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Guest Soaring Eagle

PSS & Sjogren's

54 posts in this topic

I was diagnosed with Sjogren's without a lip biopsy.

 

First there was the Schimmer (sp?) test. This is when a tiny piece of paper is hooked in the eye, just under the lower lid. After a set time, it is removed and examined to see how far the eye fluid has soaked into the paper. A very small amount is highly suggestive of Sjogren's.

 

But more specifically, the blood tests for specific antibodies will tell if you have Sjogren's autoantibodies. More than one test is a good idea, since it can be in error.

 

Craig

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I had the lip biopsy and it really wasn't any big deal. It did come back positive for Sjogren's. I remember when my rheumatologist doctor asked if I had Sjogren's and I had no idea what it was. She asked if I was dry and I said yes but that I didn't drink enough water. Then she examined me and she was amazed at just how dry I was and that I my Sjogren's was really bad. Like I said, until all of this started I never even knew what it was, just like the scleroderma or the raynaud's. Now I have 6 different autoimmune diseases and am considred an autoimmune disaster.

 

Warm hugs,

 

Peggy

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Mando, Sounds like you have done a lot of reading and learning through other channels. Thanks for sharing your experiences and what you have learned. Today started out not too bad once I got up and drank some gatorade, but then went downhill. I teach two 2-hr classes on Thursdays. The first class I showed a video and discussed it briefly, then let them go. The 2nd class met for about an hour. SO FRUSTRATING!! It sounds like a lot of you are taking Evoxac. What is the purpose of the Evoxac?

 

Soaring Eagle

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Craig & Peggy - How long after being diagnosed with Scleroderma were you diagnosed with the Sjogren's?

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I developed substantial Sjogren's about 20 years after my first scleroderma (CREST) symptoms.

 

Evoxac is a cholinergic agonist which is supposed to increase the flow from salivary glands, tear ducts etc. I take it, though it seems to have very little effect. Some people report great relief from dryness. There is a similar, older drug called "Salagen" which is said to have less effect.

 

Craig

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I was diagnosed with both sclero and sjogren's at about the same time. Everything that was going on was finally put together and I had the diagnosis of peripheral neuropathy, sclero, sjogren's, raynaud's. I had always had the thyroid problem and polymyositis was diagnosed this June. I unfortunately have 6 different auto-immunes going on............such fun...............

 

Warm hugs,

 

Peggy

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Diagnosis of Sjogren's requires either the lip biopsy or definite antibody involvement. The only thing about the antibodies, only 60-70% of people with Sjogren's show the blood markers. That leaves out a huge number of people who then have to have the lip biopsy to make definite diagnosis. The last rheumatologist even said that the antibodies aren't always present and gave me the same percentages. The first rheumatologist I mentioned that to, asked me if I was studying medicine.

 

I saw the Internal medicine doctor specializing in GI and he wants me to go through the speech pathologist to do a swallow study. He agreed with me that there is something going on. He didn't go through all my past test results or any of the records, but he watched me talking and said that my upper lip and face look stiff when I talk.

 

I find that I'm pronouncing things differently than I used to, and this semester my students said to me that I say things funny.

 

I'm not sure whether or not I'm going to get an actual diagnosis from this doctor, but so far, he is the first person to say that "yes something is definitely going on here" and he agreed that the antibodies don't always show up. That is a change from all the other rheumatologists I've seen who feel that the antibody tests are the golden ticket.

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I mentioned that there should be more than one antibody test because I have had times when Sjogren's antibodies did not show - but usually they do. Lab tests often give false negatives or positives.

 

Nevertheless, since the symptoms are so intense for me (mouth dry as the desert if I even go for a small walk; impossible to eat dry crackers without water), it's obvious. Sort of like having a creature in the living room that is shaped like a horse, but has black and white stripes. You might want to do further tests, but I'd be quite sure that it's a zebra...

 

Craig

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Mando - I'm having difficulty getting through a 50-minute class right now. I teach 2 100 minute classes on Thursdays - that will definitely be a challenge! Today I feel like my eyes, mouth, and throat are full of sand - dry and gritty, and very annoying. I see the rheumatologist in the morning to get my IV Boniva, extra fluids (still getting dehydrated), and discuss the Sjogren's theory. Hopefully he'll have some answers and suggestions for me,

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Craig - I love your analogy re the zebra! I may use it when I see the rheumatologist tomorrow. Today has been the worst day yet with regard to not being able to shake the horrible feeling in my throat and mouth (and eyes). Maybe by this time tomorrow I'll have some answers and be ready to move from the "Could it be..." hypothetical stage to "Yep, that's what it is and here is how to get some relief" stage. I'm a speech pathologist (SLP) and I was talking to one of my colleagues who specializes in voice disorders. She e-mailed an SLP who works with cancer patients who said the way I am describing how I feel is exactly how patients receiving radiation treatments describe their throat and mouth. She is going to e-mail me some "soothing" tactics she suggests to her patients - hopefully some of them, combined with the advice on this website, will provide some relief!

