Sjogren's question

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lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/22/2009 11:13 AM (GMT -7)   
 Hi all - I know lots of you have Sjogren's.  My rheumie suspects I do as well, but again, the bloodwork doesn't come up positive for it.  I have dry eyes, mouth, skin, etc.  I also notice what looks like swelling/puffienss in the cheekbone/jaw area.  It is more pronounced sometimes than others, particularly during mild flare periods.  I seem to have adbominal bloating then as well - so maybe it's just fluid in general.  My question is - do those with Sjogren's experience this as a vague ongoing thing?  Does it go back down?  I know that the parotid glands can swell significantly making you look like you have mumps or something. (This is not that bad)  But what about just a "fat face"?  One side appears slightly larger than the other.  I don't have swollen glands under the jaw - though they are a bit tender.  Just wondering what you all  have experienced.  Thanks 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/22/2009 6:43 PM (GMT -7)   
Lucy, I have Sjogrens but only have dry mouth right now. I have no advise to offer you but I am sure others will be along soon! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/22/2009 10:09 PM (GMT -7)   
I have sjogrens I have dry eyes and mouth I have to keep my mouth moist alot of water. I also use eye drops. My glands do hurt and times but I'm not sure why, when the docs check them they are not swollen but sometimes it does bother me. I wish I could give you an answere. Take Care!!
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/23/2009 7:21 PM (GMT -7)   
Lucy, I have sjogrens and YES my face is always puffy, sometimes more one side than the other. I have had to have the salivary glands and surrounding lymph nodes under my jaw removed, one side in 1998, the other in 2007. My parotid glands are swollen changing the shape of my face and the surrounding lymph nodes swell. My thyroid also swells sometimes along with the whole mess, and glands and nodes have blocked my breathing before, made it difficult to swallow, and now i have one pressing against my jugular vein causing intermittent dizziness and also pressing against my eustacian tube to my ear, causing a plugged up ear feeling. The surgery is quite complex. Sjogrens does increase your potential for cancer, so if your glands are really problematic for a long time, seeing an ENT and getting a CAT scan with contrast is a good idea once in a while if it gets real bad. Antibiotics do help sometimes, sometimes the "flare" is actually an infection due to me being immunosuppressed. Its hard to tell until you get a biopsy.

Good dental care is essential with sjogrens, using mouthwash, I use a crest spin brush which I think really cleans well, and going to the dentist is important. Evoxac or salagen meds that increase the saliva can help with keeping the tartar off your teeth, but I thought they might have a side effect of causing swelling of the glands. Everytime mine are bad, I try going off the evoxac and it never helps though, so in my case, it is actually either sjogrens or an infection.

A good pix is here: http://www.hopkins-arthritis.org/arthritis-info/sjogrens/oralsjogrens.html

I can email you a picture of me before my last surgery, my head and neck were the same size. I really swell bad. I also get skin tags on the neck.

Hope this helps and that you feel better soon. Seeing the Ear nose and throat guy can really help, brushing teeth more and using salt water gargles help too. One time I went in with a really swollen parotid gland and they gave me zithromax for two weeks and an oral dose and immediately after drinking the oral, all my glands just suddenly shrunk. It felt great.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 4/23/2009 11:49 PM (GMT -7)   
Dear Cured4Real,
It sounds like you have been through it! Do you mind if I ask you a few questions? I have Lupus, Sjogren's and fibromyalgia and osteoarthritis. The way I have been swellling lately you'd think that I have rheumatiod arthritis. I just had a whole panel of lab work done and supposedly my sed rate is normal and my RA factor is neg. I've been a bad flare since Dec. I've had a lot of swelling in my hands and legs. My hands feel like they have been run over by a car (new symptom). Most days I have about 2+ pitting edema in my legs and they seem to swell even up to my thighs. My midriff area and stomach seem bloated also and my afternoon I feel like I've eaten a Thanksgiving dinner and I'm so miserable I can't breath or bend over to tie my shoes. Sounds like I'm pregnant but there's no chance off that because those organs were taken out 22 yrs. ago. My glands don't seem to be swollen under my jaw line. I'm soooooooo exhausted that I feel I could stay in bed a week. Of course my legs had no edema in them when I went to the doc last week! I've been doing Lasix 40 mg. twice daily so I feel like I can breath. I have no history of heart trouble and just had a stress test in Dec.
I know that sometimes those of us who have "the weird stuff" have to self diag. because we really have the disease and are in the trenches of the effects of it. I've put on 10 lbs. in the last 3 weeks and have not changed my diet at all and watch the salt intake. Any suggestions you could give me would be greatly appreciated. Thanks!
Valerie
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/24/2009 10:13 PM (GMT -7)   
Valerie, I have some of the same problems. Perhaps they have you on the wrong type of diuretic. One works for liver type edema and one works for a certain type of kidney type edema. Even though I have liver disease, lasix doesnt' fix my edema, though it is the diuretic hands down given to liver patients. I take a "loop" diuretic called HCTZ and it works for me, so there must be a kidney part to my edema. Do you get gastric reflux along with your nausea and belly pressure? The pressing on the diaphragm making it hard to breathe for me happened when my liver was inflamed and large. Also, the pregnant belly can happen from the liver. An abdominal ultrasound is not invasive, its just the baby ultrasound they do when you are pregnant, and it can tell them about your organs and they can see what is enlarged, if you have fluid in your belly they might want to drain, if your liver is alright or causing problems, how your gall bladder is and many other things.

I've been swollen in my left leg bad and it turns out I have nerve damage due to arthritis inmy spine and am getting more surgery. I asked if the nerve not workng could cause the veins not to work. I didn't get a conclusive answer. I also saw a vascular surgeon who did ultrasounds on my legs and determned that the valves in my deep veins are not working to push the blood up out of my legs as well as they should be, and that I have some whole branches of veins that aren't working at all, and he wants to do surgery. Most docs agree I'm too young for this stuff.

