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Anyone with Sjogren's ?


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#1 Monica38

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Posted 23 April 2009 - 09:07 AM

Hi there...
Guys, would you mind if I jump in? I really have no one to talk about it...
What do you guys think?


I'm trying to make my doctors help me find out all that is wrong with me besides generalized morphea. I saw my dermatologist last month, and asked him if I had SS. He saw no evidence but he ordered the ANA test which came back negative. He said, in any case if my morphea continue spreading he would like to put me on methotrexate.

I came from the ophtalmologist, and I think I have Sjogren's...grrrrrr.

In the past 2 years I was diagnosed with seasonal allergies and a little bronchitis. All year around I'm always clearing my throat and sometimes I cough. For over a month now, I've got really dry eyes and I couldn't wear my contacts. So I went to my internist right away and addressed my concerns of morphea and SS asked if she could do a more complete blood work etc. After 3 vials of blood, everything came back normal except for the high cholesterol. So, I went to the opthalmologist with all my blood tests, he did the Schirmer test, to check tear production and he said I should get tested for Sjogren's.

The next tests I'm scheduled is for a Lung function test on next Wednesday and they will schedule for LUNG CT Scan next month.

But I guess I'd better find a rheumatologist quickly and who knows, how many more tests I will have to get done. I feel a little down in the dumps.

Oh well, sorry for the long email. It is frustrating sometimes.

Monica
Monica In PA
generalized morphea /probably + Sjogren's

#2 Jeannie McClelland

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Posted 23 April 2009 - 11:11 AM

Hi Monica,

I'm really sorry your morphea appears to be spreading. It sounds like your doctor is keeping an eye on it though, which is always a good thing. I don't know anything about the use of methotrexate (MTX) for treating morphea - if anyone else does, would they please jump in?

When you talk about SS, do you mean Sjögren's syndrome? I have sicca syndrome, also known as Sjögren's syndrome. I test positive for ANA, negative for Anti-SS-A and anti-SS-B, which are associated with Sjögren's. Having a really reliable, definitive blood test for most of the autoimmune diseases would gladden all the doctors who deal with us! :rolleyes: Have you looked at our pages on Sjögren's?

Of course I'm not a doctor and sometimes I have trouble finding my way around a medical dictionary, but with the hoarseness and cough, I'd say checking out your lungs is warranted. And if it were me and they found some internal involvement consistent with systemic scleroderma, I'd want to find a good rheumatologist who specializes in it. (My rheumatologist co-ordinates my care with the other specialists I see.)

I do have to strongly disagree with you on one point! You do have someone to talk to about it - us! Lots of someones and every one sympathetic and, best of all, understanding!

Let us know how the lung tests go, OK?

Hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#3 Monica38

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Posted 23 April 2009 - 11:55 AM

HI,

Well, as I have morphea for a few years now, I'm always afraid of it turning into systemic scleroderma.

I realized that I may have the Sjogren's, at least my ophthalmologist did the Schirmer's test. So I don't know. I wonder if others with morphea here have Sjogren's?

So Jeannie, you have Sicca...did they ever did the lip biopsy? And for how long have you had that, and do you take any medications for controlling that?

Monica
Monica In PA
generalized morphea /probably + Sjogren's

#4 nan

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Posted 23 April 2009 - 12:56 PM

Monica,

I am sorry you are feeling so low. I hope that you will be able to get some answers soon. I too have Sjogren's. I tested positive for Sjogren's and my ANA was positive. But one time when I was tested everything was normal. Don't count on the bloodwork alone. I know that my doctor at Hopkins diagnosis me by looking at me and hearing my symptoms. She said she didn't care what the bloodwork said. Unfortunately I find that most doctors want the bloodwork to prove it. I had the eye test and it was positive, but when I had the lip biopsy it was negative.

Best of luck,
Nan

#5 Shelley Ensz

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Posted 23 April 2009 - 01:18 PM

Hi Monica,

There seems to be a rather widespread belief (among patients, not doctors; you are not the first to mention this concern by a long shot) that morphea can progress into systemic scleroderma. However studies have shown that people with morphea develop systemic scleroderma only about 0 to 4% of the time (depending on the study). So there is about 96% odds you would never "progress". Even though that is very good, it is still a higher risk than that of people in the general population, but not near as high as the risk for more common things like heart disease and cancer.

However, about 25% of morphea patients develop one or two symptoms outside of "just" the skin involvement sooner or later. Plus, they are just as susceptible, perhaps a bit more, to developing any other autoimmune disease or perhaps just a symptom or two thereof. See Morphea Complications.

While you're going through all this testing, why not have a complete allergy panel done as well? It can't hurt and since it is springtime they might play a big or small factor in some of your symptoms. I also have Sjogren's (among many other things) but I experienced severe mouth dryness and parotid gland problems a few years before I had any dry eye problems.

