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PSS & Sjogren's


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#41 Guest_Soaring Eagle_*

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Posted 29 October 2008 - 05:10 PM

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?!

#42 mando621

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Posted 30 October 2008 - 03:25 AM

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.

#43 Guest_Soaring Eagle_*

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Posted 30 October 2008 - 03:29 PM

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?

#44 mando621

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Posted 31 October 2008 - 01:09 AM

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.

#45 Guest_Soaring Eagle_*

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Posted 12 November 2008 - 07:36 PM

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

#46 Guest_Soaring Eagle_*

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Posted 29 November 2008 - 05:02 PM

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:

#47 Guest_Soaring Eagle_*

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Posted 02 January 2009 - 02:28 PM

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

#48 Shelley Ensz

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Posted 05 January 2009 - 03:47 PM

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.

#49 Guest_Soaring Eagle_*

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Posted 05 January 2009 - 04:58 PM

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!

#50 Buttons

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Posted 06 January 2009 - 12:24 AM

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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Posted 07 January 2009 - 03:08 PM

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

#52 Clementine

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Posted 07 January 2009 - 05:17 PM

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

#53 Buttons

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Posted 07 January 2009 - 10:02 PM

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 ;)

#54 Guest_Soaring Eagle_*

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Posted 08 January 2009 - 01:59 PM

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