How's does Pilocarpine and salivary glands work.

[GgcJap]

Hi all,
     I was wondering if anyone could explain to me how our saliva glands work. (I've researched and don't really understand). Why is it that our salivary glands work after taking pilocarpine  but don't when we don't. Surely if they work after taking it they aren't completely destroyed. I know pilocarpine works by activating nerves, so the nerves must be ok right? So what is exactly the problem?
Pilocarpine doesn't have the same effect for me as it used to, does that mean I have nerve damage?

Sorry if it's a stupid question but I just don't understand.

GgcJap

[SunshineDaydream]

Came up with this by searching "how does pilocarpine resolve dry mouth."  http://www.medicinenet.com/pilocarpine/article.htm

Have you checked to see if you are receiving the same brand of Pilocarpine that previously worked? If you're getting name brand Pilocarpine and it stopped working, have you tried the generic or vice versa? Have you tried Evoxac instead as has been previously suggested?

A while back another board member and I realized our generic Evoxac wasn't working. Then we realized the non-working one was from a different generic manufacturer than the one that had previously worked. I asked my pharmacist to always give me the generic that had been working and haven't had a problem since.

Bottom line, if one med stops working, try another. I hope you find something that helps.

[cccourt1942]

Gjc, I just posted a query and saw this.  DO NOT TAKE ALL THIS INFO AS ADEQUATE.  I don't have time to go back and look this stuff up.  So, best I recall..and explain:

Well..first the salivary glands work autonomically...wait..that isn't right..parasympathetic nervous system...still autonomic...as needed.  You have six major and maybe 6 to 800 behind your lower lip.  They provide saliva to your oral cavity. 

SjS is a condition where your white cells turn against your mucous especially as produced from your salivary glands and lacrimal glands.  (others involved too)  When the saliva is attacked in those salivary glands, your saliva is compromised, becomes thick and cannot go thru the ducts, or thick "sludge" moves thru and is insufficient provide enough mucous necessary to lubricate your oral cavity, your esophagus, etc. It's one of the reasons we complain about the thick glob in our throats. I use mucinex btw to cut that stuff.

Pilocarpine is a (and I am probably spelling this wrong) muscarinic (something) agonist.  ( I think..i remember associating it with muscadine jelly/wine  ) .  Anyway it is to stimulate saliva we have left/and excess in the case they are not atrophied as you mention.  The medication itself is natural..it's plant based from S. America..I think Brazil.  DO NOT take this verbatim nor the spellings/explanations.  This is a brief description as I understand it. 

The medication (as you stated it stopped working for you) is likely not enough.  I now take 22.5 mg per day.  I have taken up to 25 mg per day.  I take it early a.m., about 2:00pm, and then about 8.  Just saying I don't go a long time in between doses but for night. 

btw: I call pilocarpine "artificial saliva" because I know it begins shortly after dosing, and my oral region is comfortable until time for the next one.  I have laughed thinking this stuff must not have any afterlife. 

I hope this will get you started and your assignment is to google this, and correct all I 've said from spelling to explanation. Let's see..you are in Austrailia...you are just getting up ....on the Sydney side or Perth? 

Have a good day!  I 'm getting ready for bed.
c3

[GgcJap]

Hi SunshineDaydream and thx for the link, it was useful.

I have been recieving the same pilocarpine(salagen original) granuals and tablets since my problem started. I did ask my Dr for Evoxac last time I saw him and he said ok but when I went to pick it up I was given Salagen tablets again? I will speak to him again when I see him in a few days. I also havent tried the non generic of salagen yet either.

I hope I find something that works too.

Hi Cccourt
     
Thank you for taking the time to explain things, its much appreciated.

I have read a little about the parasympathetic nervous system and will go and read more after this. Also I think I need to read more on how Sjogrens effects the saliva glands.

I had the thickness when it first started but dont get it so much anymore, infact I dont get saliva much anymore.
I never had swollen glands(that I could see) Im guessing if our saliva is too thick to pass our glands would swell. Which leads me to think maybe my Dr is right in assuming I have igG4 RD and not Sjogrens.(I know its a very fine line and very hard to tell, or so my Dr says)

I just tried taking 10mg at once(double) instead of 5mg and did get more saliva but also had heavy sweating from everywhere on my body. At least I know some glands are still working.
    I now take it 2 or 3 times a day(due to the little effect it has) usually before eating, but have taken it up 7 times a day when it first started to stop working.

I will google all of this for better understanding, but to be honest I wouldn't be able to correct your spelling as Im not sure myself there are any errors.

I am from Perth, Australia but I actually live in Japan, which makes this journey all the more difficult. Firstly I have the language barrier but the main thing is is that Sjogrens doesn't seem to be treated the same way over here as it is in Australia, USA and UK. They cant subscribe me Plaquenil for Sjogrens over here and I've had to import it myself. My Dr told me not to take it as its still new over here, used for other diseases like SLE, infact I would go as far to they're a little scared of using it. I will decide once and for all after my next appointment with him as to whether I will take it or not.

