Author Topic: How effective is Evoxac/Salagen?  (Read 388 times)

Deseree

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How effective is Evoxac/Salagen?
« on: September 27, 2018, 01:28:44 AM »
For those of you taking Evoxac or Salagen, how well do these work for your dry mouth symptoms? Are you still dry 24/7 and it's just not as bad? Or is it like periods of feeling normal followed by periods of dryness? Can you talk easily or is it still a struggle? I know this will depend a bit on individual damage and disease intensity, but I'm looking for some hope and just want to know that there is something that can bring me relief. The longer I go with these dry symptoms, the more convinced I am that the rest of my life will be spent in absolute misery. I have been feeling really depressed lately just thinking about the fact that I may never feel normal again, so I'm really hoping that there is relief, even if it is only hours at a time. Thanks everyone.
30 year old female. Positive ANA and RF. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

Carolina

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Re: How effective is Evoxac/Salagen?
« Reply #1 on: September 27, 2018, 05:29:23 AM »
Dear Deseree,

Of course we are all different, so 'your mileage may vary'. 

Salagen/Evoxac have been a life saver for me.  I have been taking one or the other for over 16 years.

Even with the maximum dosage, I still always carry water, and am sometimes hoarse with dryness.

I can always tell when the medication 'kicks in', and it is marvelous.

For a while I tried taking a double dose before bed, since nighttime is the worst.

BUT I had way too much saliva before I fell asleep and it was unpleasant.  So I cut back to one tablet.

I really should take a tablet in the middle of the night, but I forget.

One thing that irritates me is how expensive both medications are even in their generic form.

It seems unreasonable after all these years that this essential medication should be so costly.

However, essential is the key word.  So I'm lucky to be able to pay for it.

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

SunshineDaydream

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Re: How effective is Evoxac/Salagen?
« Reply #2 on: September 27, 2018, 04:54:15 PM »
The search function reveals several threads on this topic. http://sjogrensworld.org/forums/index.php?action=search2
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Navigator

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Re: How effective is Evoxac/Salagen?
« Reply #3 on: September 27, 2018, 05:09:54 PM »
Evoxac has also made my life much better.   I can not indulge in drying foods...like caffeine and alcohol as much. But the drug has made a big difference in my dryness.  I would recommend it.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

Kararific

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Re: How effective is Evoxac/Salagen?
« Reply #4 on: September 28, 2018, 11:45:31 PM »
 I took it when I was first diagnosed in 2011 and didn?t get any results. I tried it again last year and noticed it helped but the last few months it has helped remarkably. My last visit to the dentist was amazing ? I even had saliva pooling in my mouth! So drastically different from previous visits where the dental instruments or sticking to my mouth.

Carolina

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Re: How effective is Evoxac/Salagen?
« Reply #5 on: September 29, 2018, 09:17:48 AM »
Hi Kararific,

Welcome!  Glad to see your posts.

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

SjoGirl

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Re: How effective is Evoxac/Salagen?
« Reply #6 on: October 04, 2018, 10:50:40 AM »
Could not eat/swallow without it!
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

whatnow

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Re: How effective is Evoxac/Salagen?
« Reply #7 on: October 04, 2018, 01:01:24 PM »
I have had dry mouth for YEARS, but assumed it was just age (I am 60). I also  had pain in my jaws and imaging showed my parotid glands are at the destructive stage. For me, the worst things were trying to talk much, and drying out so much at night.  It felt like somethng died in my mouth every night. I tried Pilocarpine and would say it might have given a 20% improvement. Then I switched to Exovac. I wasnt even sure it did any more, but the. i went back to Pilocarpine as a test and I would say it is another 10% improvement. I still cough for two hours every morning after rising, but my breath is not QUITE as bad. I would say the difference is just barely enough for me to want to continue the pills. I imagine I just dont have good results because it is not just that I am not producing saliva, but that my goads are destroyed enough that I CANNOT produce much, even with the pills. Other people say they get a ton of saliva—and I hope for you that is your experience. Best Luck

Michael1234

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Re: How effective is Evoxac/Salagen?
« Reply #8 on: October 04, 2018, 06:40:52 PM »
  Hello Des,

      I take Evoxac and it really helps ALOT with dryness.  It took a couple of months of taking it everyday to reach its full potential.
      I also take Coq10 ,  Omega 3, and a very good Probiotic.  The first year, I really struggled. Now, I manage quite well.
      Research and try any and all options that might help your specific case.   Once you find out what helps you, your body will get use
      to your "new normal" and you will feel better.             Best wishes Mike
     

Deseree

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Re: How effective is Evoxac/Salagen?
« Reply #9 on: October 06, 2018, 10:10:40 PM »
Thank you all so much for your replies  :)  I'm so glad to hear that there seems to be something that really takes the edge off of these symptoms. I keep hoping the doctors figure out what's going on with me, but since treating the symptoms is basically the way to go regardless of the condition, I will probably ask for one of these medications at my next appointment.
30 year old female. Positive ANA and RF. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.