Author Topic: Pilocarpine  (Read 2455 times)

Annticki

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Pilocarpine
« on: January 14, 2016, 03:02:08 AM »
Recently had pilcarpine added to my regimen which was an experience in itself. I had declined it initially when she explained possible side effects. And I'm the queen of side effects usually. If there is a rare side effect on a drug I will bring it out. This time when it was offered I agreed to try it and can say I've had no side effects yet.

The sudden appearance of saliva in my mouth was almost overwhelming. Felt weird, a good weird and had to try to remember how to handle talking and just resting with this foreign moisture I'd not had for such a long time.

My question is about sudden increase in my sense of smell. My sense of smell was nearly absent. I could smell a little but definitely not like others as they'd comment about good or bad smells I did not experience in the same locations. Now suddenly I smell things. Is it the pilocarpine?  And will it continue to get better?  Or are the few whiffs I'm getting now as good as it will get?

Maria3667

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Re: Pilocarpine
« Reply #1 on: January 14, 2016, 03:29:04 AM »
Hi Annticki,

Welcome to pilocarpine  :)
Yes your increased ability to smell could very well be related to more saliva. Smell buds may also dry out due to Sjogren's. By the way, haven't you noticed how pilocarpine also makes your nose a little runny?  It does for me.
For now, I think this improved sense of smell is as good as it gets.

Personally I get an even better result by supplementing with Zinc lozenges & low dose Dhea and testosterone.

Good luck!
Maria
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

cccourt1942

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Re: Pilocarpine
« Reply #2 on: January 14, 2016, 07:17:43 AM »
Annticki:
     My initial dosage of pilo was so large it tore my stomach up.  I too LOVED the saliva "feel".  so...I read up on side effects and started at a low dose...increasing slowly.  It worked.  Took me a year to work up to 3/4ths of original dosage.  After two years, leveled off at 7/8ths of original dosage.  AND..smell???  It returned like you are describing:  minimally...but mine after about 15 or 16 months.  I guess it had to do with the amount I was taking.  I really related it to low dose prednisone I'd started taking.  The smell/taste return has been experienced by a lot of us.  I don't think we expect it and it's so wonderful when it does!!  ???

Glad you can tolerate this drug.  It makes all the difference in my life.
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Annticki

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Re: Pilocarpine
« Reply #3 on: January 14, 2016, 06:41:33 PM »
Thanks for the info. My rheumy started the pilocarpine by increasing the dose slowly over about 2 weeks till I reached 4 per day. No side effects. She said if I ever stop taking it we stop it by tapering it down the same way. She wants me to find the lowest effective dose for me and I've settled at 3 per day without any adverse effects and other than slightly dryer by morning, it's an improvement and not dry enough to take a 4th pill at bedtime. My nose does run more too. But I'm liking this drug. No more tongue sticking inside my mouth and soon I'm going to try eating peanut butter again. I miss peanut butter but it was impossible to swallow.

Carolina

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Re: Pilocarpine
« Reply #4 on: January 15, 2016, 04:46:19 AM »
I have taken Pilocarpine or Evoxac since I was first diagnosed 2002.

I still have some dryness, and can't imagine life without one or the other.

Regards, Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) Inter.
Cys-PN-CAD-Osteoarth-SFN-Oral Lichen Planus-SIBO-Act.Purpura-Tinitus-Meniere's-Hearing Loss-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om.3-Methotrexate-Esome

susanep

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Re: Pilocarpine
« Reply #5 on: January 15, 2016, 07:40:52 AM »
I take pilocarpine, and it does help me. I don't notice any side effects accept sometimes I have double vision or trouble seeing clearly, but I don't know if it is the pilocarpine or my diabetes. I am thinking more likely the diabetes.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Tharrell

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Re: Pilocarpine
« Reply #6 on: January 15, 2016, 05:26:39 PM »
Oh my! I had just recently asked my doctor on the max dose of cevimeline, because three wasn't enough. She told me three. Maybe pilocarpine is different? She gave me a long list of alternative products with her favorites highlighted to see if those would help in addition to the cevimeline.
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

cccourt1942

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Re: Pilocarpine
« Reply #7 on: January 15, 2016, 05:59:17 PM »
These medicines have different strengths.  Pilo can be dosed at 5mg or 7.5mg.  Evoxac @ 30mg or 15mg.  I don't know if Cevimeline has more than one strength.

c3
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Kathy57

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Re: Pilocarpine
« Reply #8 on: January 15, 2016, 10:09:43 PM »
I believe the maximum dose for Pilocarpine is 5 mg up to four times daily, and the maximum dose for Evoxac is 30 mg up to three times daily.

I started with the Pilo but I only got one hour relief per pill.  It just was torture waiting until I could take the next one.  I switched to generic Evoxac three times daily at 30mg each and got much better and longer lasting results.  I think it also has a kind of cumulative effect cause I felt even better after three weeks of taking it.

I'm still very dry at times but I am so much more comfortable and can enjoy and taste my food again which was something I didn't believe I'd ever get back again.  My mouth has always been much worse than my eyes so I really rely on the Evoxac.  I panic if I forget to take it with me or if I think I might run out.

I'd like to be able to stock pile it but no can do with my insurance.  Wish I didn't need it so much but it is fundamental for me to have it.  This is something that I will gladly take for the rest of my life.  Just hoping I never build up a tolerance or become immune to it.

It would be really nice if someone could just raise a magic wand and just cure us!  Wouldn't that be awesome!!  All our strength and health back.  We could forget about all of this as being a really bad nightmare!  Wouldn't that be nice.  Too bad it will never happen.

Until then.......... We must carry on.

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

annette2

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Re: Pilocarpine
« Reply #9 on: January 16, 2016, 05:22:24 PM »
Agree with you. The first thing I would grab before being rescued in an emergency is my salagen.  We had a generic for Salagen come out in Canada a few years ago and it sucks. I don't think thry could possibly have tested it on older women who are used to taking it regularly. It hits the peak very slowly, and then all the side effects kick in and the effects disappear in no time.

I hope they don't discontinue the brand name - we can't get evoxac here.  I did get some once in the US and I  like the way it works, but could not believe the price!
Annette

RA and Sjogren's Syndrome

Salagen, Plaquenil, Restasis and Enbrel