Hello everyone. This is my first time posting (hope I'm doing it right!) I'm so glad to have found your site and I'm hoping someone can help me with this question.
I started taking Evoxac when I saw a rheumatologist in 2013 for dry mouth and dry eyes. At first it was like a miracle. I could go for hours with a normal feeling mouth and it even made my eyes feel great.
About 8 months ago, it started to become less effective and now it is at the point where it doesn't work at all. I tried Salagen and had no luck with that even in the beginning.
Has anyone had Evoxac just completely stop working for them? My rheumy mumbled something about my glands being pushed to the limit. Does that mean they are all destroyed? I am devastated as there are no other options to try. My mouth and eyes are so dry and getting worse rather quickly.
Hi and welcome to Sjogren's World.
Sorry you are experiencing so much discomfort.
It sounds like your Sjogrens is progressing a bit if you are consistently finding you are more dry than before. Is your rheumatologist treating the underlying inflammation, or just providing you with symptom relief? Your glands may still have some function that can be accessed if the inflammation is effectively controlled. It would be good to know what your other medications are, to be able to respond more specifically.
In the meantime, are you using eyedrops, mouth washes designed for dry mouth, and so on? That will help relieve some of the awfulness of the dryness at least temporarily.
Take care,
Genko
Thanks, Genko, you for your reply. Because I have not yet started having joint pain and fatigue, I am only being treated for symptom relief. Which I was managing ok until the Evoxac stopped working. I use the Biotene products and at night zylimelts. But my mouth is so dry now they barely melt. I am on Restasis for my eyes along with OTC eye drops and the only other things I take are vit. d, flaxseed oil and Tamoxifen (I also had breast cancer in 2013 - not a good year for me!)
What drugs do they use to treat inflammation? Maybe I should talk to my rheumy about that. I've been to several rheumatologists and they tend to dismiss the dry symptoms of Sjogrens which people like me find very debilitating.
I've had this disease since 2013 and I am very depressed about my future as it has progressed so rapidly already.
I'm not an expert but Plaquinil has helped stall my Sjogrens. Do you experience fatigue? I bet you do😒. You should be on something else ........ Maybe a low dose of prednisone?
I'm not a physician but your quality of life is being affected. I would tell your Dr everything you have stated here.
It wouldn't hurt to add something new to your treatment plan!
Hang in there!
Kathy
Dear way2dry, I'm so sorry things have gotten worse, just as we're welcoming you to Sjogren's World.
I agree with Kathy that aggressive measures are in order here. I don't know what medications you are taking already and what, if any, other conditions you may be dealing with.
And I know of nothing that can restore function, or have the same affect as Evoxac, but that doesn't mean that there aren't possibilities and measures you can take to feel better.
If your rheumatologist can't suggest options, you should of course seek another opinion and perhaps find an Ophthalmologist to help, as well. For many of us, seeking assistance from doctors affiliated with a teaching hospital (University Medical Center) is often the best way to get what we need.
Again, welcome.
Hugs, Elaine
Plaquenil is the first medication usually used to control inflammation in Sjogren's. Many of us find that it helps a great deal, while others have had to use other medications. It may take some time and patience to find the right one for you.
One thing that might help is to keep track of all of your symptoms, even if you think they may not be related. Include things like changes in your digestion, headaches, issues with your balance, urinary problems, feeling hot or cold when you don't think you should. All of these can be related to Sjogren's, believe it or not. Sometimes when the doctors hear the total list, they realize something more is going on than "just" dry eyes and mouth (which is bad enough).
Take care,
Genko
I would double check the manufacturer and see if it changed, or call the company and complain. They may have changed ingredients as well..you would be surprised???
just a though??
Gursie
Did they switch you to generic? When the generic came out I tried it and it did not work for me. Evoxac has been a lifesaver for me. Definitely check to see if they switched you.
Anna
Another thing to consider is the cancer medication you are on that I see blocks estrogen production could be counteracting against Evoxac to cause more dryness that it can alleviate . Just a thought as well.
Kimberly
Thanks for your replies! I will definitely try some of your suggestions. My priority is to find another rheumy. This one is my third, so far...
Quote from: gurs on March 14, 2015, 04:37:02 AM
I would double check the manufacturer and see if it changed, or call the company and complain. They may have changed ingredients as well..you would be surprised???
just a though??
Gursie
Bingo - actually my last refill the capsules have changed and now have black markings that say Evoxac and the dose on the capsule. I called Walgreens and it's distributed by Ranbaxy. When I search engine images - apparently Ranbaxy in the US is only the distributor.
