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Old 01-19-2010, 09:21 PM   #1
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dolby HB User
How Bad Can SS Complications Get?

Was told I had high SSb antibodies in October 2009. At that time, I wasn't aware of any Sjogren symptoms. Starting in January, however, my mouth has become very dry. I wake up with a dry mouth at night and swallow from a water bottle which I keep near. Also, my throat is very dry. I have to dunk my toast in water so it would travel down my throat.

No dry eyes yet. In fact, my eyes were watery until a few weeks ago. Saw an opthlamologist who suggested that the watery eyes may be a response to the eyes becoming very dry.

No other symptoms other than these. But I've had constipation for the last 1.5 years. My rheumy thinks it's probably SS-related, just like the throat being devoid of moisture. My constipation is entirely due to lack of moisture in the colon, not really from how hard the stool is. Nothing has worked so far except for Milk of Magnesia.

If I'm showing these SS symptoms now, how bad will my other internal organs get? Am I looking at complications as my internal organs completely dry out?

 
Old 01-21-2010, 05:21 PM   #2
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surreygal HB User
Re: How Bad Can SS Complications Get?

Quote:
Originally Posted by dolby View Post
Was told I had high SSb antibodies in October 2009. At that time, I wasn't aware of any Sjogren symptoms. Starting in January, however, my mouth has become very dry. I wake up with a dry mouth at night and swallow from a water bottle which I keep near. Also, my throat is very dry. I have to dunk my toast in water so it would travel down my throat.

No dry eyes yet. In fact, my eyes were watery until a few weeks ago. Saw an opthlamologist who suggested that the watery eyes may be a response to the eyes becoming very dry.

No other symptoms other than these. But I've had constipation for the last 1.5 years. My rheumy thinks it's probably SS-related, just like the throat being devoid of moisture. My constipation is entirely due to lack of moisture in the colon, not really from how hard the stool is. Nothing has worked so far except for Milk of Magnesia.

If I'm showing these SS symptoms now, how bad will my other internal organs get? Am I looking at complications as my internal organs completely dry out?
Hi there:
First of all, I'm sorry you've joined the SS gang. Having said that, there is life after SS! I'm sorry too that you're exeriencing such annoying symptoms. With regards to your question about "how bad will it get?", there is no way to know the answer to that. Some people never go beyond dry eyes and mouth where as other people like me, end up with all types of complications including Central Nervous System (CNS) involvement and vasculitis. In 2002 I got so sick I developed transverse myelitis rendering me unable to walk for several months. That is rare--so don't worry about that!
Organ drying can be progressive, or it can stay at the same level unchanged for years. There is no way to know what to expect there, either. I hope you don't worsen. In fact, you may find that during remission periods your symptoms abate and fade to a point where you barely notice them. I hope this happens for you.
With regards to constipation, I had that problem really badly too until I gave up meat and became a "pescatarian"; a vegetarian that still eats some seafood/fish. I eat a tremendous amount of fresh fruit and vegetables; I don't eat binding food such as potatoes, white bread, rice, etc. Now I rarely have problems with my bowels unless I slip and eating the "binding" foods again.
I recommend joining a local support group. The Sjogren's Syndrome Foundation in the U.S.A. and the Sjogren's Syndrome Society of Canada each have local support groups. It has helped me hugely being able to meet and talk with other SS people. We laugh and joke and make each other feel better. By meeting in person, we don't feel isolated or depressed, which can easily happen with this type of disease.
Do you have a good rheumatologist? That is essential. You need good medical support, as well as social support now.
Take care and I wish you well.

 
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Old 01-22-2010, 08:34 AM   #3
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Madison104 HB UserMadison104 HB UserMadison104 HB User
Re: How Bad Can SS Complications Get?

Hi everyone. I have sjogrens and I am MISERABLE. I also have Lupus. I am back on the plaquenil and praying it will help with my dry eye symptoms. When I use the fake tears, my eyes clog and can not get rid of the fake lubrication so I keep getting eye inflammation! Geeesh.... I am taking in more water...and the prune juice and the cetrical (sp) seem to be helping with my constipation.

I am very sick of my eyes right now....they always hurt, and are always inflammed. Does anyone here know if plaquenil can help with this?
Thanks and I hope everyone feels better soon...I am sorry everyone suffers

 
Old 01-22-2010, 08:37 AM   #4
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Re: How Bad Can SS Complications Get?