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Hi All,

This summer my bloodwork came back 'maybe' for Sjogren's and definate for diffuse scleroderma, but until last week I didn't have a doctor who thought the Sjogren's was 'real' or necessary to treat. My new rheumatologist changed my diagnosis from diffuse scleroderma to Mixed Connective Tissue Disease (MCTD) along with Sjogren's, cREST, Hashimoto's (thyroid) and small fiber neuropathy. I went from fighting to get a diagnosis to having too many to remember - haha!

 

Anyway - she has me using eye drops, eye gel (at night), Biotene (mouth wash and gum) and taking pilocarpine (a medication for dry mouth). Five days later I am AMAZED at the number of symptoms I had that I didn't even know. As they recede it is like a piece of my life is coming back to me. I highly recommend the pilocarpene - it is amazing. I take it 4x a day and I can tell the difference about 30 minutes after I take it - I actually have saliva to swallow. Amazing stuff.

 

My voice is no longer hoarse or warbly at the end of the day either. I slept with gum or a throat lozenge in my mouth almost every night since about 1997 - and haven't had to do that since I started on this stuff.

 

Oh - and I didn't have the lip biopsy.

 

Good day,

Shari


Shari (AKA Mutsy)

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Shari - Mutsy,

 

How long did you have symptoms before getting blood tests showing Sjogren's? I've had symptoms coming on for almost 10 years. So far, the only medications I'm taking are Restasis eye drops which help some, but not enough. I also use prescription strength floride toothpaste. I'm going to ask about the pilocarpine. I don't like taking lots of medication, do you get any bad side effects? Sometimes it seems like medication can bring on as many problems as it is designed to help.

 

Even if I don't have a diagnosis, it would be nice to have someone treat my symptoms seriously. I've been going on for so long with constant pain, I am starting to go through a time where I just can't take it any more.

 

Mando.

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Hey Mando,

hey, yep I know what you mean. I've been so focused on the loss of hand function the past five years that I totally didn't comprehend all the mouth, eye, throat issues that I have. this summer has been an eye opener.

 

I had blood work in June and it showed positive for SSA and equivocal for SSB - so kind of 'positive' for Sjogren's - my current rheumatologist (you may have seen from my previous posts the issues I've had with getting a new rheumatologist) was willing to take that blood work but one of the rheumatologist's that I saw this summer dismissed it completely while the other put me on an oral steroid and retested after six weeks - the SSA and SSB were both then negative and he declared me 'cured' - LOL!!

 

When I went to the new rheumatologist last week I gave her both sets of blood work and the script history and she said "well, I have no problem diagnosing Sjogren's and starting you on treatment" - huh? I swear I wish there was some consistency between doctors but I do realize that autoimmune is very difficult so finding a good doctor is hard - but seriously they're all over the board!

 

Anyway - the Priolocarpene (sp?) has worked wonders and it was prescribed for 4x/day but so far I've not been able to get more then 3/day in - she warned me about increased sweating and things as it gets into your body - but I live in the desert (AZ) and still don't sweat and sure enough - not a problem. Have had a headache though but it seems to be getting better. all in all well worth it.

 

Good luck and keep me posted!

Shari (aka Mutsy)


Shari (AKA Mutsy)

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Soaring Eagle,

I was diagnosed with Sjogren's in 1998 due to bloodwork and eye tearing test. In 2006 more bloodwork was done and it didn't show that I had Sjogren's. I had a lip biopsy done in 2006 and that was negative. Also in 2006 I finally went to Hopkins and the doctor there said she didn't care what the tests showed, I had Sjogren's. I was also diagnosed at that time with CREST or Limited scleroderma. This past June my bloodwork was definitely positive for Sjogren's. And guess what I am trying to say is, if I had to do it over again I wouldn't have done the lip biopsy. It's not that bad, but it's stressful to watch them cut open your lip.

Good Luck!

Nan

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Good Morning, Everyone!

 

it's helpful to hear everyone's experiences with the blood work and lip biopsies. When I went to my rheumatologist Wednesday he drew a lot of blood - wasn't sure I would have any left!!! He said that it has to go to a lab in California (which is also where my former rheumatologist -now retired - sent my initial bloodwork that came back positive for Syst. Sclerosis/MCTD). I go back to get the results in 2 weeks. I told him I had discussed all this with my brother who said that the blood tests and lip biopsy are often negative in cases of secondary Sjogren's. Dr. L concurred with that, but said he is doing the bloodwork for 2 reasons: 1) if it comes back positive, I don't have to have the lip biopsy and 2) he wants to know if it is primary or secondary. He, like some of your doctors, agreed that the symptoms warrant the diagnosis. Based on what many of you are saying I'm having serious reservations about going through with the lip biopsy.