Image search reveals this: http://www.kmuh.org.tw/med/medimage/images/e/Evoxac%2030mg2.jpg
Which is exactly what my rx was filled with last refill.
Needless to say I will be shopping around. I don't know what language that is - but it sure isn't American or European.
I knew it!!!!! ughhhhh..how frustrating. I would call and complain. I make CVS order all my same brands that I know work for me.
I thought I heard that Ranbaxy had plaquenil that didn't work well either? seems this company is not reliable?
Gursie
Quote from: gurs on March 16, 2015, 05:31:57 AM
I knew it!!!!! ughhhhh..how frustrating. I would call and complain. I make CVS order all my same brands that I know work for me.
I thought I heard that Ranbaxy had plaquenil that didn't work well either? seems this company is not reliable?
Gursie
I spoke with pharmacist last night, mainly as since I started the Ranbaxy generic my mouth is getting dryer every single day. I thought maybe I was getting bronchitis then VOILA LIGHTBULB - all that thick crud started a day or two after starting the Ranbaxy generic.
Ranbaxy is apparently a distributor and Walgreens said they don't know where Ranbaxy gets their generics from. Yeah right. But they did state that the Pack generics are made in the US. Uh huh... All I know is the Pack generic has been working fine for me.
Anyway I was due for refill and I requested the Pack generic version which is what they were filling it with before they changed.
Meanwhile I am in misery. I was woken up three times last night with my mouth drier than a desert. That does NOT work for me at all!!
Thankfully I had some xylimelts on hand.
Not like we don't have enough on our plates to contend with - so now it would appear we need to add vigilance on what frigging generic brands our meds are being filled with.
Sigh...
I get my prescriptions filled at CVS which by the way has recently become the main supplier of prescription drugs for my health insurance plan.
I checked my pills and they are white with black markings and have Evoxac and 30 mg on them. They look just like the picture in a previous post. However the label on the bottle says cevimeline which makes it sound generic.
So, what am I getting? I'm confused!
Are they made in China now?
Quote from: way2dry on March 16, 2015, 10:47:27 AM
I get my prescriptions filled at CVS which by the way has recently become the main supplier of prescription drugs for my health insurance plan.
I checked my pills and they are white with black markings and have Evoxac and 30 mg on them. They look just like the picture in a previous post. However the label on the bottle says cevimeline which makes it sound generic.
So, what am I getting? I'm confused!
Are they made in China now?
I don't know if they are made in China - but that sure didn't look to be European, Canadian or English to me. What flagged me was this last time mine were also marked Evoxac 30 mg - in the black shiny kind of ink. Evoxac is the Brand name I thought. My prior refills had unmarked off white capsules.
I'm still digging into the issue. I did come across an article in 2012 that Ranbaxy (US) had partnered with India for generics. But that sure didn't look like Indian language to me.
I have a friend I will send that link to and ask what language that is.
Okay - I sent link to friends of mine who are fluent in the eastern languages. They might be out of town, but as soon as I hear back from them I'll post an update.
Meanwhile, thus far the only form of generic evoxac I can find that matches precisely to what my rx was filled with looks to be Kaosiung Medical University.
link #1: http://www.kmuh.org.tw/med/KWdata_gif.asp?med_id=1EVOXA
(very faint but is in top left of screen)
Link #2 where is that university? https://en.wikipedia.org/wiki/Kaohsiung
(Taiwan)
Separate but related in a general sense to generics - 2009 article: http://www.today.com/id/30940044/
Ranbaxy (who according to my pharmacist is one of their distributers): http://www.ranbaxy.com/partner-with-us/
Now according to this link, Ranbaxy is an Indian based company (scroll in page to find the quote below) date Sept 2013:
QuoteOur report shows you how companies can seize opportunities and expand their businesses.
India - analysis of leading generic drug firms
Our new work also assesses 10 Indian generic drug producers, including these:
•Ranbaxy Laboratories
•Cipla
•Dr. Reddy's Laboratories
•Lupin
•Aurobindo
•Wockhardt
•Sun Pharmaceutical Industries.
Anyway I don't like it. So at least my pharmacy is willing to fill with a different manufacturer.
Probably why my Evoxac wasn't working as well lately. Duh on me - I noticed the markings but wrongly presumed pharmacy ran out of generic and filled it with brand. Won't make that mistake again!!
EDIT: More: Evoxac specific - in 2012 Ranbaxy launched generic evoxac into the us - sourced by Daiichi Sankyo, Inc (a Japanese company)
http://www.ranbaxy.com/ranbaxy-launches-authorized-generic-of-evoxac-in-the-u-s-healthcare-market/
And thanks to google translate - at least as far as the language on the one site specific to Evoxac - it is Chinese with some Japanese thrown in (depending on which section of the page about Evoxac one copies and pastes into translator) . Hmmm, go figure.
