotten the name. Someone should come along and maybe talk about it some. Good luck. meirish

[Nomad]

Thank you so much!

Im drinking 64 ounces of water a day. Some days a little more. 3-6 ounces of coffee a day. One glass of iced tea. Lots of fruit.my urine color is greatly improved. Whew.

Im also eating healthier than ever. No sugar, no junk, no flour, little to no dairy, no cheese, no alcohol etc.

The Pilcarpine schedule now:
1/2 tab when I wake up
1 tab before lunch
1 tab before dinner
1 tab at bedtime

Im doing better.

I do have some issues with chapped lips now.

What is the name of that other med for oral dryness? 

[Linda196]

The other drug is Cevimeline, the trade name is Evoxac

[meirish]

Glad that you are doing better. It might be that the chapped lips are for something you are drinking or eating that is different.Have you gotten a new mouth wash or tooth paste. I have had some oral hygiene products that have dried out and chapped my lips. let us know if you figure that one out. It is interesting that you are taking something to increase your saliva and your lips get chapped. Now you will have to spend money on products that help your chapped lips. Sjogrens just makes us spend money on so many unexpected products. Good luck. meirish

[jazzlover]

The other drug is Cevimeline, the trade name is Evoxac

Is this very effective? Side effects?

[Spring]

I took Salagen (Pilocarpine) over 20 years ago. IT worked immediately for me. But it went like this: I was dry dry, then took pill, it took an hour to work at which point I was talking and accidentally spitting as I spoke, so it then  wore off in an hour or so, at which point I had to wait an hour or two for the next dose. So it was up and down, very annoying.
Then Evoxac was invented and I got to try that, MUCH better, more smoothly and longer lasting between doses, however, I am only allowed 3 per day, so I space them out 7 hrs apart instead of 6. If I go a couple hours past that I sure get dry and then get behind the ball so to speak. Might be the next day before I catch up. Glad it is now generic (cevimiline), but still quite expensive. Retired now, I have to check yearly and change my drug plan to find one that covers it as generic. This is the first year that all 4 plans I compared actually covered it. The previous 6 years, it was only 1 plan i could find to cover it. I do not remember specific side effects. But it is try as Meirish says, you must drink water. IF you don't, you get dry. Count on it.

It helps my dry joints and eyes as well.

It does seem you are now drinking plenty.

Spring

[Carolina]

Hi, I take 6 pilocarpine a day....total of 30 mg.   My mouth is sort of ok during the day.  Night time is the problem.  I've been at this for 20 years.

I take Mucinex (generic) to make sure my nose isn't blocked.  If I breathe through my mouth at night my mouth is a horror show in the morning, so I must breathe through my nose.

I use Xylimelts at night some times.  I buy them by the bottle and they are much cheaper that way.

I drink fluids to keep hydrated...but that only does so much.   Water actually makes my mouth feel dryer....weird.

I wish there was a good answer, but I do all I can.

Good luck, Nomad.

[meirish]

I drink carbonated water...the lime flavor. This has no sugar and I frequently mix it with water and ice. This is about the only thing that will help my dryness and quench my thirst. A cup of decaf coffee makes life better but can't drink much of that. I sometimes chew ice....this is really easy for me to do as I crave ice with my chronic anemia. We just have to use our heads all the time to keep comfortable.

Unfortunately, the drinks that help my thirst the most are the carbonated sugary pop and that is a no-no with diabetes and the diet pop is kept to a bare minimum due to kidney disease. Life.....how sweet it is. Just have to keep on keeping on don't we. meirish

[Kelley170]

Hi,
I take pilocarpine 3x/day, 5 mg. It definitely helps but I also get dry in between doses. My dr said that I can take it 4x/day which I do when I remember . Also, I had tried 7.5 mg tabs but that was too strong (I woke up choking when I took that dose).

I hope you get it figured out!
Kelley