Sticky Blood-Hughes Syndrome Support
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Sjogrens Questions

Hi if anyone of my dear comrades has Sjogrens please answer a few questions I have! I have it and along with it dry mouth, mouth sores from dry mouth! Recently I had a tooth extracted! Since then got dry socket and Neuralgia in my face! Severe pain in the lip and chin area! My saliva has rerouted itself so that I drool! I've had a burning tongue for over a year now that my dentist says it's a true thing, but they don't no where or why it happens! She wanted me to go see a parthologist for it, but I declined! Now with salivary glands re touting itself Ian's Neuralgia pain in face I have no idea where to go and refuse a Neurologist! Had enough of them for a lifetime! I also have trouble swallowing due to one side of my throats having as they put it a defect, one side is much larger than the other! So for now I just persevere!!! My dentist says my gum disease caused by my Sjogrens! Therefore need many more teeth extracted! Had 2 looking forward to another 8 when I can afford it!!! I'd appreciate any feedback u have!!! GODSPEED to Y'all!!!

13 Replies

Hi, I also have ss, as soon as I mentioned this to my dentist after diagnoses, he put me on prescription toothpaste - 51g sodium fluoride dental paste sf 1.1%/Duraphat 5000ppm fluoride toothpaste. Because we dont have much saliver, we are prone to decay, gum disease, this toothpaste gives extra protection. Not too late to try it?

Im also part of the autrailian Sjrogens healthunlocked community, it would be worth you joining and posting this question to them? Like this community they are experienced in ss. They have really helped me with some issues.


Thx so much!


Hi Deb, seems as if you are having a time of it at the moment, hope things improve soon. Don't know if this is helpful to you or not but my sjogren's has made me very sensitive to any spicy foods to the point of blistering (especially on my tongue and the roof of my mouth). Avoiding even mild spices has helped me considerably along with sipping water all day to keep my mouth from getting too dry.

Best wishes


Dear Deb,

I have heard that some use Plaquenil for Sjögrens. Do you have some treatment especially for your Sjögrens? Have you had an appointment with a Specialist lately who knows both illnesses. Someone else after dr Erkan? Sorry I can not help you with your Sjögrens.

I hope your anticoagulation is working well as you know how much I rely on that treatment. The pain could not have to do with that do you think?

Good to hear from you as always and get your news but I wish you were feeling better and also you husband. Hope your sister Nancy is ok!

GODSPEED to you!



Dr "E" ! oh Deb. Lol! Run away!!!!! ( Yes you were right about your suspicion about my NYC doctor! )

I've reclotted AGAIN. One clot on April 1 2017 and again one discovered a week ago today. I've been in the hospital this week- released mid week on 14 mg warfarin and 70 mg LMWH ( Lovenox) ( I only weigh 108 so that's A LOT of anti coag medication....)

Can you believe he wanted to tell me I did not have APS- it was a " provoked clot" but couldn't really offer up a reasonable story that held water? Baby aspirin? Good thing I didn't listen and my internist didn't listen.

Anyway. My hospitalist started IV steroid treatments to help with painful / inflamed veins. I was starting to clot in other arm and both legs simultaneously and maybe micro clot in kidney. Scan this week on kidney.

Could you get steriod IV? I can't say if it's helped me...but if your veins hurt - mine Sure did- systematically it leads to phlebitis- which leads to clots. Does this affect the Ss at all and promote clots to blood supply to teeth? Gum tissue?

Also, I'm very sure you are aware there is a tooth paste and mouth wash and mouth care line available in any store without RX called biotene. It's for dry mouth. ( developed for side effects of medications for cancer I was told by a doc.)

Deb, one more thought. ( I know you don't want to hear it, so I ask for your forgiveness and patience in advance- because trust me.... we've ALL been here, friend!) I think you may reconsider a new neurologist with this issue. My question: is there a neurologist who specializes in these particular issues? "The tooth whisperer..." :)

For example, I'm loosing some of my functionl vision due to APS. Auto immune optic neuropathy- goes hand in hand with APS. Micro clots as well as ," sludgy blood" have hit my optic nerves. ( before I was diagnosed. Should have been a clue...) They are too thin, and my optic discs are " white like ghosts." The optic nerves have experienced significant death ( thinning) in places. These nerves are like cables to the brain. ( big problem for the brain - nerves are damaged. Info doesn't transfer properly to brain.) I have an " integration of visual information and processing problem." ( he tells me to imagine what all actually has to happen if some one tosses you a red apple...)