Dolby, my doctor had me get the biotene toothpaste and the biotene mouth rinse for dry mouth. It really has helped me a lot. Maybe you could give it a try. FYI...the stuff was 10 bucks for the mouth rinse at Rite-Aide but only 5.99 at a Hanafords.
Hope this helps some...
Madison

 
Old 01-28-2010, 04:59 PM   #5
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dolby HB User
Re: How Bad Can SS Complications Get?

Thanks for your suggestion. My mouth and throat get real dry early in the morning. When I sleep, I have some water next to me. But it seems manageable. As long as I get some water in me, I'm usually ok. When I try to eat breakfast, sometimes I have to dunk my toast in my coffee or milk to make it go down my throat.

But the most annoying and debilitating thing is my constipation. In fact, I saw my rheumy today and she wasn't so sure if it is due to SS. My SS actually predates my SS diagnosis and my dry mouth symptoms. I was diagnosed with antinuclear antibodies back in 10/2009 and I didn't start having a dry throat/mouth until about the same time.

I had a colonoscopy done last month primarily because of my constipation. Nothing wrong. Nothing works except Milk of Magnesia. Fiber/water make it worse. Colace doesn't work. Metamucil, Citrucel, MiraLax ... all don't work Magnesium citrate, well, that will give me diarrhea. I'm not sure if I can call that "working!"

But now I've become so habituated to MoM that it's become less effective. I'm now reading up on some probiotics and digestive enzymes to see perhaps that will help. My rheumy told me to go see a GI but my PCP is one and he is cluelsss why I'm so constipated. So is this SS related? Possibly. Perhaps diabetes-related? Possibly, I'm T2 diabetic and was diagnosed 6/2009. But my endo doesn't think my diabetes should be bad enough to have caused damages to my intestines. You can never tell. I really don't care what it is. I just want to relieve constipation!

Quote:
Originally Posted by Madison104 View Post
Dolby, my doctor had me get the biotene toothpaste and the biotene mouth rinse for dry mouth. It really has helped me a lot. Maybe you could give it a try. FYI...the stuff was 10 bucks for the mouth rinse at Rite-Aide but only 5.99 at a Hanafords.
Hope this helps some... Madison

Last edited by dolby; 01-28-2010 at 05:01 PM.

 
Old 01-29-2010, 09:35 AM   #6
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surreygal HB User
Re: How Bad Can SS Complications Get?

Hi There:
Yes, SS can and often does cause constipation. It dries out all the organs of your body.
Like you, my constipation pre-dated my SS symptoms, but I think I probably was already sick with SS but simply didn't realize it yet. I had symptoms off and on in my late teens/early 20's and now I suspect that was the beginnings of SS.
What I suggest is a complete dietary overhaul. That worked for me. I rarely have difficulty with constipation now. But, I eat a predominantly vegetarian diet, with lots of liquids too and very little bread (even whole grain bread is too binding for me usually). I am not completely vegetarian; I still eat fish and seafood occassionally but all the veggie roughage seems to be the key for me. It is also important to establish regular voiding routines; the body likes to know what it can expect.
You asked how bad SS can get. Well, that is very individual. Recently, I've started having seizures. I've just been forced to surrender my driver's lisence for 6 months because Canadian law requires drivers to be a minimum of 6 months seizure free to drive. My neurologist has commenced me on a mild anti-seizure medication which so far I'm only taking at night. As of next Wednesday, I must start dosing in the morning before work, too. I'm not looking forward to that. I don't want to feel snowed. But, it's better than having another big seizure, which it looks as though happened sometime Monday night when I chewed up my tongue on both sides. I can't believe I didn't wake up while I was chewing on my tongue.
Not having the ability to drive is going to be a big inconvenience to me. I don't drive alot, because I'm within walking distance to work and many shops, but when I want to have the freedom to drive, I don't want that right removed from me. But, I don't have a choice. My insurance would be voided if it was learned that I ignored the suspension.
My complication is rare. I've known for years that I have brain lesions, and that they cause me multiple sclerosis like symptoms. Just this past year I've begun having seizures and the neurologist doesn't know why. It's frustrating.
I also have all the typical SS symptoms, and I have to ensure I stay well hydrated.
Have you seen a Naturopath about the constipation? They are usually pretty good about recommending dietary changes.
Anyhow, best wishes to you.

 
Old 01-31-2010, 08:05 PM   #7
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dolby HB User
Re: How Bad Can SS Complications Get?

It's pretty eyeopening and disheartening: vasculitis, seizures, brain lesions. Just when I thought I was on my way to controlling my blood sugar, I find out I have Sjogren's.

