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Sjogrens Topics => Living With Sjogren's => Topic started by: man-with-sjogrens on July 07, 2009, 03:01:49 PM

Title: Evoxac or salagen?
Post by: man-with-sjogrens on July 07, 2009, 03:01:49 PM
Hi --

I've been on salagen (pilocarpine) and (despite some nausea) find it quite helpful.

For those who have been on both, how does it compare to Evoxac?

I have insurance and can get Evoxac (which i gather isn't generic) for $50 a month (versus $10 for generic pilocarpine).

Is it significantly better?  Three times a day dosing seems nice....

Title: Re: Evoxac or salagen?
Post by: Scottietottie on July 07, 2009, 03:58:52 PM
Hi man  :)

from what I've read in here Salagen suits some and Evoxac suits others and some people seem to have a few months on one and then a few months on the other. I haven't actually tried either, so can't comment from experience. It seems to be an individual decision though.

Take care - Scottie  :)
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 07, 2009, 04:43:54 PM
I tried Salagen first and had trouble with it raising my heart rate which is a possible side effect.  I switched to Evoxac and it has been a life saver for me.  I think both are good and Salagen is cheaper so it just depends on which works best for you.  Why not try both for maybe two months each and compare.  Evoxac seems to last a little longer.  I take it 3 times a day.

Anna
Title: Re: Evoxac or salagen?
Post by: lurkernomore on July 07, 2009, 06:53:22 PM
I also tried Salagen (I was on the generic form) and had to come off it quickly, as I already take Digoxin for SVT. I was waking up with my heart pounding so hard that I could feel the soreness clear through to my back. I thought I could make it without either, now that I am back on Plaquenil. But I am either too impatient or it isn't working quickly enough. My mouth is dry as the desert and my tongue is a cracked, icky mess. (Yeahhh, sexy, I know, sorry if that was TMI.)

I am pretty sure I will ask my rheumy about the other option the next visit I have with him. That is, if I can stand this dryness until September.
Title: Re: Evoxac or salagen?
Post by: lynnmarie219 on July 07, 2009, 07:31:36 PM
Hi!

Ive been on both Salagen and Evoxac....for me the salagen works much better but like Scottie says it is a very individual thing. The Evoxac did nothing for me but the Salagen works very fast and I can take up to 5 a day as needed per my rheumy..so it gives me some freedom to take it when and if I need it!
Title: Re: Evoxac or salagen?
Post by: eyeamdry on July 07, 2009, 09:00:18 PM
I'm not sold on either of these drugs.  I tried generic Salagen.  It works quickly, as in if you take one and go to sleep, you might choke on your excess saliva.  And slobber on your pillow.  If I know I am going to be out in public and speaking with others, I might take one before I leave home.  It does not last long, about an hour.  It's a pain taking them all the time.  They are cheap with my insurance.

I recently asked for an RX for Evozac  and I had to pay almost $100 out of pocket with insurance.  That was enough for me not to like it.  I noticed it made me have hot flashes and night sweats, but I have not taken it as directed and this might go away if I took it for awhile.  I pay so much for my RX's the Evozac is one I can drop and not hurt anything because of the cost.  I have to pay $87 for Lyrica, but that's worth it.  Good luck with which ever one you choose.  Lucy
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 10, 2009, 08:52:10 AM
I was rereading this post and thought Lucy brings something to light.  It depends on how bad you need  the medication.  Lucy needs Lyrica to get through the pain she has to deal with.  I needed Evoxac or Salagen so badly that it far out weighed the side effects.  In the beginning, I sweat so bad on Evoxac that I would literally be soaking wet.  If I had any choice in the matter, I would have stopped med ASAP.  But, when you can't swallow food and an oral surgeon tells you he hadn't seen a mouth ulcer as bad as mine, it is mandatory to get some moisture in your mouth.  

I think it is interesting how differently this disease affects each of us.  

Anna
Title: Re: Evoxac or salagen?
Post by: joschwartz on July 10, 2009, 11:32:07 AM
How long does Salagen take to work?  I'm pretty drug sensitive so my doctor started me out with one pill a day, then 2, and eventually three.   I've been on 2 for about  a week and see no improvement at all, and I think I did experience an episode of rapid heartbeat, but nothing constant or dramatic.  I also think i've been sweating at night more than usual.

I tried EVoxac when I first was diagnosed.  Again, I don't know how long it takes to see an improvement in mouth dryness, but I never saw it.  I definitly got the sweats with this one and soaked the bed at night. 

What does one do if neither of these drugs work/ or produced intolerable side effects? 
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 10, 2009, 11:53:38 AM
I remember when I got the insert from my insurance company on Salagen and it said it could take up to 3 months to get the full benefit.  I felt the same way with Evoxac that it worked better after being on it several months.  I remember thinking the same thing, I wished it worked better.  I think with Salagen you can take up to 4 or 5 a day.  Maybe you just need to increase your dose.  I sure hope you get some relief, it is so painful when your mouth is extremely dry.

Anna
Title: Re: Evoxac or salagen?
Post by: joschwartz on July 10, 2009, 12:06:52 PM
Three months to get the *full* benefit?  I don't think I'll have a tongue by then and I'm waking up every hour to wet my mouth with something.   I'd be happy seeing ANY benefit.  It's the lack of seeing anything changing that worries me.
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 10, 2009, 12:22:52 PM
At least try increasing your dosage.  I know all about the painful tongue, mine is still cracked but it burned constantly, at first.  Two Salagen or Evoxac were not enough for me.  That is the dose I started on and it didn't make enough difference. 

