Author Topic: Pilocarpine- Does it really work?  (Read 2008 times)

momomom

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Pilocarpine- Does it really work?
« on: May 24, 2010, 05:30:19 PM »
Haven't been on here for months.  i have been waiting for this prescription for months. I have asthma, had to get some stupid breathing test so I could get the scrip. SOOOO is this Pilocarpine good stuff? Will it make my eyes, joints, skin, etc. produce moisture? I am really hopeful but skeptical. Nothing has helped so far.  Its been since very early spring since my diagnosis. Plaquenil sucks, pred. sucks, restasis sucks. Nothing does much of anything. Will this be the med that actually helps? Ok here I go I am now going to take my first pill.....hope this works (swallows pill).

Carolina

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Re: Pilocarpine- Does it really work?
« Reply #1 on: May 24, 2010, 06:24:35 PM »
Dear Momomom,

I've been on Pilocarpine for about a year or more. 

I started on Salagen about 8 years ago, then switched to Evoxac somewhere along the way.

I switched to Pilocarpine cause it is slightly cheaper and I end up in the donut hole in Medicare so it matters.

It works fine for me.  Mostly for saliva, in fact it is almost over producing saliva in the mornings, if anything, when I take two.

I take two at night.  I still take a bit of water when I wake up, and spray my eyes and pee cause I have Interstitial Cystitis.  But I don't get horribly dry.

I also make sure my nose is clear, cause if I have to BREATHE through my mouth, nothing helps enough.

Keep us posted.

Kisses

Carolina
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momomom

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Re: Pilocarpine- Does it really work?
« Reply #2 on: May 25, 2010, 08:57:49 AM »
Took my second pill this morning. I was driving home after dropping my daughter off at school when I got this weird feeling in my mouth and then I started drooling like mad. I actually inhaled saliva accidentally and choked for a minute. I thought to myself " what the heck is going on?" . It took me a few minutes of this continuing before I remembered the medicine. Then I wondered "can it really work this fast?" Well now it has been 2 hours. The drooling is still going strong. I have never produced saliva like this in my entire life. I didn't know a human could produce this much saliva. It's weird but I'll take it over the dry mouth. Well I hope it does more than make me drool. My mouth being dry was the least uncomfortable of my symptoms. I really hope it makes my eyes do this! Or my skin. It would be nice to sweat when I get hot too (usually I just overheat). I've heard it could help with these things.

Carolina

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Re: Pilocarpine- Does it really work?
« Reply #3 on: May 25, 2010, 02:26:03 PM »
WOW,  I do take two in the mornings most of the time, and then I'm sort of swallowing tons of saliva all morning, a bit like you do before you vomit!

And If I try to take a nap in the morning I just drool all over the pillow.   So some mornings I do just take one pill.  And one at night, rather than two in the morning.

All of the meds have worked quite well for me.   My eyes are still rather dry, especially at night.  But I know that when you shut your eyes you get a deficit of oxygen and even normal people wake up with sticky eyes.    I use Restasis and a pure water spray at night.

The water spray is called Nature's Tears and really refreshes my eyes.

I'm afraid my Restasis got tooo hot in storage and has been ruined, since it is gluey rather than watery now.

Sigh
and it is sooooooo expensive.,

Oh well.

I'm glad the pilocarpine is working for you.

Keep us posted.

kisses

Carolina
Female-72-CVID-pSJS-IC-Periph.Neuro.-CAD-Osteoarthritis-Auto.Neuro-SFN-Anemia-Copper Def-Raynaud's Blepharitis,Meniere's/Deafness-Hiatal Hernia-IVIG-Gamunex-Medrol-Neurontin,Atenolol-Pilocarpine-Copper-Cymbalta-Nasonex-Lipitor-Estrogel-B-12-Iron-A Lipoic-D-Mannose-NAC-Co-Q10-Turmeric-Aleve-D3-Omega3

Cheryl

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Re: Pilocarpine- Does it really work?
« Reply #4 on: May 25, 2010, 04:37:17 PM »
Momomom,
  Don't give up on the Restasis, if you have some.   You mentioned that you have asthma;  my asthma medication (symbicort) interfered with Restasis and kept it from working for me.   I was able to taper off the symbicort and use just my rescue inhaler.   Then after a couple of months, the Restasis started working.  (It may be one of your other medications that is causing your eyes to be drier.)   
  Well, as you now know, the pilocarpine does work for saliva!  Yes, drooling can be exciting!  In my experience, it has not helped other Sjogrens symptoms. 
  I hope to see you around regularly. 
Best wishes
Cheryl

ksdiogi

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Re: Pilocarpine- Does it really work?
« Reply #5 on: May 27, 2010, 03:08:58 PM »
I didn't have much luck with the Pilocarpine but the Evoxac is working wonderful.  I went for a year with extreme dry mouth - NO relief.  Dentist told me to try Sensodyne, dermatologist said I was allergic to everything but they couldn't pinpoint anything.  Ear, nose, and throat guy said I had horrible sinus issues, blah blah blah (and that was for many years).... Went to a new allergist - diagnosed immediately with an autoimmune disease.  Sent to a rheumatologist who identified Sjogren's before even getting the blood work back.  The Evoxac is more expensive but is worth it to me to be able to eat bread or potato chips again!

I am so glad I found this site.  I was diagnosed 11 months ago just before my 41st birthday.  Had lots of other issues last year resulting in lots of steroids and feeling pretty awesome during that time.  Once the steroids wore off, I started feeling bad but we tried different things that I thought was working.  Now it seems maybe I was in a flare up state then and it receeded.  Well, I'm back in flare up mode but happy to find this site.  In fact, I sent the link to my husband and asked him to read through some of the posts.  I think it's hard for him to understand that I can be feeling great one day and the next, totally exhausted.

Sorry to post so much off the subject but I did want to share my success with Evoxac!  :-)

lynnmarie219

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Re: Pilocarpine- Does it really work?
« Reply #6 on: May 29, 2010, 12:52:59 PM »
I like salagen (pilocarpine).It's cheap, it works fast and it works well....but it doesn't last all day (that's why we can take throughout the day as needed) and I find it pretty much only helps with my saliva. But I stick with  it, because that's one of my issues!

Keep us posted momomom!


ksdiogi.

Welcome to Sjogrens World! Thanks for sharing your success story with Evoxac with us here...I tried Evoxac and it didn't work at all for me and was much more expensive. Good thing there is more than one choice of medication out there for the same thing....we all react differently to each and have our preferences!
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cwrightm

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30mg of Pilocarpine seems like just not enough of a dose
« Reply #7 on: August 24, 2012, 07:02:54 PM »
Has anyone taken more than 30mg(6 tablets) of Salogen(Pilocarpine) a day with any more saliva production? I have been taking 30mg since April and it works sometimes. Other times during the day esp.when I exercise indoors or take a walk outside it doesn't work. Has anyone taken 40mg or more with success? Thank you for your response.