So I see a NEURO OPTHOMOLOGIST. Are you getting where I am going with this for you?

Is there such a thing as a neuro maxillaryodontological something?

I just don't see superficial fixes like topical mouth rinces keeping you comfortable for much longer.

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My eyes r in trouble too! I have HOLE in my left eye they say from macular degeneration! I may go to a pathologist for my burning tongue and neuro pain! I may go to Neurologist for Neuralgia pain! Thx so much

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Omg Kelly from Texas! Go private! All I can say is thank God I have conformation on him! That man is a real nut job lol... I'm going private! Where in Texas are u from! I've been twice to Dallas and Fort Worth! My friend Casey James from AmeoIdol use to live there!!!


The doc we are talking about in NYC was covered under my insurance plan, so that was not the issue. I saw him because he was an "APS specialist ". He just thinks very differently from Professor Hughes regarding the validity of "sero negative" APS and how high the tigers need to be to " get his attention".

My personal history ( as heavily soaked with APS clues as you could get) plus family history ( my mom kept clotting, died of o clotting complication, etc..) meant nothing to him, despite the thorough patient questionair sent by post ahead of time. His blood work up with me was impressively through. He screened for other clotting mutations such as factor V Leiden, etc. all I'm not at all sure on what grounds he dismissed my APS (?which I had previously tested low positive for twice 12 weeks apart B2 GP1 and aCL and clotted with a large DVT.) In his office I was in normal range. That was his reason for dismissing the diagnosis. He told me he felt Dr Hughes was over diagnosing APS and wasn't stringent enough with his admissible criteria.

I think he is I very good physician for women who are pregnant with APS. I hear he really is very good. I also think if you are a patient who's titers fall 70 or higher ( he personally told me that's really all he is interested in...) then he probably is excellent for them. He runs rituximab trials, He has his place contributing to this disease. My concern is there is is HUGE sub set of patients that do not fall into his particular "APS suprecemist " definition ( as my daughter likes to call it.)

Although he is doing many people a great service, I have to wonder, from personal experience, conversely how many is he harming? I fortunately did not listen, nor did some of my doctors. ( my hematologist dismissed me after Erkans suggestions, but my internist took over the warfarin until we secured another heme.) I went on to continue clotting despite raising Coumadin dosage and Lovenox bridging.

I'm from a small town north one hour north west of of San Antonio.


Thx yes great msg! Nice to know another comrad


No but ur right about the eyes! What r ur symptoms cuz I'm worried about my sister! She has APS 2! But no clots and just on aspirin and has a lot of tummy trouble like me! She has hypothyroidism too! The other day she woke up and her events felt funny! Both blurry! I made her do an eye wash and it got better, but first thinking I thought of was the microclits??? I also have ocular migraines! I didn't know what that was till my docs told me I had it! They said next 2 months at critical for me with my eyes! So hope it holds on!!! All I need is to loose another part of my body! I cud loose anything, but They took my beloved son 10 years ago!!! Why continue to harass me! I'm privately religious, but my faith is waning!!! God Forgive Me, but my thought process is confused a lot lately! I feel like I have Alzheimer's!!! Lol... GODSPEED


Her eyes not events lol...


I also have Sjrogrens syndrome. It's another autoimmune disease. It causes dry eyes and dry mouth. Sometimes I get mouth sores, also. I also have the drooling issue. I can no longer chew gum cause it makes me drool like crazy.


I guess that's Sjogrens with the drooling! The mouth sores, somehow the Saliva gets rerouted! Don't understand that! My throats bigger on one side than other! Have trouble swallowing!!! Lol... not really funny , but better to laugh! GODSPEED


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