Anna
Title: Re: Evoxac or salagen?
Post by: joschwartz on July 10, 2009, 01:16:32 PM
Anna,

How long was it before you saw ANY change in mouth dryness?

jo
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 10, 2009, 02:43:25 PM
At first, it only provideed enough moisture to swallow food.  I think after about 3 months, I noticed more comfort.  And then, about a year after that, my mouth dryness improved to a greater comfort level.  I have to believe that my Sjogrens improved some at that point.  I don't think it was the Evoxac at that point.  So, there is hope to improve.  In the beginning my dryness was so bad, I had no idea how I could live another 20 years.  I still hate it, but I manage much better now.  I sure wish they would come out with other things to improve our dryness. 

This is off the subject, but I wonder if someday they will be able to regenerate the saliva glands.  I saw where they were working on creating organs from your own stem cells.  We can't give up hoping that things will get better.

Anna
Title: Re: Evoxac or salagen?
Post by: lcm on July 11, 2009, 12:23:29 PM
I'm on Salogen and haven't been on the Evoxac, but the salogen seems to help. Originally it was prescribed three times a day but that made my parotid glands hurt more so I take two a day and still ache some but it's a trade off. I wasn't sure it was helping much but my dentist noticed that I wasn't as dry and his instruments didn't stick to my dry mouth last time. I almost decided to stop them until he said I looked better, so sometimes things improve slowly enough that it's hard to notice the difference.
Title: Re: Evoxac or salagen?
Post by: man-with-sjogrens on July 17, 2009, 10:01:09 PM
thanks everyone....i'll report back on the difference (if any) when i try evoxac.

i agree that it is worth trying both because that dry mouth is intolerable.
Title: Re: Evoxac or salagen?
Post by: joschwartz 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. 
Title: Re: Evoxac or salagen?
Post by: Spring 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.
Title: Re: Evoxac or salagen?
Post by: joschwartz 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.
Title: Re: Evoxac or salagen?
Post by: man-with-sjogrens 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.
Title: Re: Evoxac or salagen?
Post by: joschwartz 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.





Title: Re: Evoxac or salagen?
Post by: ohiolady 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
Title: Re: Evoxac or salagen?
Post by: Epson 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.
Title: Re: Evoxac or salagen?
Post by: ohiolady 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

Title: Re: Evoxac or salagen?
Post by: man-with-sjogrens 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.
Title: Re: Evoxac or salagen?
Post by: joschwartz 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
Title: Re: Evoxac or salagen?
Post by: Jack 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. 
Title: Re: Evoxac or salagen?
Post by: joschwartz 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
Title: Re: Evoxac or salagen?
Post by: Jack 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
Title: Re: Evoxac or salagen?
Post by: joschwartz 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)
Title: Re: Evoxac or salagen?
Post by: jaygee 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
Title: Re: Evoxac or salagen?
Post by: barc on July 30, 2009, 03:46:43 PM
I have a ? about Evoxac that I hope some one here can help with. Is this a drug that is taken only when needed or is it something I'd need to be on forever. Kathy
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 30, 2009, 04:48:10 PM
Kathy,

I've been taking 3 a day for two years.  I can't imagine ever going without.  I have a friend with Sjogrens and she has been on it for years.

But, some people do take on an as needed basis.  It just depends on how bad your dryness is.

Anna
Title: Re: Evoxac or salagen?
Post by: barc on July 30, 2009, 04:51:22 PM
Thanks Anna. I wasn't sure if the drug is more for symptoms as they appear or all around maintenance to keep moisture.  I've only had a week on it and see a slight change but from what I'm reading it could take awhile. Thanks again..Kathy
Title: Re: Evoxac or salagen?
Post by: ohiolady on July 31, 2009, 06:37:41 AM
It took several months for me to reach full potential of the drug and believe me I needed it.  Good luck to you and I hope you are more comfortable with the additional saliva.  Will help you to keep your teeth.

Anna
Title: Re: Evoxac or salagen?
Post by: Gail on August 12, 2009, 08:40:30 AM
I got a  :oprescription for Salagen yesterday , but I have a terrible fatigue due recieving a vaccination. I still want to relieve my dry mouth. I wonder, if Salagen can make me feel worse. I already had my heart racing yesterday. I had a pulse of 126. Did anybody take this drug in times of illness. How did it make you feel?
Title: Re: Evoxac or salagen?
Post by: Wreck_Tangle on September 16, 2013, 10:40:30 PM
I know it's been a while since someone posted in here, but thank you all for the insight on comparing the two medications.
I don't have insurance and it's nice to see a price on the Evoxac.
I need something for this dry mouth and Biotene is not cutting it b/c it's too minty. I can't have any thing mint at all b/c it burns so bad. Anything lately is burning my tongue really bad.
so thanks again for the comparison.
Title: Re: Evoxac or salagen?
Post by: wisconsin41 on September 23, 2013, 09:26:24 AM
Wreck_Tangle   Evoxac is generic now so it is much cheaper than 4 years ago.