What's more, I have become a lower carber who consumes about 50-60g of carbs to control my T2 diabetes. Usually, I'm ketogenic. And this diet is full of meat: fish, beef, eggs. I guess I could become a "pescatarian" and still control my BG. I may have to eat lots of tofu and one of those Shirataki or Konji noodles (< edited > I hope these are not "binding") when I give up beef. It will be another dietary change if I do it. Right now, though, I wanna experiment with perhaps probiotics to see if they will help. This weekend, I tried Brazilian nuts to see if they will help, after reading posts that say these nuts help. Well, it didn't help me much! And these Brazilian nuts aren't very tasty either! Neither are these filberts that I bought! Perhaps I should give Xylitrol sugar alchol a try, too! Some people swear by it.

But I do wonder: I can feel how dry my esophagus is when I wake up in the morning. It feels like I walked 100 miles across the Sahara desert, completely dehydrated. I wonder just how my other internal organs are faring if the only one I can feel (the esophagus) is dried out and burning.

Quote:
Originally Posted by surreygal View Post
Have you seen a Naturopath about the constipation? They are usually pretty good about recommending dietary changes. Anyhow, best wishes to you.

Last edited by hb-mod; 01-31-2010 at 11:05 PM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

 
Old 02-02-2010, 02:14 PM   #8
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Tootie1952 HB User
Re: How Bad Can SS Complications Get?

Quote:
Originally Posted by dolby View Post
Was told I had high SSb antibodies in October 2009. At that time, I wasn't aware of any Sjogren symptoms. Starting in January, however, my mouth has become very dry. I wake up with a dry mouth at night and swallow from a water bottle which I keep near. Also, my throat is very dry. I have to dunk my toast in water so it would travel down my throat.

No dry eyes yet. In fact, my eyes were watery until a few weeks ago. Saw an opthlamologist who suggested that the watery eyes may be a response to the eyes becoming very dry.

No other symptoms other than these. But I've had constipation for the last 1.5 years. My rheumy thinks it's probably SS-related, just like the throat being devoid of moisture. My constipation is entirely due to lack of moisture in the colon, not really from how hard the stool is. Nothing has worked so far except for Milk of Magnesia.

If I'm showing these SS symptoms now, how bad will my other internal organs get? Am I looking at complications as my internal organs completely dry out?
I've had Sjgrens since I was young. Most of my teeth have had root canals or caps. Nowafter years of going back and fourth to the dentist I am starting to lose my teeth. I have no salve to speak off can not eat anything dry even if I am drinking somtimes I still get choked. I have no tear duct on the bottom they dried completely up and my eye doctor put plugs in my top ones to try to keep them open. No control over tear flow. My skin is so dry that nothing helps for long. I have also had trouble in my digestive system from sjgren's. I could go on but u wanted to know about the head if I remember right. I also Have brain fog because of sjgren's. I read about it at Sjgren's Founfation site. My friends just always thought I foggy.

 
Old 02-02-2010, 02:20 PM   #9
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Re: How Bad Can SS Complications Get?

I can't eat fruit or anyfoods with acid or spicey because I get ulcers in my mouth if I do.
Keep water with me even take it to church, funerals ,everywhere.

 
Old 02-02-2010, 02:22 PM   #10
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Re: How Bad Can SS Complications Get?

Quote:
Originally Posted by Tootie1952 View Post
I can't eat fruit or anyfoods with acid or spicey because I get ulcers in my mouth if I do.
Keep water with me even take it to church, funerals ,everywhere.

 
Old 02-02-2010, 02:39 PM   #11
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Re: How Bad Can SS Complications Get?

Quote:
Originally Posted by Madison104 View Post
Hi everyone. I have sjogrens and I am MISERABLE. I also have Lupus. I am back on the plaquenil and praying it will help with my dry eye symptoms. When I use the fake tears, my eyes clog and can not get rid of the fake lubrication so I keep getting eye inflammation! Geeesh.... I am taking in more water...and the prune juice and the cetrical (sp) seem to be helping with my constipation.

I am very sick of my eyes right now....they always hurt, and are always inflammed. Does anyone here know if plaquenil can help with this?
Thanks and I hope everyone feels better soon...I am sorry everyone suffers

 
Old 02-16-2010, 02:16 AM   #12
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cricket183 HB User
Re: How Bad Can SS Complications Get?

Dolby,

I also had severe dry mouth. My rheumy started me on a medication called Salagen (generic name Pilocarpine). It helps to increase saliva production. I still have to stay well hydrated and keep a water bottle by my bedside but the medication really does help.

