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Guest Soaring Eagle

PSS & Sjogren's

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Guest Soaring Eagle

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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Guest Soaring Eagle

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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Guest Soaring Eagle

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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Guest Soaring Eagle

Hi, Jensue!

 

It sounds like we use a lot of the same strategies. I had the same issues with regard to feeling like my oral structures were all glued together. But, my doctor started me on evoxac (can I name the med?) and it really helped. I still sip fluids all day and I go through about 48 ounces of water in a 90 minute class. Gum helps, too. What level did you teach when you were still teaching?

 

Soaring Eagle

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This is a very valuable thread.

 

I had my second Schirmer's Test today and I've actually improved in two months just from Restasis and natural tears. I still have some room for improvement. My eyes feel so tired, dry and gritty. Even the natural tears during the day haven't helped completely. At least they no longer look bloody red.

 

I've been researching Sjogren's but still have so much to learn. I see my rheumatologist soon so we'll definitely discuss it. I've not even been officially diagnosed but the doctor today reiterated he strongly suspects it is Sjogren's. At this point, I am not really sure which symptoms I have are sclero and which are Sjogren's.

 

The doctor said to try flax seed oil and to wash my eye lashes with diluted baby shampoo. I'll pass on the latter. I have enough wrinkles as it is.

 

How does Sjogren's and GERD relate, or do they? Does anyone know if Cellcept helps Sjogren's? I want to be able to ask my doctor intelligent questions. What should I be asking? I'm not seeking a lip biopsy. No way. I get enough of those from my doggy Max when he tries to kiss me.

 

Thanks,

Clem

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Soaring Eagle I use gum but while in school I couldn't use it because it was banned for all pupils to have gum in school so would not have been good for me to be seen using it. I did drink lots but it is so difficult when you are trying to talk to children.

 

I also find I get a lot of mouth ulcers particularly on the inside of my lips which is very painful while eating certain types of foods and never seem to find anything that really helps.

 

I had been teaching children aged 10 & 11 but have also taught 11- 16 year olds, I do find it easier now I'm not working because I don't talk as much ;)

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Guest Soaring Eagle

Jensue, I'm lucky that I teach at the university level because I don't have to teach in the classroom all day long, although I do talk much of the day. But, it's easier to talk in an office than a classroom! I can't imagine having this and trying to teach in elementary or middle school! I don't know how you did it!

 

I was getting a lot of sores in my mouth and my dentist prescribed a couple of mouthwashes that really helped. Have you seen a dentist about your mouth sores? Mine has been very helpful. He also prescribed a cream to put on my lips when I get sores on them. It usually clears them up in about 35-48 hours.

 

Clem, I didn't have all the mouth sores, burning mouth, or dry eyes before I had the Sjogren's, so I am attributing those to the Sjogren's. The symptoms I can't separate are the joint pain and GI issues.

 

Soaring Eagle

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