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Guest Soaring Eagle

PSS & Sjogren's

54 posts in this topic

I was diagnosed with progressive systemic sclerosis with GI and pulmonary involvement in 1988. Today my GI doctor said he thinks I may have developed Sjogren's. I'd like to hear from anyone who has that in addition to PSS.

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Soaring Eagle,

I'd like to welcome you to the ISN forums. Your statement that you have had PSS since 1988 is encouraging to me and I know it will be encouraging to others. Thanks so much for sharing that news. I am sorry to hear that you may have developed Sjogren's. I can't speak personally about it, but I can provide a link to our pages on Sjogren's Syndrome. I hope you'll find lots of good information.

 

I do know we have many members with Sjogren's. I'm sure you'll being hearing from them. I hope that you get the help you need to deal with Sjogren's comfortably.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks, Janey! I posted another notice about being misdiagnosed, not thinking this one had made the forum (I wasn't sure I had done it right). I look forward to hearing from others. I'm just still so excited every day when I wake up and am not dead! When I was diagnosed, the rheumatologist told me my prognosis was not good since I already had lung and GI involvement. Things have been really bad at times but my support team of great physicians, family, co-workers, and friends always pull through. Someone else mentioned the need for humor. I have XM satellite radio in my car and I tune into the LaughUSA channel everyday on my way home from work (and on the way home or back to work after doctor visits!)! One day there was a really funny comedian who did a song about prednisone. I almost had to pull over I was laughing so hard! I got her CD and it's great. I don't know if we're allowed to put names of products on this site, but if someone can tell me it's OK I'll give everyone her name and D title. If I can't, you can look on I-Tunes for "Prednisone" (hmm, was that allowed?)

 

Keep Laughing!!

 

Soaring Eagle

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To answer your question, I too have Sclero with Sjogren's and 4 other autoimmune diseases in addition. The Sjogren's has really left me with dry eyes, dry mouth, and dry everywhere, if you know what I mean. I have to use special toothpaste and a magic mouthwash for the dry mouth. I make sure that aI go to the dentist every year and he keeps an eye on it also. I was just in last week and he said that he can really see the sjogren's. I used to wear contacts but because of the dry eyes I don't anymore. I just saw my rheumatologist doctor for my quarterly apt yesterday and she said the sjogren's can really wreck havoc when in addition to the sclero. It's because of having both that she doesn't every want me to try the cyclophosphamide again. I did cyclophosphamide for 4 months but it then attacked my kidneys/bladder so I had to quit it. I have a protein marker that they are watching for lymphoma and because of the sjogren's and the use of cyclophosphamide it apparently has really amped up the possibility of the lymphoma. I don't understand how all this works together but that's what she said.

There are a lot of dental products for dry mouth. They also to say make sure to chew sugar free gum as it provides more saliva while chewing or something.

I wish you look and you've come to a great place for support and for questions.

Warm hugs,

Peggy

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Peggy,

 

Thanks for responding. I have found the sugar-free gum trick. My doctor did mention the "Magic Mouthwash" this morning after the endoscopy, but I was thinking of a hundred things and just kind of "heard it without processing it". I'm supposed to go see him (GI) on Oct. 27, so I'll ask him about it then. You mention that there are several dental products. If I just call my dentist and ask about dental products for Sjogren's, will that be enough? What experiences have you had with dental products? What worked or didn't work for you?

 

I wore contacts too and had to stop. At the time, they said it was because I was taking medrol, but your comment has me wondering about that. It was a while ago, so maybe there wasn't any relationship. On the other hand, I have had dry mouth for quite a while, but I always blamed that on my meds as well. Taking into account everything I've learned since this morning when my doctor mentioned Sjogren's I'm starting to wonder if I've had it for a while and we're just now figuring it out!

 

I can't image dealing with 4 autoimmune disorders at one time -- i have days (sometimes months like right now) when dealing with 1 and 1/2 are more than I can handle!! I admire you. I hope you are able to make the trip to visit your granddaughters!

 

Soaring Eagle

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Hi again Soaring Eagle,

 

I have the symptoms of Sjogren's, actually that was the beginning of my problems. I have extremely dry eyes and I use the Restasis drops. They help tons. I can't really use over the counter drops, they irritate me more than help.

 

I have dry everything and I'm lucky my husband is sensitive to that!! I also have burning mouth which makes me feel like my mouth has been scalded at all times. I sometimes say, I feel like I could shoot flames from my mouth.