I have never tried Evoxac, but Salagen needs up to three months, and took almost six, to work for me. That isn't to say I get a :burst: of saliva. I don't, most of the time. I barely notice anymore but do have saliva but Salagen also helps my eyes and other parts of my body. I also find it needs to be combined with Restasis for best effect.
Good luck.
Hi-
I wanted to add that I have found that a curcumin supplement helps my dry mouth some... I actually get saliva from time to time- after taking it for a few days/weeks. It is an anti-inflammatory. Not saying it would do what the prescription does- just another thought. It doesn't seem to help any of the other dry areas, unfortunately. I use the xylimelts at night for my dry mouth. So sorry- that dry mouth feeling when trying to sleep is the worst :(
I hope you find something that helps.
Rachel F.
I take turmeric/curcumin also.
To followup on my prior post on the Ranbaxy version of Evoxac - my friends confirmed the language in the link to the image is in fact Chinese.
Meanwhile, my pharmacy filled my last refill with Pack generic version and that is working MUCH better for me.
Kudos to whoever (I am on second page so can't see opening post) started this thread. I hadn't made the connection that the reason I was drier and even mucus getting really thick was tied into the Ranbaxy generic which I had not had before.
Thanks again for your helpful suggestions!
litliwlowa -- Did you say that you got the Pack generic version from Walgreens and that it was working better for you?
My only choices from CVS are Ranbaxy and Apatax. Both of these have plants in India and been in trouble with the FDA. ( some recently)
Think I'm going to try the Pack version.
Thanks for enlightening me on generics. I had no idea!
Quote from: way2dry on March 21, 2015, 11:18:00 AM
Thanks again for your helpful suggestions!
litliwlowa -- Did you say that you got the Pack generic version from Walgreens and that it was working better for you?
My only choices from CVS are Ranbaxy and Apatax. Both of these have plants in India and been in trouble with the FDA. ( some recently)
Think I'm going to try the Pack version.
Thanks for enlightening me on generics. I had no idea!
I have to request specifically the Pack generic, otherwise they fill it with whatever they choose. My RX coverage is CVS Caremark - I do not use CVS though.
Thus far Walgreens has been pretty good about if I request a specific generic so far they can get it.
ok, so im going to CVS to get this in generic..which brand is best?
thanks
Gursie
I went to CVS yesterday, and the only brand she said she can get is Ranbaxy. She tried to get the pack generic, but couldn't.
Uhmmmm.
Gursie
Quote from: gurs on March 24, 2015, 04:30:01 AM
I went to CVS yesterday, and the only brand she said she can get is Ranbaxy. She tried to get the pack generic, but couldn't.
Uhmmmm.
Gursie
Try calling your local walgreens. Mine has been very good at getting alternative generics upon request. It may be a day or two extra wait as they have to order it from their warehouse. And they don't charge anything extra for doing that.
My insurance will only allow discounted price of 3.00 at CVS, and if I get it from Walgreens, or other, its 33.00. Not sure what to do.
I may give the Ranbaxy a whirl..ughhhhhh..this company is also supposed to make plaquenil that doesn't work either?
Gursie
Quote from: gurs on March 25, 2015, 04:35:38 AM
My insurance will only allow discounted price of 3.00 at CVS, and if I get it from Walgreens, or other, its 33.00. Not sure what to do.
I may give the Ranbaxy a whirl..ughhhhhh..this company is also supposed to make plaquenil that doesn't work either?
Gursie
Yes, Ranbaxy is the same company re: plaquenil. Oddly, I've had no issues with the Ranbaxy generic of plaquenil. Just the Ranbaxy generic of Evoxac...
It would appear that our meds are going a similar direction of our groceries. The AFFORDABLE (groceries) are the worst for us (for those of us on fixed income). Curiously, increasingly more the cheapest generics that for some are ineffective or less effective we are being nudged into by pricing and coverage. Troubling to me is I cannot find ANYTHING on the clinical pharmacology for either generic - like the binders etc. And what is in the black ink markings on the Ranbaxy generic? It almost has the appearance of MICR encoding ink. (my career was banking)
Anyway, $3 is better than $33 - and it can't hurt to give the $3 one a try. But if you notice it stops working (like I experienced on the Ranbaxy one) - then it may well be worth the extra $30 to try the other generic.
If the ranbaxy one doesn't work for you after a run with it, then there's no point in spending $3 for a treatment that isn't alleviating the dry dry dy.