Author Topic: Evoxac or salagen?  (Read 18155 times)

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #15 on: July 18, 2009, 12:42:55 PM »
Salagen hasn't done a thing to me so far (3 weeks).  If anything my mouth is drier.  It also seems to be very much effected by eating, but I can't tell if there is any particular food that's doing it.    The big problem is the dry mouth is waking me up every hour at night, so I'm no longer sleeping enough or decently.    Since I already tried Evoxac with no positive results and terrible sweating, what am I to do?     I'm spraying stuff and sucking stuff and using all the usual dry mouth products but they only give a few minutes of relief.  Coating my mouth with liquid vitamin E helps a little but tastes horrible. I also worry if exposure to that much E is safe.

Getting really depressed about this.  I've had Sjogrens for 2 years but this level of dryness only came on about 6 weeks ago, coincidentally around the same time I got IBS like symptoms and a possible compression fracture in my back.  Don't know if they are related but thought I'd mention it.    If I could choose any condition of all of mine to be free of, it would be Sjogrens. 

Spring

  • Administrator
  • Sr. Member
  • *****
  • Posts: 379
Re: Evoxac or salagen?
« Reply #16 on: July 18, 2009, 02:07:47 PM »
Both of these drugs depend on that you still have some usefullness in your glands. They won't do anything if your glands are dried up.

I have been on both - started on the Salagen and was on it a about a year or less when the Evoxac came out.
With salagen, it took 30 minutes to work, and yes, you can end up spitting accidentally on people at about the 45 min mark (for me) it gave me so much saliva. Then for me it worked well about an hour or 2. Then it gradually decreases effectiveness and I was then over dry and could not take another dose for an hour - so it was lots of ups and downs.

Then I got the Evoxac, and it is a much more affective, smoother ride so to speak (for me). Lasts 3-4 hours in good shape, with the climb up and climb down. I take it every 6-7 hours. You need to have your liver checked now and then. I like the length of good saliva. It also helps my joints (I feel like the tin woodman getting the oil lube) and my eyes.

I had no insurance for awhile and went back to salagen and could not stand it (sore joints, dry eyes and mouth every couple hours) so just paid the full price for Evoxac. That is what works for me and I would not do without it. Did not take any number of weeks to find out, either.

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #17 on: July 18, 2009, 02:31:25 PM »
What do they do with you if your salivary glands have dried up?  I don't think I'm at that stage, but I certainly have gotten terribly worse in the last 6 weeks. Before then, dry mouth was the least of my problems.  I get a symptom that the docs say is not related to sjogrens and I've never seen it mentioned anywhere.   I get terribly thickened phlegm (I assume it is saliva) which I have to spit out all day.  It first was justafter eating sugary foods and gradually becamse associate with all foods, some worse than others, and then not even just after eating.  Fatty foods seem to be the worse, but sugar is right behind. But it can happy if I just brush my teeth!   Sometimes the reaction is almost immediate, like if I eat a rich brownie.  Other times, it will be much delayed so that I can't tell what food it was... sometimes pasta seems to do it... but it will take an hour or for the cycle to stop.      Although it is disgusting, at this point I'd rather be spitting then be as dry as I am.  Spitting at least didn't wake me very often at night and it wasn't constant.

If Salagen is supposed to work in 30 minutes, it sure isn't doing that for me. But neither did Evoxac.

man-with-sjogrens

  • Guest
Re: Evoxac or salagen?
« Reply #18 on: July 22, 2009, 05:10:23 PM »
Spring, that is an excellent description of your reaction to both drugs.

I'm hoping Evoxac will be as positive for me as for you -- certainly your salagen (pilocarpine) response sounds very familiar.

fingers crossed and will report back.

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #19 on: July 22, 2009, 06:55:34 PM »
My rheumatologist's nurse returned my call about Salagen not working after 3 weeks and said that I had to be on 3 a day for at least a month to get the most benefits out of it and some people had to be on 4.  Ihad only recently gotten up to three, and then was so discouraged from seeing absolutely no change, I just stopped all of it for a few days.   The nurse clearly didn't know much and was just parroting back something the doctor has said, but the implication was clear that I should not expect a gradual improvement as I increased the dose or after a week or two... almost like it was all or nothing.  This seems to contradict what the rest of you are saying, if I'm understanding you correctly.   For those who had any positive response from Salagen, even if you later went to Evoxac, how much were you on and how long had you taken it before you noticed anything positive?  I'm taking 3 a day just to keep the doctor happy (you know how popular we noncompliant patients are), but the only thing that is happening is hot flashes.  The nurse said that wasn't a side effect, but sweating was.  Like, yeah, I'm also sweating like crazy.   I hate these word battles.

And this is in Dr Vivino's clinic, by the way.  I have never actually seen him, only other clinic doctors. The woman I have now is much better than the first one, but I do wish I could see him.   the scheduler practically yelled at me that I couldn't expect to just switch doctors around whenever I felt like it.      I really am starting to hate almost everyone connected to the medical field.






ohiolady

  • Hero Member
  • *****
  • Posts: 2201
Re: Evoxac or salagen?
« Reply #20 on: July 23, 2009, 05:58:33 AM »
I can only repeat what my insert from the insurance company said about Salagen and that is it can take up to three months to see the benefit.  I would at least try to take 3 to 4 a day for a few months to see if it helps at all. 