 

So far, I haven't been officially diagnosed with Sjogren's because I would have to go through the lip biopsy. I'm not going to do that.

 

I use prescription strength toothpaste, the sonic toothbrush, try to use dry mouth -mouth rinse but I forget more than I remember.

 

The combination of dry mouth and smaller mouth is the worst when it is time to go to the dentist.

 

I started having dry eye and such about 10 years ago. I'm still not officially diagnosed with anything but a Sclero-like problem. I have trouble swallowing, as you found on my other post, which I'm not sure if it is related to Sjogren's or the scleroderma type problems. Both can affect swallowing.

 

Well, I need to leave for my yearly GYN appointment.

 

Mando.

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Hi,

I was diagnosed with Sjogren's and Fibromyalgia in 1998. My rheumatologist at that time said that Sjogren's wasn't a big deal. Yeah , right! I no longer go to him. I was diagnosed with Scleroderma in 2006. I think I have had it longer than that, but I was harder to diagnosis because I don't have the skin hardening. I find that everything being dry really affects digestion.. My poor GI tract isn't too great. I notice that you started with lung and GI involvement. I can't use a lot of the dry mouth products because the aftertaste gives me acid reflux. I take 30 mg. evoxac three times a day. That does help. I use hypotears, sometimes 6 times a day. I also use restasis. Feel free to pm me if you have any other questions. It's encouraging to see that you're still kicking after 20 years with the diagnosis of scleroderma. I can't believe that you still work. I am impressed.

Take care,

Nan

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Soaring Eagle:

 

The dental products I use I just buy over-the-counter. If you ask the Pharmacist they will direct you to them. One of them is Biotene. The dentist also recommended a brand of toothpaste which is good for us as it's not hard on the gums as Sjogren's can eat away at the gums. I already have Ginigivitis because of the Sjogren's.

 

I really believe the dryness of the eyes is why wearing contacts is so hard. I'm sure there's not enough moisture throughout the day so by even mid-afternoon when I would go to take them out I would almost have to "peel" them off my eyeball. It's like they were stuck on.

 

The magic mouthwas works great. I also take the Effoxac (sp) and that seems to help too. I do know that my rheumatologist doctor said that Sjogren's along with Sclero makes it pretty nasty. I was like you were and not even aware of the fact that I had Sjogren's. I just thought I was thirsty because I didn't slow down enough to drink enough water.

 

I hope this helps.

 

Warm hugs,

 

Peggy

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Question:

You keep referring to the Magic Mouthwash. Is that its actual name? or is it a brand that can't be referenced here. I've never heard of it.

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I don't know if that is the brand name. Maybe Peggy can shed some light. I've used my toothpastel for about 4 years (I think - pretty much ever since it hit the market) along with an electric toothbrush so I am glad that it is considered to be a good toothpaste for people with Sjogrens.

 

Keep showing off those pearly whites!

 

Soaring Eagle

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Hi, folks. Let me answer some of your questions. Firstly, "magic mouthwash" is a term which is applied to any number of concoctions prescribed by a doctor or given by a pharmacist to treat a particular condition; so one person's magic mouthwash is not necessarily the same as another. The combination should be geared to your needs and prescribed with your other medications in mind. We sometimes hear of a "gastric cocktail" which also varies in content.

 

Please talk to your doctors about this if it sounds like something you might need or wish to try.

 

As for brand names, we do not allow use of brand names of over the counter products, though most prescription brand names are allowable except for some controlled substances (because of personal security). Please use the generic names for products such as acetaminophen instead of Tylenol, liquid antacid medication instead of Maalox, etc.

 

You may mention brand names when they are included in one of the medical pages of the site, for example Biotene products listed on our medical pages. I hope you will find our pages on Sjogren's Syndrome and Scleroderma Dental Involvement informative and useful.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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"Spray candy" I had never heard of such. My diabetic daughter had thyroid cancer and was told to suck on sour sugar free hard candies to help with the clearing of the chemo. When we finally found some and looked at the carbs, there were as many as in the sugar ones. Then she found spray candy. 1 Bottle containing 18ml has a total of 2.6g of carbs. Each bottle holds many sprays.

 

I have dry mouth and was taking evoxxac that did not seem to help. I tried the spray candy and it gets results. It is in a small spray container and you just spray a couple of squirts in the mouth and it last a while. That suits me better than gum. Of course that only addresses the dry mouth aspect but I assume gum would too. It is a good mouth refresher too.

 

I went on the web and was greatly surprised that there were so many hits.

