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PSS & Sjogren's


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#21 betty32506

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Posted 12 October 2008 - 08:39 AM

Several days ago I posted about my mouth problems asking if that could be because of the sclero. Several answered and said it could. In addition to the sores my upper lip became so that it showed up when I open my mouth or smile. That gave me some confidence.

My first questions were for the dentist. Since the sores never ulcerated he didn't know but said he would look into it and call me. He did call but still didn't know. Then I went to the rheumatologist hoping that would go well. It didn't. She said what I said "didn't make sense". But she gave me a script for Exfoc and dismissed the subject and sent me on my way to get more labs done. 3 weeks later we discussed the labs and said I was in good shape. I have been thinking of making a new post but it sounds applicable to this topic. Any information, what you were told, suggestions or any such would be appreciated.

This is basically what I told the rheumatologist. Blisters under my lip, the lips from the outside were very sore to the slightest pressure and my gums are such that I can't properly clean my teeth. I had even bought a toothbrush for infants and toothpaste that was bubblegum taste. Just about everything burns my mouth. Then I started using baking soda but still can't allow the brush to meet the gums. I feel like I bite my tongue at the very root. It really hurts from there for an area about the size of my hand extending from the tongue root to my ear. Looking at an endocrine charts it looks just like the area of parotoid glands. I am tired of eating cottage cheese! She had given me Plaquenil about 6 months prior with instructions to have the eye doctor watch it. I was seeing the eye doctor every couple months for other problems. After about 3 months he sent me to a retina specialist for an opinion. That doctor told me to not use it as my eyes were already compromised. So I stopped taking it. That didn't set well with the rheumatologist and me adding that the Evox was not helping made it worse.

I routinely see a pulmonary doctor. He has been more helpful than all the others. He was the one that did the first autoimmune tests and that uncovered several problems. This week I showed him all my labs that I had. He disagreed that my labs showed me in good shape. He said he saw infection in my mouth and a dentist should see that and would be the one to handle that aspect. I have medical insurance but not dental so what's the use in seeing a dentist that has already told me he didn't know about it. And don't know of another dentist that would be better. I see my general practitioner Tuesday and will ask him about an EENT and any other suggestions this post replies.

Thanks
Betty

"I've been getting sores in the corners of my mouth, and that is symptomatic."

#22 betty32506

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Posted 12 October 2008 - 08:46 AM

Soaring Eagle
For a long time I have had dry eyes and at times my mouth would be so dry I could not talk without a drink. For the most part I felt it was medication or alergies and I never had a doctor check it out for anything else.

I found nightime tears that come in a small tube to be helpful. It is thick like vasolene so it blurs the vision but works well at night. Also use tears in the daytime. Currently I am not bothered too much.

#23 betty32506

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Posted 13 October 2008 - 08:21 AM

That was a computer error. The med was Evoxac.


"But she gave me a script for Exfoc and dismissed the subject" :huh:

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Posted 16 October 2008 - 12:01 AM

Hi, Betty (and everyone),

I've had a busy week and this is my first chance to log in this week. Thanks for the suggestions, Betty, for managing the dry eyes. I saw an ENT Tuesday and he concurred with my GI doctor's hypothesis that I have Sjogren's. He scoped me and found crusty patches around the cricoid cartilage and said that was a typical finding in Sjogren's. He also said he wanted me to talk to my rheumatologist, which I will do Wednesday, about whether he thought it would be a good idea to do a lip biopsy. I called my brother, who is a physician, and he explained to me that when you have a diagnosed connective tissue disease and develop Sjogren's (by the way, he agrees with my GI doctor, too), it's called Secondary Sjogren's and rarely needs to be confirmed with a lip biopsy. SO, my question to everyone is, "Did you have a lip biopsy to confirm the diagnosis of Sjogren's?

Hope everyone is having a good week!

Soaring Eagle

#25 mando621

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Posted 16 October 2008 - 01:29 AM

Because I suspected SJogren's first, I was told I had to have a lip biopsy. Didn't sound fun, so I did some reading. There are some support groups like this one out there for people with Sjogrens. They said that the lip biopsy is very painful for many, and there is a slight chance that the oral surgeon doesn't get an actual salivary gland when they do it. I have refused to go through the biopsy, because they don't really plan on doing much to help me with things even if they do diagnose the problem.

With Sjogren's there is a higher risk of organ involvement and lymphoma, so a person should be checked for things regularly. What my Rheumatologist said "it is just an inconvenience" and to suck on hard candy. He didn't seem to think I needed to do anything but moisturize my eyes and mouth. No mention of swallowing issues, organ involvement, loss of teeth from sucking on hard candy! (and dryness anywhere you produce moisture of any kind)

It is another "not well known" condition that doesn't get the correct action from doctors in my opinion.

My eyes are so dry, even with Restasis twice a day, I can hardly read by the end of the day. I can't use many over the counter drops because they irritate my eyes. The kind with the cellulose actually build up crud on my eye lashes that falls into my eyes and makes everything worse. I might be allergic to poly-vinyl which is an ingredient in some eye drops. I have ear plugs made from poly-vinyl that make my ears red and itchy.

I am getting some corneal pitting, but so far it isn't bad enough to make a major difference. I really hope I won't need a cornea transplant someday.

When I'm outside for a long time, I try to wear my sunglasses which are the kind that go over my regular glasses and fit up against my head. It really helps cut down on the drying of the wind. I was glad to find some that work, because swimming goggles (which come to mind) don't really look all that stylish, and my teenage children would probably disown me rather than go with me anywhere.

At a recent local meeting, which I was attending for the first time, someone mentioned that more people actually have Sjogren's than MS. Actually that makes sense. Anyone with RA or other immunilogical issues can get Sjogren's as you mentioned as a secondary issue.

I've done more research on this topic than is probably healthy. Lots of luck getting a diagnosis. Even the specialist I saw said that blood markers only show up in 60-70% of people with the disorder, so if you want a definite diagnosis in the USA then you have to submit to the lip biopsy. The USA criteria for diagnosis is much more restrictive than the European criteria.

Best wishes.
Mando.

#26 CraigR

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Posted 16 October 2008 - 09:34 AM

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

#27 Peggy

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Posted 16 October 2008 - 01:11 PM

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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Posted 16 October 2008 - 05:02 PM

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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Posted 16 October 2008 - 05:05 PM

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

#30 CraigR

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Posted 17 October 2008 - 12:31 PM

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

#31 Peggy

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Posted 17 October 2008 - 04:51 PM

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

#32 mando621

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Posted 21 October 2008 - 02:27 AM

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.

#33 CraigR

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Posted 21 October 2008 - 11:14 AM

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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Posted 21 October 2008 - 02:56 PM

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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Posted 21 October 2008 - 03:04 PM

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!

#36 mutsy67

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Posted 22 October 2008 - 12:08 PM

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
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#37 mando621

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Posted 22 October 2008 - 01:18 PM

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.

#38 mutsy67

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Posted 22 October 2008 - 02:42 PM

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)
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#39 nan

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Posted 23 October 2008 - 03:36 AM

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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Posted 24 October 2008 - 02:34 AM

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!!