 

At this point, I can eat yogurt (breakfast), ice cream (lunch) and about 1/2 a medium sized baked potato (supper) without irritating my throat. Last night my mom was in town and wanted to go to a local family-owned Italian restaurant that she likes. I ate about 1/3 of a serving of lasagna, and today my throat is burning and irritated again. Oh well!!

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My dentist and GI doctor are 99% sure I have the Sjogren's. My GI doctor said it is the only diagnosis that makes sense - the symptoms I have don't fit anything else but they all meet the symptoms of Sjogren's. I haven't gotten the bloodwork back yet, but I understand that it is often negative in secondary Sjogren's.

 

I've looked on Sjogren's web sites and can't find an answer to my current question. My mouth/tongue/throat have been sore for 4 weeks. I have repeated bouts with thrush. My eyes and mouth are constantly dry. My hairdresser said my hair seems dryer, and I know my skin is dryer. I'm living off ice cream and yogurt - they're about the only things that don't make my mouth and throat feel worse. I have a chronic hoarse voice despite constant sipping and using Oasis Mouth Spray. Tonight out of sheer frustration I started crying and I had tears. That made me wonder: If you have all the symptoms of Sjogren's, given that dry eyes and dry mouth are considered to be "hallmark" symptoms, do you have tears when you cry if you have Sjogren's?!

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Hi Soaring Eagle,

 

On some of the Sjogren's sites they talk about tear production. From what I understand, your tear ducts aren't producing maintenance moisture, which lubricate the eyes. This doesn't seem to be related to the tears produced when you cry, they actually have a different chemistry. Tears produced when you cry are heavy in salt, you can taste it. Moisture for the eye doesn't have that much salt. Crying tears are actually drying to the eye, I know from experience, but sometimes I almost try to "tear-up" because I get a brief respite from the dry conditions.

 

My Schmirer test showed less than 4mm of moisture in one eye and they virtually had to peel the paper off my eyeball after 5 minutes. But I still cry tears, just not as many as in years past. I also notice that the eye that is dryer produces less crying tears than the other eye.

 

Has your doctor said that they would consider any kind of treatment for Sjogren's? Or are they going to monitor you on a regular basis? Mine seem to think that it is no big deal, just live with the symptoms by supplementing moisture. I found an interesting online resource last night about Sjogrens and dry mouth. I didn't make note of the web address, but it was some type of online textbook. The author made note that dry mouth is not actually a normal aging process, and dry mouth should be evaluated. Older people often get dry mouth because of the medications they are taking, so people assume it is a normal aging process.

 

Take care.

 

Mando.

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Mando, Thanks so much for replying and answering my question! My doctors are waiting on the blood work before deciding on a treatment protocol; they're pretty aggressive, typically. They did mention that two meds that are sometimes used are medrol (steroid) and plaquenil. I am already on those for the MCTD/systemic sclerosis. They did talk to me about the palliative measures such as eye drops, nasal saline, and oral lubricants. The dentist has also been very helpful. He ordered a toothpaste that helps people with Sjogren's; his office manager called me this afternoon and said it is in, so I will pick it up in the morning. He also contacted another one of his patients who has Sjogren's and asked her if he could give me her name and phone number. I will call her tomorrow. I also went to our local library and checked out some books, but they are all pretty dated in terms of the publication date (newest one was around 1997) so I am not sure how much help they are. As far as the basics being in agreement with what my doctors and dentist have said, they are on target, and they have helped me formulate questions for my doctors. My main concern right now is the hoarseness. After my first class this morning, I had not voice left, even though I did complete voice rest all day yesterday in order to conserve my voice for today. It gave out by 10:00am, and I still had another 2 hour class and afternoon clinic to go. Do you have a hoarse voice? If so, how do you manage it?

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Soaring Eagle,

 

Teaching with this problem gives us so many more issues. I talk all day teaching. I also stand virtually all day. Luckily I'm physically okay with standing, but erasing the board gets hard on my arms. They get fatigued so bad that by the end of the day I feel like I'm lifting lead.

 

The talking part has been okay as long as I had water at hand. I'm sipping water all day long to keep my mouth moist and to cut the burning in my mouth. I've just started getting horse and I think my throat is also getting sore because I'm not swallowing very well. It is especially bad in the afternoon after I've eaten lunch. In the morning my voice is froggy, but it clears up pretty good after a couple of hours, just in time for morning class. The 1:10 is awful because I feel like I still have stuff in my throat. One day I could definitely tell that I was trying to talk through a chunk of apple.

