Author Topic: 3rd Rheumy Visit - Any stories on Pilocarpine?  (Read 4533 times)

CAT1962

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3rd Rheumy Visit - Any stories on Pilocarpine?
« on: March 11, 2011, 02:53:02 PM »
Well, I had my third visit. It was okay. I liked him better this time.  ;) I told him my mouth and eyes were more dry, and my joints were killing me most every hour of the day. Fatigue, etc. I didn't have to say Plaquenil. He wrote me a script for it. He also gave me one for VIMOVO (Aleve plus Nexium). Anyone try this for pain? He said to take it as needed. Aleve, I know irritates my stomach. (I used to take Cataflam, which I think is off the market.....omg, the burning tummy was awful!) He said the Nexium in it helps. I do take Dexilant daily, too.

He also RX'd Pilocarpine for dryness. He said I could take one every 8 hours, and if that wasn't enough I could do more. I may just take it at night because I have the typical, "I'm choking, my throat is so dry!" during the night. He said that was a common complaint.

Anyone here take that before? I had an EXCESSIVE amount of saliva when pregnant (10 yr ago was my last birth), and that was an awful, nasty feeling..spit spit...I don't care for a dry mouth, but excess saliva made me so nauseated. Just curious, as I will probably only take it at night. He also told me that I didn't need the lip biopsy, because he is convinced that I do have Sjogren's due to high positive blood work and symptoms. SO, no clinical trials with my DNA!

I did forget to ask him about my HORRIBLE brain fog, and my burning feet. Oh, well..one med at a time.  :-\

He ended the appt with, "I'm sorry...there's no cure yet for Sjogren's..." He seemed truly sorry...lol...oh, well...One Day at a Time, Sweet, Jesus!  :)
« Last Edit: March 11, 2011, 03:17:29 PM by CAT1962 »

ohiolady

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #1 on: March 11, 2011, 03:55:58 PM »
Cat,

I'm curious to know if your doctor knows you are on Dexilant?  I, also, take this med for reflux and it is in the same family of meds as Nexium.  It seems highly unusual he would prescribe Nexium on top of Dexilant.  The Dexilant should cover you with irritation Aleve causes to your stomach.

Regarding Pilocarpine.  I have taken it, but prefer Evoxac.  If your mouth is dry, you will welcome the moisture it brings.  I took 4 a day of the Pilocarpine before switching to Evoxac.  These meds cause sweating as a side effect that tends to lessen over time. 

I hope your new meds will bring some welcome relief.  What a nice thing your doctor said about being sorry.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Carolina

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #2 on: March 11, 2011, 03:58:30 PM »
Cat, I've been on Pilocarpine for about 4 years.

Plenty of saliva, but lots of sweating.

So I'm switching back to Evoxac which is a bit more expensive but doesn't have such a high percentage of people with sweating as a side effect.

I have plenty of saliva during the day.

But at night, I get dry, and drink water.

And now I have a cold and am breathing through my mouth and it's like the Sahara, wakes me up.

horrible.

This too shall pass.

Keep us posted

Hugs

Elaine
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CAT1962

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #3 on: March 11, 2011, 06:17:04 PM »
Oh, yes..he DID mention the sweating. Yikes. may not be so good when one has recess duty several times a week!  :o

I wonder if the sweating will be such a  problem if I only use 1 tablet at night?

Elaine, I have the same issue...daily saliva is okay, but night time is not.

ohiolady

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #4 on: March 11, 2011, 06:20:05 PM »
Cat,

If you take a tablet at night, you will just sweat for awhile after the pill. 

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

CAT1962

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #5 on: March 11, 2011, 06:33:06 PM »
Yummy. Night sweats! *sarcasm*...at least I am used to that... :-\


Smudge

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #6 on: March 11, 2011, 07:50:11 PM »
I take Pilocarpine, 5x/day.  I also have recess duty twice a day, five days a week, plus  work in classrooms and drive school bus.  I haven't had any trouble with excess sweating.  I don't think I've perspired at all, for that matter.  I'm curious to see how things work out when the weather warms up this summer.  When I get too warm I feel twinges like I WOULD perspire, but there is no moisture produced.

I do have a very dry mouth overnight, but shortly after my 6am dose, the saliva starts up again.  My rheumy said I could cut the tablets in half and take them twice as often to keep a more even level going, but it's hard enough taking it as often as I do, so I stick to the five times.  He said to experiment and take them however I chose as long as I got the five doses in over 24 hours. 

It really does help immensely.  I hadn't realized just how dry my mouth was until I took that first pill.  What a difference!

CAT1962

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #7 on: March 12, 2011, 11:21:07 AM »
Thank you, Smudge. I am going to give it a try. It's spring break...time for experimentation! ;)

valene2009

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #8 on: March 12, 2011, 12:16:12 PM »
I never tried Salagan but have been on Evoxac for years and love it!!!  no side effects.. really..once in awhile i get a little warm after taking it for about 10minutes but I don't sweat from it and it works great...

CAT1962

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #9 on: March 13, 2011, 02:03:18 PM »
Well, I was reading last night (AFTER the purchase..sheesh) that you shouldn't take this med if you have asthma, or have had an asthma. Attack. I do have asthma. Has anyone had this med AND asthma?? Now I am mad and out 10 bucks..lol

TanyaFromTexas

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #10 on: March 16, 2011, 05:18:33 PM »
I was on that first. It did not work good, it made me so so so sick, didnt see any more moisture, and the night sweats are awful.

So he swiched me to evoax , its more $ but i like it SO MUCH BETTER. It helps with my mouth, not sick to my tummy at all, i still have night sweats but not as bad. Goodluck

annette2

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #11 on: March 16, 2011, 07:24:18 PM »
I've been taking pilocarpine for years.  You do build up a tolerance.

I would rather sweat than choke and lose my voice.  It's the last drug I would give up if I had to drop everything for a bit.  Of course it's easy to say that with my  RA pretty controlled.

It is possible to bite the tablets in half for an easier trial

Annette
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Bonnie

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #12 on: March 17, 2011, 03:44:52 AM »
I would not be without this drug, it is amazing for me.  I no longer have a sore bleeding tongue.  I have also found that it has helped with bowel problems.  The sweats were a bit hard to deal with in the beginning and I wished that I had taken a few days off work.  But now I don't have this problem.

c991

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Re: 3rd Rheumy Visit - Any stories on Pilocarpine?
« Reply #13 on: March 19, 2011, 11:04:04 PM »
I've been on it for 1 1/2 years 3-4Xs a day, it helps a lot. I didn't even know it could cause sweating, it takes alot for me to sweat.. Now that I think of it I don't seem to itch much anymore, wonder if that's due to more moisture in my skin.