I have been a member of this board for about 6 years. I read posts here and there but mainly post when Im in the middle of a flair. I know thats not being a good member but with 3 kids my life is very busy.
My dryness has been slowly getting worst. Since the beginning of this year the changes had been very drastic. I'm so emotional right now. I haven't seen a rheumatologist for about 3 years. Today I had an appointment with my internist. I normally see him every 6 months. He is sending me to the rheumatologist and today he did the Sjogrens panel testing to see if the results have changed. I have been testing negative and I havent done a lip biopsy. Im diagnosed based on symptoms only.
I get so emotional when I know this is only getting worst. How do you cope with being sick at such a young age?
Also, is there any supplements you take to relieve mouth dryness? He prescribe me evoxac but it seems impossible to get it, none of the pharmacies around me has it available brand or generic. They told me they going to try to get the generic by Saturday.
What brand of Omega do you recommend?
I have been surviving with no supplements or medication for almost 4 years. I was on plaquenil for 2 years but I got pregnant and never went back to any medications after having my son.
Today is one of those days that I dont see a bright future.....
Hi Cindy,
I'm sorry you are going through a bad flare. I am too. It really sucks!
There is probably some benefit to having an official Sjogren's diagnosis because it can help doctors be aware of any related issues or complications you might wind up having. So good for you for pursuing that.
If the labs are not indicating Sjogren's (yet) you are still having legitimate problems. It sounds like your internist is working with you on treating them.
I imagine what with caring for three kids and having tiredness, it is hard to check every pharmacy in town. You are online, so you have access to a computer. You could try an online pharmacy.
I treat dry mouth symptomatically with Biotene oral rinse because I still produce a decent amount of saliva. Your doctor prescribed exovac, so a mouth rinse alone probably won't be enough for you.
I also take daily:
- B complex vitamins and vitamin C
- Vitamin D (this seems to be especially important for people with Sjogren's)
- Fish oil capsule for joints
I try to exercise at least 3 times a week. This is really hard, and often I have to just make myself do it. And some days (like today) I only manage to get the dog out for a short walk, and that has to be enough.
Sometimes I don't see a bright future either ... There are some really promising drug treatments in development. They are probably 2 or 3 years from being on the market.
I really do think this is going to get better for all of us.
The pharmacies around here didn't stock Cevimeline (Evoxac) until I got my prescription. Now my local pharmacy keeps a small stock of it for me - ask yours to do the same.
You could also use a mail delivery pharmacy (Express Scripts is one) and have the pills shipped to you.
I haven't found any supplements that seem to help. Some folks say they've had success with CoQ10/Ubiquinol.
I do find many of the typical dry mouth rememdies to help, but they usually need to be applied often depending on the severity - below is my short list of go-to items:
- Chewing gum. Just about anything will work - but the drier you get, the more sensitive your mouth will be, so avoid the minty gums. Ice Cubes grape has been my mainstay - I buy it by the 100 count bag.
- Dry mouth toothpaste. Biotene is easily available, my favorite is Oral7 (available from amazon). Brush multiple times per day when your mouth is dry.
- Dry mouth rinse. Same as above - biotene is easily available - but I prefer those that still have enzymes (like Biotene used to) - Oral 7, Rite Aid brand and CVS brand still do. If you're really dry, a rinse with mineral/veggie oils (or straight oil pulling) will probably help a bit better. I believe Salivart and Oasis were good ones, and I do like Jason mouthwashes (though they can be strong and might cause irritation).
- Dry mouth gel. If you're really dry, gel is great, especially for sleep. As always, Biotene is likely on store shelves in your area. Again, I use Oral 7, or GC dry mouth gel.
- Xylimelts. I've had mixed results with these, but they were best when I was really dry. I use two at a time for sleep.
There's a ton of other stuff out there, but these are the things I've found most helpful.
Thank you so much for your feedback. I don't know how with in days it got really really bad. My mouth smells all the time. I don't know how to stop that. My self-esteem is on the floor. I don't want my husband to get near me.
Cindy, my dry mouth came on the same way. I'd never noticed it until one day it went completely bone dry! I went to Walgreens online and bought everything in the Biotene line, the rinse, gel, spray, and toothpaste. My favorite is the gel but as Pete0211 said, you do have to keep re-using. I use the rinse every time I pass the bathroom.
I got a prescription for Evocax and had to wait for the pharmacy to get it. Just tell them to order it, that's their job! When you get it, go cautiously - I've never had a medication make me as sick as that did. So I wouldn't advise you to take it and then go out to dinner.
Good luck, I hope you feel better soon!
I haven't been on much in awhile either, but my brother in law has been a few weeks in critical care after a massive heart attack with many complications and was only given a 20% chance of living. My sister his wife just turned 50, and he is only 53. He never went to the doctor, and always busy working.
Life just happens,
susanep
Just wanted to echo what Pete says about chewing gum. It has made a very big difference to my mouth dryness. Unless I'm actually eating a meal I have chewing gum in my mouth all the time. Just a small amount (half of one of those little portions) kept in the side of my mouth, I'm not chewing away all the time, but just having it there helps keep my mouth bearably moist. I believe it will also help you with the smell you're worrried about, as it neutralises the acid which causes tooth decay.
If the exovac doesnt work there is another med called Pilcarpine that also stimulates saliva.These drugs will make you sweat so don't be surprised. I took the pilocarpine and had to start out at 1/2 dose cause I got nauseated at first. Good luck. Irish
Sorry you are having so much difficulty with the dryness. Evoxac or a similar prescription may help you. I use Ayr nose gel. I chew Trident gum a lot, use special toothpaste for dry mouth. It's prescription with a lot of fluoride in it to prevent cavities. I use almond oil on my skin right after I shower. I have used Biotin mouth gel and sprays to help with mouth dryness.