 

Swallowing and throat issues come with both Sjogren's and Scleroderma. I'm not officially diagnosed with either, but I've been told I have all the symptoms of Sjogren's without the blood markers. I also have slightly elevated ANA, but all other antibodies are negative at this time. Yet I still have symptoms of Scleroderma and the last rheumatologist said I had some sclero-like problems. For me the Sjogren's symptoms came first. Then I started with Raynaud's, and now I notice slight facial changes. I can tell my throat is getting worse, I guess I'm lucky that it seems to be progressing at a fairly slow rate.

 

I wouldn't be able to teach with gum in my mouth, it is hard enough to talk without trying to talk through something. My gag reflex is very strong and I can't keep something in my mouth for very long. I sometimes suck on a piece of candy before class, but that can backfire and make it harder to swallow.

 

If you would like to actually talk sometime, we could meet in the chat room. I can't talk to my colleagues about my problems. Teaching can be lonely in the college level because we don't have any common office hours.

 

Keep up your spirits. I hope you are getting support from your students.

 

Best wishes.

 

Mando.

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Hi, Mando!

 

I would like to meet in a chat room, but I can't remember how to do this. I've been so busy at work, and by the time I get home all I do is go to bed, so I haven't checked this website in a couple of weeks. My GI doctor stopped my nausea meds and the meds to make my stomach empty because they could produce some of the same symptoms associated with Sjogren's. However, it did not alter the symptoms, the nausea became overwhelming (I call it "curl-up-and-die-nausea"), so I restarted those meds Saturday night. I met with my GI doctor Monday and he confirmed the diagnosis of Sjogren's secondary to systemic sclerosis. He started me on Evoxac which, ironically, is also a cholinergic agonist that not only treats the symptoms of Sjogren's, but also facilitates gastric emptying. Tonight I ate 1/2 a hamburger patty with cheese on top, and 8 french fries. my mouth still hurts, but no nausea!!! It's the first time I've been able to eat in 2 weeks without resultant nausea! I also started swishing with Dexamethasone at the suggestion of my dentist. Hopefully it will help reduce some of the oral discomfort.

 

I also saw my rheumatologist yesterday (it's "doctor-week"). My blood work was negative for primary Sjogren's, but he said that based on symptoms, history, and the ENT's finding of crustiness around the cricoid cartilage, he agrees with the GI doctor's diagnosis. SO, the rheumatologist, the dentist, the GI doctor, and the ENT all concur.

 

My hoarseness is better, but I definitely have vocal fatigue after a class. I'm showing more videos, and giving the students what I call "Think-About-Its" -- a diagnostic, treatment, or ethical scenario (related to speech-language pathology) that they discuss in groups, then bring their responses back to the class. This way, they do most of the talking, and I augment their discussions. I also have a voice amplifier to help project my voice with less effort. It seems to help, too.

 

How are you doing? I'm looking forward to chatting!

 

Soaring Eagle

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Hi, Mando and everyone!

 

How are you doing? Is there a chat room tomorrow night? I can't remember what time it is, but I'm going to find out and hopefully be available since I've been somewhat out of touch. The cholinergic agonist my GI doctor prescribed is working really well. I ate some Thanksgiving dinner with all of my family Thursday although I had some visceral burning after eating that lasted about 12 hours and was pretty uncomfortable. But, after that eased up, all was fine. My daughter and I did our best to stimulate the economy Friday :) , but the absence of a crowd was quite noticeable at the 3 malls we visited in Atlanta. But, with the exception of 2 small gifts, my holiday shopping is done!

 

I hope everyone had a good Thanksgiving. I will say that one good thing about Systemic Sclerosis is that I wasn't tempted to overeat! :rolleyes:

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Hi, Mando!

 

I hope you (and everyone else) has had a pleasant, happy, peaceful holiday season. I'm gearing up for returning to work after 2 weeks "off". Mando, you mentioned meeting in a chat room. Are you still interested? Both of us being college profs, it would be nice to swap strategies! Do any other teachers have strategies for making it through the day? :blink:

 

Soaring Eagle

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Hi Soaring Eagle,

 

Did you figure out how to attend a scheduled chat, or to have a private chat? Both Carrie and Sheryl are great at providing more tips on that, if you need them. You will see their links in the right hand column under "Sclero Chats".


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I haven't taken the time to figure it out! But, I will certainly follow-through on those contacts if I run into a blockade due to my computer ineptness!!! Thanks!

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Soaring Eagle I have just seen this thread and I have also got Sjogren's which affects my eyes, nose & mouth. I didn't know that recurring thrush is a symptom as well, something which I never seem to get rid of properly. I use a saline spray for my nose along with drops for my eyes. I use gum as well to ease the dry mouth and drink lots of water.

I was a teacher until I got Ill Health retirement this last summer and I used to find it so hard while trying to teach because my mouth used to seem as if it was glued together, I did keep a bottle of water to hand but it never helped that much.

 

Take care & Have a Happy New Year.

 

Jensue

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