Thx for the help.

GgcJap

[cccourt1942]

I had the thickness when it first started but dont get it so much anymore, infact I dont get saliva much anymore.
I never had swollen glands(that I could see) Im guessing if our saliva is too thick to pass our glands would swell. Which leads me to think maybe my Dr is right in assuming I have igG4 RD and not Sjogrens.(I know its a very fine line and very hard to tell, or so my Dr says)
***You won't believe this but when I signed on I started thinking about what time it was down under...and then I recalled you were in Japan!  I'm old.  Best excuse ever!
      I want you to know, as you have read from many on this board, I had to have had this disease for years-decades.  My eyes were noted being dry by my ophthal about 30 years ago. I know I haven't shed tears in over 20 years..and may be as long as 25...but a LONG time, none the less.  So...it reached my eyes first.  Due to my profession, I ALWAYS drank copious amounts of water.  Now, did I really talk my mouth dry performing speech therapy or was my mouth drying over those years.  As it was when I finally noticed it...there was NEVER any comparison to being thirsty and having a sandpaper mouth.  So who knows?  But think it was one of my final symptoms.  Others that occurred over about 20 years include: costochondritis (misdiagnosed a myriad of conditions..pain was same all along), sialadenitis (correctly diagnosed five years before SjS dx and 4 years before the sandpaper mouth, joint pain about 8 years before dx--I bought a pilates reformer!, burning mouth/tongue-about 1 year before dx, loss of smell & taste over 10 years prior to dx, GERD dxed at least 10 years before...when it was absence of mucous in my esophagus---and I kept telling them food never went down..i didn't have "heartburn"...it was in my THROAT...ignored (I don't take the purple pill anymore), tinnitus which people here taught me can be associated to SjS...never been dxed/linked though, itching--maddening, cottage cheese mouth...oral fungus for about a year prior ---& more..those the worst---& my point is the culmination of all the concomitant conditions can vary.  You may be right about igG4--I haven't a clue...but should it be SjS, I am hear to tell you it "grows."  THEN...it sort of explodes.***

I just tried taking 10mg at once(double) instead of 5mg and did get more saliva but also had heavy sweating from everywhere on my body. At least I know some glands are still working.
++ but have taken it up 7 times a day when it first started to stop working.++  *** OMG.  I bet you did sweat heavily.  I looked back at your signature..and read "stomach"...the pilocarpine tore my stomach up in the beginning.  I took a LARGE starting amount...and died for about 3 or 4 days...went back to side effects--learned to take it in small doses.  In fact, I used Xylimelts in between doses while building up to enough---and it was painful to return to dry mouth after those few days of excessive pilo.  I worked with the med instead of changing.  Really, at the time it's likely I didn't know the others.  I hadn't joined this forum..i know.  And before I finish this: the excessive sweating topic: My head sweats, hair gets drenched...but I mostly feel clammy/gummy from the excess --I guess ==sweating everywhere else.  ***

They cant subscribe me Plaquenil for Sjogrens over here and I've had to import it myself. My Dr told me not to take it as its still new over here, ****** used for other diseases like SLE, infact I would go as far to they're a little scared of using it.

***This makes no sense.  It's a plant.  It's on the list of most essential 100 drugs worldwide.  AND...it's used for SjS and damage to any salivary glands during radiation associated with head and/or neck radiation for cancer.  Many times the damage during radiation is temporary.  At times they can be fried.  Xerostomia feels the same in our mouths!

Now..for the reveal:  I was almost 72 years old before I was dxed.  I figure I had it from the time I was in my mid 40s.  My rheumy said "we'll never know".  He did say when the Sialadenitis dxed and treated by an ENT I could mark that as beginning.  Just because he didn't dx SjS doesn't say I didn't have it.  So.  You just aren't to that stage or...as you stated: its' something else.
ccc

[GgcJap]

Hi cccourt,
     I lol ed when I read your first response about Australia/Japan. Only because I still do the same thing to this very day. Brain fogs as amusing as it is frustrating.
     Thats a lot of symptoms you have and Im sorry to hear. You sound like your dealing with them ok though? As the new ones came did any ever go away or get better?
     Im not sure about igG4, my symptoms seem to overlap both diseases.

     Yeah I did sweat prefusley, although only for about 15~30mins. I needed a face towel and to change my clothes after.
I wasnt aware it could have an effect on your stomach. That might be why my constipation has gotten better since I cut back?

I cant get Xylimelts here but so badly want to try them.

It really doesnt make any sense to me too, which is why I went out and imported it from overseas. We are talking about Plaquenil right? I think you might mean Pilocarpine?

I like that way of thinking, just because the doctor says its not doesnt mean it isnt.