Cricket

 
Old 03-12-2010, 09:20 PM   #13
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Talking Re: How Bad Can SS Complications Get?

Quote:
Originally Posted by Madison104 View Post
Hi everyone. I have sjogrens and I am MISERABLE. I also have Lupus. I am back on the plaquenil and praying it will help with my dry eye symptoms. When I use the fake tears, my eyes clog and can not get rid of the fake lubrication so I keep getting eye inflammation! Geeesh.... I am taking in more water...and the prune juice and the cetrical (sp) seem to be helping with my constipation.

I am very sick of my eyes right now....they always hurt, and are always inflammed. Does anyone here know if plaquenil can help with this?
Thanks and I hope everyone feels better soon...I am sorry everyone suffers
Hey Madison. I just found this site and read your thread. Have you found any answers to your dry eye problem? I was diagnosed with SS almost 2 years ago. It took my opthalmologist to finally find out what was wrong. I had asked her if I possibly had Sjogren's, gave her my symptoms (including keratoconjuntivitis sicca). She sent me to a rheumy and there it was...finally a diagnosis that would reassure me that this really was not all in my head, lol. I asked my opthal about Restasis eye drops. I am from Canada, and they are not legal here as yet...go figure! But, she has the okay to order them, once they were passed by Ottawa on a patient to patient basis. Luckily I was able to try them. This is a very effective prescription eye drop. I also have red eye, especially the right one. My eye is always "blood shot", and painful. I was told to do warm eye compresses, followed by washing the eyes with baby shampoo, and then the Restasis. Hey, worth trying!! Works for me. I also use Bion Tears when needed as well as night time eye gel. And drink water to hydrate!! God bless!

 
Old 03-14-2010, 06:37 PM   #14
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Re: How Bad Can SS Complications Get?

I have had SS since I was in my late 20's and I turn 58 in April. I was on plaguenil around 10 years until a freind in my arthritis group came down with a rash from taking it. The doctors never got rid of the rash that almost covered her body and when she died she still had it. My RH. gave me a sheet with all the side effects of the drug and I had to decide whether or not to take plaquenil. It has so many side effects that I feel it isn't worth the risk.You need a field vision and full eye exam twice a year the rest of your life if u take it not to mention the fact 20 years after u go off it u can still get side effects from taking it. I was in 3 trial studies until the last one dried up my bottom tear ducts and they had to put plugs in the top ones to try and the upper tear ducts open. I tried Restasis but it burned my eyes so bad I couldn't use it, even tried putting it in the refrigerator so it would be cold going in my eyes but that didn't work either. I use Bion Tears and put Refresh PM in just the corners of my eyes when I go to bed. I still get the stringy stuff out of them and they hurt most of the time. I keep water with me all the time. But that doesn't help much either. Can't eat anything hard without water. I have trouble swallowing food without drinking. I make my own lotion and hand cream because what I make helps my dry skin better then anything I have tried. (which is just about everything). I also have RA but have much more trouble from sjogrens'. It has aleady effected my diegestive system. I don't have sex because it hurts to bad. I also have brain fog. I hope this didn't depress u but after years of living with SS this I know that for me u just take one day at a time and hope it doesn't hit a vital organ like your heart because it does't get any better. I hope they one day find a cure beacause I don't think people realize what u go through with SS.

 
Old 03-15-2010, 09:15 AM   #15
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surreygal HB User
Re: How Bad Can SS Complications Get?

Hi There:
I'm sorry to hear you're having such a rough go of it. I don't know if you live in the U.S. or perhaps Canada (I live on the West Coast of Canada), but there is an annual conference of the Sjogren's Syndrome Foundation in Burlingame (on the outskirts of San Fransisco, near the airport) April 9, 10/10. You can look up all the conference details on their website. They have fantastic guest speakers coming in covering many different problems caused by SS. I'm going to attend. (The conference also includes lunch and dinner, so it looks like it is actually a pretty good deal.) I have CNS involved SS. Two of the guest speakers, Dr. Ann Parkes and Dr. Elaine Alexander, have done extensive research and written many articles about CNS involved SS, and Dr. Alexander has even done work in SS caused seizures, which I have begun having. (I'm now on Lamictal, an anti-seizure medication and because I suffered a grand mal seizure at the end of January, I'm not legally permitted to drive until at least the end of June as Canadian law requires that I be 6 months seizure free.)
If anyone is going to the conference, I'd love to hook up with you. Take care and I wish you well.

 
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