With Evoxac, my dryness improved after several months.  I, honestly, believe my Sjogrens improved and therefore I got better effect.  When I first tried both medicines, I remember thinking, this is it, this is all the moisture I will get from medicine.  But, in my case, it was enough to help swallow food.

Hang in there!!!!

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

Epson

  • Guest
Re: Evoxac or salagen?
« Reply #21 on: July 23, 2009, 01:06:46 PM »
I think saliva glands go on vacation from time to time, last week when I took my Evoxac before going to bed and woke up the next morning saturated in drool, that normally doesn't happen.  I also have times where I lose my voice for three or four days due to dryness.  When you stop taking Evoxac for three or four days, you really can tell the difference.

ohiolady

  • Hero Member
  • *****
  • Posts: 2201
Re: Evoxac or salagen?
« Reply #22 on: July 24, 2009, 09:33:49 AM »
Epson,

I have the exact same thing happen to me.  Now, I've wondered if the saliva glands can work better at times, why can't research figure out how to make them work to their optimal level at all times?  Surely researchers know with Sjogrens patients their level of dryness varies, sometimes, from hour to hour.  Am I the only one who has thought of this???? 

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

man-with-sjogrens

  • Guest
Re: Evoxac or salagen?
« Reply #23 on: July 29, 2009, 05:01:47 PM »
Joschwartz -

i hear you on the medical profession.

i' ve got a great rheumy in nyc that i can recommend if you need one.

best.

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #24 on: July 29, 2009, 06:17:57 PM »
Joschwartz -

i hear you on the medical profession.

i' ve got a great rheumy in nyc that i can recommend if you need one.

best.


Unfortunately, I can't travel due to spine problems.  Chronic pain and sjogrens, what a great combination.. NOT.   

jo

Jack

  • Guest
Re: Evoxac or salagen?
« Reply #25 on: July 30, 2009, 12:28:47 AM »
I've tried Salagen for several weeks and at first it worked and I drooled a lot, now it's really ineffective.  Today the doc ordered Evoxac but I found out my ins. won't cover it....$240 is out of the question for me.  My mouth has become so dry that my tongue has ulcerations that have become dysplastic.  Kind of frightening.  The doc looked in my throat today and said that it looked like I had silly putty in there because the mucus was so thick.  Yuck!  I have a burning tongue, dry hoarse throat, and dry cough also.  I guess I'll just keep taking the Salagen for awhile longer hoping maybe it might kick in or something.  I  know how you feel about being through with the medical profession.  I've totally just about had it. 

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #26 on: July 30, 2009, 09:27:27 AM »
Jack(female?),

What exactly do you mean by "at first"  Salagen worked ?  When in those several weeks did you notice any change and how much were you taking?   I've been taking it for about month and see absolutely no change except to my temperature regulator.   I get hot flashes  and sweating on all day/night long and they aren't menopausal; if I stop the Salagen they go away.   

Evoxac was worse for sweating.  It also did nothing for my dry mouth.  My insurance covered part of the cost but it was still in the top tier of the drug price heirarchy.

Tell me more about this mucous.  I rarely hear anyone say they have it. I have constant thick stuff in the back of my throat, so much so that I have to hack it up and spit it out. It gets worse with certain foods, but can also start up independent of eating. My doctor said this isn't a Sjogren's symptom but no one has any idea what it is caused by.   I think it *is* Sjogren's related, but can't find anyone who shares the same problem to compare notes with.     I am literally unfit for being around others because of it and its more of a problem then the dryness since it's turned me into a recluse.   

jo

65 year old female in Philly

Jack

  • Guest
Re: Evoxac or salagen?
« Reply #27 on: July 30, 2009, 09:44:15 AM »
Jo..I'm sorry to hear about your mucus problem.  It sounds much worse than mine.  My dr. looked in my throat and saw that this mucus is like silly putty.  I can't hack it up at all, it just kind of stays there.  It's from the dryness he said.  As for the Salagen, it worked for me for about a week or so and would last about an hr at a time.  Since I can't afford the other stuff I'm going to try to take Salagen and see if it might kick in in the future.  jack  short for jackie

joschwartz

  • Guest
Re: Evoxac or salagen?
« Reply #28 on: July 30, 2009, 09:59:13 AM »
Jackie,

So the very first week you took Salagen, you saw some improvement, right? How much were you taking?   My doctor said, via a phone message from her assistant which may not have been terribly accurate, that I needed to give it at least a month to get "full benefit".  I kept emphasizing that I saw NO benefit but it didn't seem to register.

jo(short for Johanna)

jaygee

  • Guest
Re: Evoxac or salagen?
« Reply #29 on: July 30, 2009, 12:26:34 PM »
Don't know if this will help, but I find if I have dairy too much - cheese, yoghourt, milk, I get terrible mucous, and I am sure I read somewhere that dairy can cause this, if you are prone to it.  Hope something starts to work for you, soon  xx