Seeing a vascular doc might be a way to track down what is causing the swelling, I want to get the dye injected in the veins to see where the problems are, especially since onekidney is bigger than the other, but I can't get the docs to order it, even though I have positive P-ANCA, which is indicative of kidney and vascular disease.

I don't know if this has been of much help. I think the arthritis in the neck and the swollen salivary gland and cervical lymph nodes and even thyroid problems seem related, to have the same cause, as they all flare up at once an my whole neck is a mess. It comes on like an infection, though steroids help. Oh, on the swollen glands, you need a CAT scan to really tell. If you haven't had one ina while and yur neck is sore, maybe you can get one.

The weight gain can be from liver, I have fatty liver and gain weight easily and just can't lose it as my liver can no longer burn fat, or from thyroid. It's like the whole mess in the neck spreads to the thyroid and the c-spine, causing the arthritis. Ithink that docs investigating disease causes or triggers for autoimmune diseases are really on to something sometimes.

I hope you feel better and that you can get some answers or more tests anyway from your docs. Do you think your hands could be from your neck? Despite my wonderful neck surgeries, my neck is still collapsing and I have a lot of compression of nerves. Also, I got tendonitis from levaquin, an antibiotic, and it really hurt for about a month then went away.

I had to laugh about your legs not being swollen at the docs, that use to happen tome, now they are always swollen, but now the docs just deny that they see any swelling. I hve no ankle bones, duh. They just deny deny so they don't have to deal with it.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Gluten Free Mom
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/16/2009 11:47 PM (GMT -7)   
Wow. I was just browsing the web for info on a "tickle in the throat at night," since I can't get to sleep due to it tonight.

I have not seen this related to sjogrens and other autoimmune diseases before, which freaks me out. My aunt is being worked up for sjogrens, fibromyalgia, and lupus, and my grandfather had severe arthritis.

I am free of the intractable throat tickle when I go on a strict gluten free diet. It is in most grains- wheat etc., and hidden in a lot of processed foods. I was also developing pretty bad joint pain and other miserable symptoms (frequent dry stingy eyes, cystitis, heartburn, fatigue, and more) that disappeared when I stopped eating gluten.

Celiac disease, which is and intolerance to gluten is related to auto immune disorders. I hope that looking into changing your diet to gluten free may help you all. No more cheating for me!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/17/2009 8:57 AM (GMT -7)   
Hi gluten free,

We've have discussions in the past about a gluten free diet and I, for one, believe there can be a real connection between gluten intollerance and autoimmune diseases. I was totally gluten free for a while and felt better. While my blood tests do not indicate celiac disease, I'm sure that there are different levels of gluten intollerance and I believe mine is mild.

Thanks for reminding us of an important topic. Anything we can do to help ourselves is important.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/20/2009 8:20 PM (GMT -7)   
Hi Lucy,

I have "suspected" sjogrens . . . but its really quiet right now except that my eyes are still somewhat dry. But recently I started producing lots more saliva . . . yeah!! Anyway, my rheumy said that you don't necessary test positive on the bloodwork. He just treats the symptoms. Its important to keep that mouth moisture going to protect your teeth. I do get inflammation that cause brief, sudden, sharp ear pain . . . but I've not noticed visible swelling.

Sorry, not much help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/20/2009 10:09 PM (GMT -7)   

Hi Rosie - I have experienced that ear pain as well.  Glad it has been brief!  My swelling is pretty mild in comparison to the pictures on the web, (thanks, Marji,that was helpful).  What do you use to keep your mouth moist overnight?  I bought a spray put out by Xlear, I think it might be called Rain Mist (I find their nasal mist spray really helpful for keeping my sinus infections at bay - like Ocean Spray only better).   I think it may have caused increased tooth sensitivity, though, because of the grapefruit seed extract in it.  Not sure though, as I was eating a lot of fruit and lime sugar cookies around the same time.  Am going to give it another trial, but is there another product, especially for at night anyone could recommend? 

Thanks!

Lucy    


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/21/2009 6:48 PM (GMT -7)   
Lucy,

I took salagen . .. an rx med to help saliva production. I also use Biotene mouthwash after brushing. I put some in a tiny spray bottle and I kept it on the night stand to mist my mouth in the night if I got dry. Sometimes that dryness can choke a gal!! Water doesn't seem to help. I don't miss that at all.

Take good care of your teeth because the dry mouth will take over and you'll lose your teeth if your not careful.

I hope some of the others have some ideas for you too.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/21/2009 8:42 PM (GMT -7)   

Thanks, Rosie.  You are so right about taking care of the teeth!  I did have some tooth loss - years ago, when I had no idea about any of this.  After all the pain and expense, I am now very meticulous with my dental hygiene.  Which doesn't help the dry mouth, though.  It's funny how it can be so bad for awhile and then it will ease off.  Will try the Biotene.  If that isn't enough, will talk to rheumie about the Rx.  The small spray bottle on the nightstand makes all kinds of sense!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/21/2009 9:41 PM (GMT -7)   
lucy--
I take klonopin and I swear it is the only thing holdingme together right now, but like xanax it dries you out. I keep water by the bed because I take it in the evenings, and I take evoxac (new med like salagen) and chew sour sugarfree gum like extra cool watermelon.

Sometimes I just dont drink enough. sometimes gatorade instead of water provides better hydration during my dry spells as my kidneys aren't always making the most of the hydration I do take in.

Being really dry, esp. eyes, is horrible. I got big styes in the sockets from it, big painful styes and pinkeye. It was the worst dry spell ever. Pred helps me.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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