Betty

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Carrie - Thanks for the clarification on what can be identified re brand names. I had wondered about it and saw it on a couple of other messages - I guess they just slipped by or I was dreaming because I went back to look for one and it had been deleted as had mine!

 

Betty, Wow - I've never heard of such a thing (spray candy)!! It definitely sounds like something I would like to try. At what kind of store did you find it, and in what section (candy/mouth lubricants...)?

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Hi I do have Sjogrens as well. I think compared to many, mine is mild. I use Systane drops for my eyes and do the gum thing and also use a moisturizing mouthwash that is also heavy on fluoride to ward of dental carries. I do hope you can find a regime that is helpful to you!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks for letting me know about the Systane. I've been reading articles today and I'm amazed at how many things I have experienced over the last few months that support my GI doctor's hypothesis. For example with the eyes, I went to my eye doctor about 4 months ago because I was waking up with gritty, dry eyes and he said it was because I was sleeping with my eyes open! He had me put a gel lubricant on my lower eyelid and told me to use eye drops during the day. Interestingly enough, a couple of weeks later I developed conjuncitivitis. Now I'm wondering if that was a sign. I've been getting sores in the corners of my mouth, and that is symptomatic. I have had repeated bouts of thrush, and that is characteristic. This summer I started using a nasal saline lubricant because my nose was always dry. Hoarseness is an ongoing problem, but, that to, I attributed to meds and the fact that I keep getting dehydrated. I drink water all day long, and when I started on the gastroparesis diet in July, it was recommended that I sip on a sports drinks ( to get the electrolytes because my blood tests were not normal in that regard; it's not my favorite thing to drink but in the last month or so they've come out with a diet version of the drink that I like the taste of better). Then, of course, there's the dry mouth which I have been blaming on the medrol and plaquenil. Then, 3 weeks ago I developed blisters and ulcers in my mouth that culminated in the trip to the ER Friday when I had difficulty swallowing liquids. I've gotten IV fluids 3 times this week. An endoscopy Thursday was essentially normal, and that is when my doctor said he was uncomfortable with everything that's been going on since July and wanted to pursue the diagnosis of Sjogren's. After all I've read today, I truly believe he has figured it out. In the next 2 weeks I'm seeing an ENT, my rheumatologist, then back to the GI who is going to take everyone's reports and either confirm it or take another track. I don't want another diagnostic label, but it would be a relief in some ways to have an explanation of why the last 3 months have been so bad. I haven't eaten anything solid since Sept. 20, so if we can figure out what it is and treat it, maybe I can resume eating in time for my aunt's pecan pie at Thanksgiving!!

 

 

Soaring Eagle

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Jefa did answer your question to me about the "Magic Mouthwash". I just had mine filled again and the prescription has tobe written out by your doctor. It must contain alot of goodies though as it really works well. I was just at my dentist and I mentioned this to him and he said he had a number of patients with Sjogren's and was going to try to remember to tell them about it as he had never heard of it.

 

When you take it to your pharmacist drop it off and plan on going to pick it up the next day or so as it takes a lot of time for them to mix it up, at least it did when they did mine. It has so many components to it and they have to mix it altogether.

 

I hope this helps.

 

Warm hugs,

 

Peggy

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Thanks, Peggy! I'm making a list of everyone's feedback to take to my doctors and dentist.

 

Soaring Eagle

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Soaring Eagle,

 

This is an interesting thread because I had never heard of candy spray and magic mouthwash. Although I've never been diagnosed with sjogren's, I do notice my eyes are very dry by the end of the day and it's usually worse in the winter with the dry air. I don't however have dry mouth issues.

 

I'm sorry to hear you've had such a rough time since July. I am hoping your doctor comes up with something to give you relief so you can enjoy your aunt's pecan pie. (That's one of my favorite pies too!)

 

I am so glad everyone's given you such great information.

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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They are in our local discount department store in the candy section. We speculated that it could be goodies for halloween. Google has lots of hits but I didn't check any out out.

Betty

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Betty - Thanks for the info, and Razz, thanks for the encouraging and supportive words. My favorite college football team just beat my sister-in-law's alma mater - we've been e-mailing back and forth during the game. She called me before the game started to 1) see how I am doing today and 2) to tell me she was going to pull FOR my team and against her alma mater because she knew a win would make me feel better. After the game I wrote her and told her that I am cured!! No more gastric paresis, no more sjogren's assumptions, and no more systemic sclerosis!! The last 4 hours were fun and much needed!!!

 

Soaring Eagle

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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."

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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.

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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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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

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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.

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