GgcJap

[Pete0211]

Re: Xylimelts. I tried these when my mouth was really dry for the first couple of weeks, and they did nothing to help out (actually, they heavily coated my mouth and made me feel worse). I did try them again later, at night when I'd have some dryness, but nothing like the daily, desert dryness from those first few week and they did help enough that as soon as they'd wear down, I'd wake up, stick another to my teeth, and go back to sleep for several hours.

If you'd like, contact me via private message and I'll see if I can send a pack of them to you, if you'd like to try them out. I buy them from Amazon here, and I think they come 48 to a box.

Personally, the gels (GC Dry Mouth Gel - a japanese brand, Oral 7 gel, and Orajel Dry mouth gel) work better than the xylimelts.

[GgcJap]

Thx Pete,
     I'll see if I can source them first before I go putting you out. I believe they are quite expensive? So you had real dryness for 2 weeks and now only at night? 
I can't get oral 7 or biotene over here but I do have a friend sending me some over, maybe he can get xylimelts too? I'll check it out and then msg you if he can't.

Thx Pete

GgcJap

[Pete0211]

l still deal with dryness during the day, and as the time has worn on my eyes and hands have become more of a problem, too (though it might be the onset of the winter weather, but I do keep my house well humidified). I still may have a really dry throat/mouth day, but they are nothing like the first two weeks where I couldn't eat, couldn't sleep, and barely do anything but drink water. Pilocarpine was effective, even though short lived, and now I'm on Cevimeline for the past two weeks, which seem to last longer and isn't as drastic as the pilocarpine (I'd get very heavy salivation for a couple of hours after each pill, now with the Cevimeline my mouth feels more "normal" with levels of moisture, and that lasts pretty close to the next dosing time).

You wouldn't put me out - I spent serious amounts of money trying everything i could for those first couple of months. I can only imagine how tough it is for you - just let me know and I'll gladly send you a care package of stuff.

[GgcJap]

Thx Pete,

Your kindness and understanding is really appreciated.
I am the same, my mouth is not like the complete dryness I experienced initially but there isnt a day when it isnt noticed. In fact even now the salivas minimal and the Salagen doesnt seem to be working like it used to. I also am going to ask my Dr about Cevimeline. It seems to be preferred for some people.

I go back to the Drs tommorow so I`ll see how it goes.

Thx again,

GgcJap

[quietdynamics]

I had the Salivary Gland Scintigraphy test (Nuclear imaging) to determine the scope of damage to glands.
Upon the result doctor increased pilocarpine to 7.5 x 5/day.. however, I could not tolerate that dose.
So am to take 5mg x 5/day.
I take the last dose at bedtime so my mouth is not dry for sleep.
Now with the heat on for our winter I add humidity, esp to the bedroom (I simply use a crock pot next to head of bed and leave it going all day.. just add water as needed. I can feel the difference in nasal passage, etc.)  Every so often when I brush my teeth I use the brush to give inside of cheeks, lips a massage and do tongue everyday. Only takes a minute.

Pilocarpine: the mean elimination half-life was 0.76 hours for the 5 mg dose... so taking a handful at once is not really going to help.. best to spread out through the day. Sip water, chewing sugarfree gum with Xylitol promotes saliva as well.

*Looked on Xylimelt site.. seems they are looking for a distributor in Japan.. want to start a business.. 

[GgcJap]

Hi QD,
     I just got the results of my Scintigraphy and was told that there is no damage to the glands but the secretion is slow. I have been prescribed evoxac and will see how that goes. My doctor wouldn't prescribe any more than 3 a day. I always take a salagen before bed to help me sleep. I have a humidifier in my bedroom which I can't set but usually ends up around 80% I wonder if that is too high? My A/C only goes up to 60% so that's the most I get when I'm in the living/dinning.
     I might try the lips/cheeks massage, it sounds interesting.
Taking two at once did nothing but make me sweat a lot.
     I'm not looking to start a business but I do really want to try Xylimelts when they get here.

GgcJap

[Pete0211]

Hey Ggcjap,

I used to take 4 pilocarpine / day (even one in the middle of sleep when I'd wake up with dryness each night), and now the three cevimeline/Evoxac (~7am, 3pm, and just before bed - usually ~10pm) is working great.

I did notice that for about 10 days between the two the cevimeline didn't work as well, but now that it's building up in my system I'm glad I changed prescriptions.

[GgcJap]

Hey Pete,
I just got my evoxac today, I've only had one but will take one before I sleep, did you not use both whilst transferring from one to the other? Do you recommend not taking both whilst transferring?
It's funny but a lot of people recommend evoxac. I'll let you know how it goes.
I also started plaquenil today, I'll let you know how that goes too.

GgcJap

[Pete0211]

I didn't use both during the transition. They are the same class of drug, so doubling up on the same class of drugs is usually contraindicated (in my understanding, at least).

Hope it helps better than pilocarpine!