Dry mouth and throat

Thank you, deidra.  I am 67 and all this started 8-9 years ago, probably.  Not long after my ovaries were removed, actually.  Started having GI issues, horrible nausea, lost 40 lbs.  very long story!  Have seen many doctors and Specialists. Had all kinds of testing done, blood, biopsies, MRI, CT scans.  Referred myself out to a GI doctor at Stanford who tried various drugs for "IBS" which did not agree with me. I was put on Gabapentin about 2 or so years ago for stomach pain. Well, I had gained weight back and now an e tea 20+ lbs! Trying to wean off this stuff. Nitpick do problems with my feet before Christmas last year, realized both big toes were numb, sole of left foot started burning. We are limited as to Soecialists here. Saw a Neuro doc who did some tests then referred me to Stanford!! They did more tests and punch biopsies and I was diagnosed with small fiber neutropathy. I insisted they follow the Cleveland Clinic protocol to try and find a cause. My B-12 was low but taking that hasn't helped. Referred me to the Pain clinic, we have none here. All they want to is prescribe meds and send me for counseling. In the mean time, my GI doc at Stanford referred me to another doctor that is trying to start a diagnostic clinic for tough cases. I have seen him once. He ordered a few blood and urine tests. I go back, again, next month. My husband has had it with this!  My PCP here will barely listen to me anymore, just says he is at a loss.  This mouth issue is horrible!  It isn't just dry, the tissue does not feel right (hard to explain).  And my tongue feels like it got burned. I also spit up mucus.  Scares me as afraid I am going to choke!  I have taken low dose Xanax daily since this all started.  I have no idea what doctor I could possibly see that I haven't seen already.  

During all this, I have cared for my parents then had my mother living with us. Just a few weeks ago, I put her in a small care home. It was just getting to be too much and I was also concerned something might happen to me and she would not be cared for. I have no siblings. Recently found she has a recurrence of her breast cancer at age 94!  They are going to try radiation so I need to get her through that.  I have got to stay on my feet and she has to take priority.  I am just overwhelmed and cannot find any relief regarding my health issues.  I see my GI doctor here tomorrow and that won't go anywhere either. I have been having a nagging pain in my colon and he may want another CT.  I do not need any more radiation!  Sorry this is so long. Doctors tell you to stay off the Internet but I am not finfpd ing any answers from them.

if others could describe their symptoms and what you do or take, I would appreciate it. Thanks!

I know of a Stanford Hospital very well here in the U.S..  I was born and raised not far from there, in the Bay Area, Saratoga, CA.  The only doctors I can recommend are Rheumatoid Arthritis Doctors, as they are the ones that take care of Sjogrens patients, as well as Lupus patients, and other auto immune issues.  Or a really good Neurologist, they deal with all things that have to do with our nerve system, like our feet.  The only other Doctor is a good Endocrenologist, as they have to do with all of our hormones, not just our female hormones, but ALL of them, and not just cancer patients.  Those guys can find all kinds of things quicker than most other doctors.

?It doesn't help that you have a LOT on your plate at the moment, aside from your health issues!!  That does not help the situation at all, but I DO understand what you are going through!  Like I said, my Mom has Lupus, and she gets very sick.  She is 83, and has never been sick a day in her life, except maybe a cold.  She only recently...in the last 3 years was diagnosed with the Lupus.  She was always so active all of her life, and just does not understand what is going on.  Even now, she does not understand why she gets so run down, and can not do things.  Her immune system is very low...like ours is, and she gets so sick, and is SO not used to this whole thing.  I am the one that has been like this for YEARS, and on top of it, I have back and hip issues.  NOW she understands what people go through, and doesn't know how we deal with the pain we are in.  I tell her we just have to keep going, we don't dare stop!  LOL  There are days when I can barely move, and I will stay in my robe, and will have ZERO energy, and feel like I am druged, I will sit here with my husband on those days, and he will put on some movies, and that is what we will do.  Just watch movies, and fall asleep on and off.  I am very lucky, I have a wonderful understanding husband, and he helps me a lot!  We've been married 38 + years, and we are retired.  He has back issues as well, so he has those days too!  He has been through 2 back surgeries, and a neck surgery, so we are understanding with each other!!  There is something about that is the wedding vows isn't there?  LOL  We both have a good sense of humor about things, and can still make each other laugh, and that helps a LOT...especially in this situation!!!  It really helps!!!  This getting old stuff is not for the faint of heart, that's for sure!!!  I think they have lied to us all these years...there is no such thing as "The Golden Years"...They are RUSTY Years!!!!  LOL

?I sure hope your Mother will be ok...94, that is great!!!  But, you have to remember, you have to take care of you too...if you don't take care of you, you won't be able to take care of anyone else...just make sure to rest up when you can...as much as you can!!!  Wishing you luck!  God Bless!  xo

