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Sjogren's Syndrome (Secondary)


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#1 Clementine

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Posted 25 November 2008 - 06:29 PM

How many of you all have secondary Sjogren's and how has it effected you?
How do you separate the sclero symptoms from the Sjogren's symptoms?

Thanks,
Clem

#2 Shelley Ensz

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Posted 26 November 2008 - 04:10 AM

Hi Clem,

I'm sorry you have Sjogren's, as well, and send my best wishes to you for dealing with it.

I have secondary Sjogren's. I attribute the dry eyes, dry mouth, parotid gland problems, most of my dental issues, and dry mucous membranes to the Sjogren's. But I have so many overlaps (multiple autoimmune syndrome, MAS) , that from there, it is virtually impossible to distinguish except for items that are clearly assigned to another disease, such as tight skin from scleroderma, scaling rashes from psoriasis, bladder issues from interstitial cystitis, thyroid issues to Hashimoto's, severe muscle pain and aching to fibromyalgia, and so forth.

It took decades for my doctors to even begin to sort it all out, and they are still trying to sort some things out, so why should I be able to on a daily basis? It sort of matters, from a diagnosis standpoint, and then again, it sort of doesn't, from a treatment standpoint, as what matters is the symptoms are addressed, regardless of their root cause. For me, I figure there is just something basically whacked with my immune system, and thus I think that the separation into all sorts of separate disease "names" is very artificial for those of us who have more than one condition. Clearly, in my particular case, gluten and casein food sensitivities are an important factor in triggering widespread autoimmune reactions.

I've been hospitalized several times (over 30 years ago) for severe parotid gland problems. Last year alone, I had over $20,000 in dental work done...and lots more this year, with two new crowns in just the last few months. Some of that is caused by scleroderma having made my mouth smaller and loosened some ligaments; and some due to Sjogren's making my mouth so dry and prone to cavities.

Eye dryness has caused all sorts of havoc with infections...and prevented me from have laser eye surgery which I would really love. And so on and so forth. All of it is manageable and all of it is livable...once we get accustomed to dealing with it, of course. But separating it out, further than chalking up dryness issues to Sjogren's, I think that gets very difficult, if not impossible, for anyone who has Secondary Sjogren's, particularly, along with systemic scleroderma...so I leave those fine lines entirely in the hands of my doctors.
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.

#3 Purr

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Posted 26 November 2008 - 10:55 AM

Oh Shelley! You've certainly had your share and more!!! You have a wonderful attitude.

Christy
Love makes the world go around!

#4 Shelley Ensz

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Posted 27 November 2008 - 03:17 AM

Thank you, Christy.

Clem, one thing I meant to ask before I got derailed in my last message was, what symptoms are you having problems sorting out?
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.

#5 Clementine

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Posted 27 November 2008 - 03:30 AM

Shelley,

Thank you for your post. I am not really even diagnosed with Sjogren's, but my opthamologist did a few tests and said they point to it. The eye symptoms are obvious, really red, dry eyes that burn. At times, the look like they are filled with red liquid. I've had so much dental work the last few years. This year alone, I've replaced 6 molars. A few months ago I was diagnosed with AVN (osteonecrosis) but I have read that Sjogren's causing joint pain. Just wondering if my pain was more of the Sjogren's and maybe the AVN has been there all along. I am just curious how long I have had Sjogren's and how bad it is. I have always had dry eyes and blamed it on high altitude and contacts but since I have moved to a humid area, it's actually gotten worse. Bad enough that I went to the Emergency doctor. the other day.

I am just learning about Sjogren's and am wondering what to expect. I seem to have gotten the nasty version of scleroderma and am hoping I didn't get the nasty version of sjogren's.

I see my rheumatologist in January but when I asked him last year if he thought I could have it (due to my dental issues) he said no.

I have even noticed my glands looked larger than normal, but just thought it was because the rest of my face is really thin, and that it made my glands stick out. Now I believe it is Sjogren's.

Shelley, what all has happened with your glands?

Sorry....it's never fun.

Clem

#6 betty32506

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Posted 27 November 2008 - 12:35 PM

Shelley,

I don't know what kind of symptoms there are with paratoid. I have a problem, which my rheumatologist said doesn't make sense. Sometimes I move my tongue in such a manner instantly there is a quick but bad pain that goes from the base of my tongue up to the ear. Looking at a diagram of the face and neck it feels like that is where it is. Could you comment on this.
Thanks
Betty


>>I've been hospitalized several times (over 30 years ago) for severe parotid gland problems<<

#7 smac0719

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Posted 27 November 2008 - 02:55 PM

Clem,

First I'll say Happy Thanksgiving. I'm rubbing my tummy in between typing as we speak :lol: . I only know Sjogren's to be related to dryness issues. I have it as secondary to sclero and suffer from severe dry eyes and dry mouth (more so my lips). I see my sclero spec in SC in a few weeks. I'll ask him for more information. I do understand the frustration though of not knowing what is causing the symptom(s) of the day. I have actually stopped trying to figure it out and take/treat it as it comes. I have enough gray hair as it is!
I may have Scleroderma, but Scleroderma doesn't have me!

#8 nan

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Posted 27 November 2008 - 04:11 PM

Clem,
I have secondary sjogren's. My mouth is very sore, sensitive, and dry!!!!!!!!!! My eyes are super dry! My lips crack and bleed. I am fortunate in that my glands aren't involved. My joints hurt a lot and fatigue is the pits. I can't honestly figure out what is causing all of it. It could be my scleroderma or fibromyalgia. Who knows?
Good Luck,
Nan

#9 Purr

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Posted 28 November 2008 - 08:27 AM

Hi everyone.

I'm having some Sjogren's problems. They began the first of the week. My throat is scratchy and my lips are dry and sore in the left corner. By the sound of my voice at times, it sounds like I'm going through puberty!!! :lol:

I've been drinking (sipping?) ice water and chewing sugarless gum. It goes away for a little while and then comes back. The Sjogren's is a rather new experience for me. I've had a mild case with my nose and eyes, but it seems to be moving on to other things. I already use nasal saline spray, artificial tears, and restasis. Is there anything else I could be doing? :huh:

Hope everybody had a great Thanksgiving. It was a beautiful day here.

Christy
Love makes the world go around!

#10 debonair susie

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Posted 29 November 2008 - 08:57 AM

Hi Clem and All,

Shelley provided some great information! As a matter of fact, Shelley...your information was very enlightening for me :rolleyes: Thank you for that!

Hugs to you!
Susie
Special Hugs,

Susie Kraft
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