I send extra warm hugs for you while you are going through all the testing and uncertainty and hope you find some respite for your symptoms.
Warm Hugs,

Shelley Ensz
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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.

#6 Jeannie McClelland

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Posted 23 April 2009 - 01:31 PM

Hi Monica,

No, my doctor didn't feel the lip biopsy was necessary and I didn't insist. :)

I went from dry nose to severe dry mouth to dry eyes and yesterday the ENT doctor I saw confirmed the parotid and sub-mandibular glands were involved. I don't take any prescription medications but I do have several different types of eye drops that I use depending on how much my eyes are bothering me and a toothpaste/mouthwash/mouth 'wetter' that my dentist recommended. I've also got horribly dry skin. I keep myself well hydrated, use the products that were recommended, and tell myself if it doesn't get any worse than this (I live in a really dry and windy climate), it ain't all that bad.

Warm hugs!
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#7 Peggy

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Posted 23 April 2009 - 01:46 PM

Welcome to the board. You will find this site a wealth of information and a great place to go to for support, to ask questions, and to vent. I have systemic sclero, Raynaud's, peripheral neuropathy, polymyositis and Sjogren's. My Sjogren's was diagnosed the rheumatologist before the sclero was. She identified before the test on my lip came back positive. I battle with severe dry mouth and dry eyes. I chew sugarless gum almost 24/7 and that helps a lot. I use the special toothpaste and also use the magic mouthwash that she prescribed. From what I read about Sjogren's is that it can really raise havoc with us and my rheumatologist seems to be more concerned about the lymphoma that can present with the Sjogren's than she does with sclero. I hope that this is the only ailment you do have to deal with in all of this.

Please keep us updated on how you are doing.

Warm hugs,

Peggy

#8 Monica38

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Posted 23 April 2009 - 06:23 PM

OH, my doctor did a blood allergy test.
It didn't detect any allergies. I forgot to say, the ophtalmologist put a silicone plug in my tearducts to see how it goes.. It will dissolve in 2 weeks.

Today I got an appointment with a rheumatologist, only could get for end of June. This time I had a hard time to get the appointment. Maybe these doctors are in high demand or what.

My closest appointments now are with my dermatologist and internist, So basically I'm working with these two for now, and I want to see if I can get the most out of these appointments, so when I go to the rheumatologist I will have more information.

I wonder if now that I was diagnosis with this Sjogren's, what is the progression of this thing, besides the dryness issue? I wonder what tests the rheumatologist will do? Do they check GI? heart, renal function, or not? I'm worried thinking about how I'm going to monitor my health, wondering what else I may have, and what should I keep an eye on, and when to run to a doctor...

What type of checkups do you guys get and what's the frequency?
And do you guys take any immunosupressant? Antidepressants or something to help sleep?

Sorry for so many questions. I hope I'm not being silly asking all these things. But after I read all about these things, it is so much information, overlapping conditions, this and that, that it all confuses me in the end.

Monica :) :) :)
Monica In PA
generalized morphea /probably + Sjogren's

#9 Peggy

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Posted 24 April 2009 - 10:02 AM

When you are dealing with a rheumatologist who is an expert in scleroderma and related diseases they are adamant on doing screening of your heart, lungs, kidneys, blood work, and espohagus issues. I see my rheumatologist every 3 months and there is always a different battery of tests at each appointment. Normally you have other doctors involved that specialize in those areas so along with my lead doctor who is the rheumatologist I have a pulmonologist (lung doctor) who does all the lung work-up; a cardiologist (heart doctor) who does all of the heart monitoring; an oncologist (cancer doctor) due to having a protein marker that indicates I will have lymphoma at some time so he sees me every 6 months to test for it; a gastroenterologist (esophagus) who takes care of my GERD issues; and my local general practitioner that's right here in town and sees me for normal things. I have to drive 3 1/2 hours for my appointmens other than my local doctor so when I go every 3 months, it's quite a day as all of the testing is scheduled througout the day.

It's just so imperative that all of these things are watched very closely with this disease as scleroderma can change things so quickly. With the Sjögren's I haven't had anything else develop other than the dryness issues and trying to stay hydrated.

Warm hugs,

Peggy

#10 CraigR

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Posted 28 April 2009 - 09:57 AM

A good rheumatologist - familiar with scleroderma, should get you a blood work up of autoantibodies. These can help a great deal with diagnosis of various autoimmune diseases.

There are specific autoantibodies for Sjogren's that can show up in these tests. However, there is always the chance that you may get a false negative. That makes it wise to get routine testing if you are at risk. I've been tested many times. I'm almost always positive for Sjogren's (and have obvious symptoms), but there has been the occasional negative.

Good luck,

Craig