I almost forgot...I take Imuran, which helps with the dry mouth a LOT, I just use a natural tear drops, plain saline, I just buy the generic kind.  Or you can ask your eye doctor what he would recommend.  My eye doctor said those are fine, as long as we don't use the ones with all the "get the red out" stuff in them.  Those can damage the eyes if used too often.  The saline ones can be used daily with no problems.  For the mouth, I chew Mentos sugar free gum a LOT, (Mentos is good if you have dentures, or partials, as it does not stick to them, just an fyi, I don't have either, but some people do) or you can also ask your dentist.  They can give you some names of things to send for.  The stores have a few things you can try, but I have found them useless.  They have toothpase, and mouthwash, but they only last for about 10 minutes.  I drink water all day long, and I keep a bottle of water by the bed at night.  I know the dry mouth is awful.  I wake up at night, and feel like I am choking, I am trying to swallow, and there is nothing.  Also, you MUST floss your teeth, due to the fact there is no saliva, bacteria will cause big problems with your teeth, and many Sjogrens patients can lose their teeth.  I also take Prednesone for the joint pain, as well as the muscle pain.  I can't take the Plaquinel, which is too bad, because it really worked for me, but it caused damage to my eyes in the first 3 months, which is NOT normal, I just happen to be one of the unlucky ones, and had to be taken off of it.  And once it causes damage, it can not be reversed, the damage is done.  I don't really notice it, but my eye doctor can see it in the back of the eye.

xo

Deidra, thank you so much for sharing information.  I know Saratoga, beautiful area.  I am stuck in The Central Valley but was born and raised in So. Cal.  I see a Rheumatologist here, on occasion. Might ask him about the Imuran uf it helps with dry mouth but I do not do well with meds and hate to add any more.  Yes, chew sugarless gum and am drinking sinethung constantly. Gum tends to aggravate my GI issues.  I have partials on top and all the teeth are loose, already lost 2 molars. Cannot wear a denture due to the dry mouth and sensitive palate. I vigilantly floss.  Also use all the Biotene products which are of little help.  Yep, about 10 mins.  Dentist gave me Prevident to use to brush with before bed.  A year ago, I developed Macular Degeneration in my left causing central vusion loss and I have to get eye injections.  Glad you said that about the Plaquil. One thing after another.  I am 67.  

Just saw my GI doctor here, only one I like, this morning.  He will look over all my records, GI or not.  Said if it is SS, not much I can do.  Ordered another MRI for a pain in my colon that won't go away but he thinks it may be adhesions from past surgeries. 

Sorry about your Mom.  I need to go for now and go see my Mom.

thanks!

I agree with all you have said to Margot49. Though I am in the UK (74yrs old) I probably had SS for many, many years before diagnosis. Chewing gum is my absolute must. I have tubs in the car, the kitchen and in my medical pouch which goes where I go. In that I have cellivisc ampoules and hylo forte pump for the eyes. SS sufferers MUST use preservative free replacement tears. Those with preservatives must not be used long term. I carry salivix pastilles as well as the gum. My meds include special toothpaste on prescription, with high fluoride content. The way to now clean your teeth is to not spit out/rinse, but swallow after brushing so as to keep the high fluoride content intact. Pain killers needed for aches and pains, osteo arthritis etc. As you say. One learns to cope. The best book I have ever read (and it's not too long) is 'Living with Sjorgrens Syndrome' by Sue Dyson. She mentions chronic fatigue, depression, family relationships etc. ISBN 0-85969-912-9. I just looked, and it is available on Amazon and has 4.5 stars. It's my bible.  Haven't yet got Reynauds but get very cold feet and hands by the end of the day. I agree, 'rusty years' is a good description. But as a friend said when I asked how she was, "nothing dropped off this morning" 

Hi Estelle 

I'm curious,  what exactly does this hylo forte pump do for you??  Did you have to surgically have this pump put in?  This is why I really love this site bc we can learn so much...proactive is the only way to go!  

I appreciate any help you can share wth me.

Warm regards,

Frustrated 

Yes, that would be a party stopper!  I have not had that problem, thank goodness.  My ENT doc did prescribe a med, Evovax or something, but I didn't take it, afraid to. I have pribkem with so many meds and take so many, am afraid to try it.  I have had sooooo many tests done. I think I was checked for sarcoidosis.  Just had another colonoscopy on Wednesday per request of a Stanford Doctor.  Nothing real significant but some pouch ing, 3 polyps, one being the type that can become malignant but very small, recheck in 5 years.  What is really scaring the Hell out of me now us being referred to Hematology at Stanford. The Neurologist I saw for the numbness and burning did a bunch of blood work. One test. Light chain ratio something, was elevated. Repeated in 6 months and it went up.  Talked to the new doctor I am seeing there and they want me to see Hematoligy.  Basically, they are checking for myeloma.  I am just at my whits end with all this.