Here is information from John Hopkins/ Sjogrens' Center:
Preventing Dental Decay: A Guide for Salivary Hypofunction Patients
A handout compiled by:
Alan Baer, MD; Athena Papas, DMD, PhD; Mabi Singh, DMD, MS; James J. Sciubba, DMD, PhD
https://www.hopkinssjogrens.org/disease-information/treatment/preventing-dental-decay/
I take pilocarpine (supposed to be 5/day.. but, I take 4). It can produce a light sweat flash in me.. but, not all the time. *I once took the med before a dinner outing.. beautiful peacock blue silk tailored pants.. pubic area sweat flash.. not pretty. LOL)
Additionally an appt with Ophthalmologist would be in order.
With young and even older non-driving kids.. summer can be exhausting (even for healthy people),
I found it less stressful to get the kids out of the home as much as possible.. they are messy aren't they! Park where other kids entertain each other, take water and easy sandwiches, fruit. We were lucky having a local lake and later a community pool.
When my granddaughter came here I took a nap with her..later put her outside with the sprinkler going and then washed her outside with baby shampoo in the sprinkler.. and in bed by 8:30. Rainy days were a visit to library for story-time/craft sessions. Inside movie night was sheets on the floor and treats... and we all did a familyroom sleep night.
Sometimes you just need to break things down to simplicity and novelty/fun.
Hoping you find some relief.
Oh....dear,
I'll just cut to the chase: I use pilocarpine. Actually (no one will believe this) but currently I take Salagen as my drug company (I order a 3 month supply) has substituted the brand name for the generic. Cheaper. I can only figure they buy it in bulk. It's the only one I've ever used, and though it took me over a year to adjust to a successful dosage (it caused me stomach stuff) I have been pleased. For some reason favorable results vary. This may be every few weeks, or several months or a couple of days in a week. It just varies. I don't think it has anything to do with SjS, I think it's me.
As to availability, that's crazy. Don't know where you live, but after i'd been on it several months, once my local Walgreen's was out (this was first year I took it and bought it month to month). I asked how far the nearest Walgreen's was which DID have it. It was less than 20 miles away. I drove there to get it. WELLWORTH THE DRIVE! I couldn't live without it. I take my lowest dose in the a.m. as that was when I suffered the flop sweat as described by quiet dynamics. It works. I don't have that anymore. When I take my night time, now I take it before I get in bed. That keeps me from having any drooling and or the sweat. And as to the sweat, mine (my body) was a gumminess. Not beads of sweat. If i'd bathed the night before, I'd have to bathe again in the a.m.
As to dry mouth remedies, remember: there are Sjogren's dry mouth treatments, then there are products out there for "normal" dry mouth probs. Don't get sucked into all that stuff. For ME...me alone...the ONLY successful OTC dry mouth product is Biotene Dry mouth GEL. If you can't find it, you can get it from Amazon. If you aren't a prime member, shipping can be pricey unless you order enough other stuff. As to chewing gum, that only works if you have saliva from your salivary glands. By the time I was dxed 5 of my 6 were atrophied. Needless to say, I was VERY old.
Good luck, enjoy your children, and enjoy their summer. :)
ccc
I really like the Biotene products....toothpaste, gel and mouthwash.
I've used other ones for dry mouth and don't care for them as much.
I also use the sugar free mouth lozenges almost every day. The lemon ones for cough. (Any brand)
Still another thought, I believe that drinking a lot of water throughout the day helps a little, as well as avoiding obviously salty foods liked canned foods or pretzels, etc.
These last two items might not make a huge difference, but I do believe it helps a little and every little positive is a good thing.
There are prescription meds to ask your doctor about if these things don't help out.
I have had Sjogren's and lupus since I was 32 and I had my little girl who is now 22. It is very hard to live a life when you know you're going to be chronically ill. One thing that has helped me is I also have an immune deficiency and for years I got IVs each month at the hospital where people were on dialysis waiting for a kidney transplant or having their foot amutated, and I left each time thinking thank God that isn't me. So if put some perspective on how much worse it could be for myself. It doesn't take away the struggle but the reality is all of us are going to age and we have to try to keep living in spite of it. Sometimes I feel like I'm at war with my own body and that is a sad feeling but, it is something I have to deal with so I do.
I take vitamin B12 and tons of vitamin D. I can't take Omego fish oil because I'm allergic to fish and trying to find an alternative because I've been told is very helpful.
Eat an anti-inflammatory diet which I think is extremely helpful, exercise and trying to keep your muscles in good shape, and do things even when you don't feel you can.
In addition to Sjogren's I also have Lichen Planus in my mouth - so dry and painful.
I've tried pilocarpine but couldn't tolerate the side effects. Mint, lemon or other irritating flavors burns, so I'm limited to Extra Watermelon flavor and bubble gum flavored gums. They work well for me. Also sips of water.
I couldn't tolerate Biotene - it has mint as do most toothpastes for sensitive mouths. Sadly fluoride is irritating so I have to rely on my drinking water for fluoride. Because of this I use Squigle Tooth Builder Sensitive Toothpaste and rinse often with water.
Some people suck on sugar free mint or lemon candy.
Years ago when I used to be a member here before the changes, I posted a review on a candy that stuck to your gum (yes it was designed to stick) that you could keep in your mouth while you slept or in a discrete area so you could talk etc. without having obvious gum or candy in your mouth. It worked well, except at night it not only stuck where it was supposed to stick, but my tongue also stuck to it which wasn't fun. I don't know if this product is still made.