Sjogrens

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@graveltruck

Does your skin itch. My arms and legs really itch. I apply lotion twice a day and take benedryl. Guess it helps. It puts me to sleep.

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Something else to add 2 my list, thanks.
I have Remicade since 2008 for AS. So far its effective.

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

@sistermac

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

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Hello @sistermac, welcome to Mayo Connect. I am sorry to hear about your cousin. Hopefully others with similar diagnosis can join in the discussion and provide some information. I was able to find a few sites that may provide a little more information if you have not already found them:

Mayo Clinic Sjogren’s syndrome – http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/

Is it possible for your cousin to seek a second opinion from a specialist? Thank you for being an advocate for your cousin. If you can, please share any progress or findings you make.

Good luck…John

@sistermac

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

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Thank you John for responding, She has been to a neurologist, rheumatologist and has had MRI, scans and it seems she is getting worse..she can only walk a short way before stumbling and her vision is off…at this point it is my opinion she starts over a specialty hospital focusing on this type of disease

Welcome to Connect, @sistermac. I’m so sorry to hear about your cousin’s diagnosis of Sjogren’s Syndrome, but you have come to a great place to find information and support for her. You will notice that I have moved your message to an ongoing discussion here, about Sjogren’s syndrome.

There are many members here who have had similar experiences with Sjogren’s syndrome. Please meet @marylou705, @kyjeanne, @blindeyepug, @jillnc, @helloshelly7969, and @cmtg; I’m confident they will be able to give you some information.

Dealing with Sjogren’s can be very frustrating; @sistermac, besides medication, what methods or treatment does she use to try to manage it?

@sistermac

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

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I would urge your cousin to follow this up. It sounds like something more than Sjogrens to me. Mine is related to Psoriatic Arthritis. And Sjogrens occurs with other auto immune diseases. Her symptoms imply something else is going on. It can take forever to diagnose these things.

@sistermac

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

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She has gone to about four different doctors..I think is a mistake since she is getting nowhere but worse…I hope you get better and thank you for this email. I will try to get her on this site as it helps to speak to others in the same position..God bless

@sistermac

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out…can anyone she’d light on this…

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Thank you for your good wishes. Just had my second dose of Cimzia. It is supposed to take 3 months to take effect. I also use Restasis for dry eye. But I can’t remember how long or how many Drs I saw – we travelled a lot for my husband’s job. It was a good ten years or more. First symptom was falling flat on my face because my right hip gave way. Quite spectacular when you do it in the middle of a restaurant! Without the benefit of wine even!!

@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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I have major mouth issues. My doctor told me about 7 years ago that I had sjogrens and that it was “no big deal.” He said I just needed disease modifying drugs, and they never worked so he changed them frequently. He refused to treat my mouth and watched as my teeth wore away at the gums. I learned not long ago that my gums were eroding now too and I fear I will lose all my teeth. I can take almost nothing these days without getting every severe side effect and I am desperate to find something that will help. I let my old rheum go a year ago as I was sick of him ignoring me. My mouth hurt so bad and was full of sores and he told me “they will go away.” My smile was the only part of my body I ever really liked and now, I can’t even smile anymore. Has anyone else had problems with their teeth? It is going into my ears now too and I can not chew anything without hearing noises in them, it is maddening..

@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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I am sorry to hear about your tooth involvement. I have my teeth checked and cleaned every 6 months. On their recommendation, I use Phillips fluoride toothpaste once a day. Also use Biotene gel. Have used an electric toothbrush for years. There are also several chews OTC that you can use as often as you need them. A pharmacist can point you to them. Sounds like you need a new doctor.

@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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Thanks Marylou and yes, I finally fired him last year. I put way too much trust in him. I see a dental specialist at Mayo next month and I hope they can do something for me.

Hi all with Sjogrens syndrome, I was diagnosed in 1988 when the gland areas all around my eyes and the large glands under my chin and under my tongue became so swollen and hard like golf balls . I had no saliva or tears . At that time I did not even show an increased A&A but my astute doctor prescribed Methotrexate 15 mg /week for what he called sjogrens. The Methotrexate completely resolved the problem for me and I took it for 12 years with no sidefffects but for tiredness on the day after my injection. He monitored my blood monthly. As a side benefit my asthma was helped also. PS. Eye plugs have been great for me. I have had them for at least 10 years. Zenk

I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed with chronic kidney failure stage 3. Had a biopsy –directly due to the Sjogrens and now am on cellcept 1500 mg a day to keep my immune system from attacking my kidneys even more. Does anyone else have issues with this as well. Thanks

Hello @jlh658,

Welcome to Connect. I’m so sorry to hear about your condition, but you’ve come to the right place, and I’m confident that this community will help you with some much needed support and answers.
You’ll notice that I moved your message to this discussion about Sjogrens, where you can meet @cmtg, @blindeyepug, @graveltruck, @kyjeanne, @chicagomichelle, @marylou705, @fleure, @jillnc, @zenk.

You may also wish to view this discussion about chronic kidney failure: http://mayocl.in/2kvZpbb, and our Mentors @predictable, @rosemarya will hopefully provide more insight as well.

Here is some detailed information about Sjogrens, from Mayo Clinic, and I would sincerely encourage you to read it: http://mayocl.in/1BcAE3F
@jlh658, besides medication, what other steps have you taken to make you more comfortable? Have you made significant changes to diet?

@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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My Sjogrens seems to be getting worse. I use Restasis, Theramints, and drink gallons of water. We are discussing salivary gland plugs. Have a humidifier at night. I use fluoride toothpaste at night. Sometimes I have trouble swallowing. I’m taking Cimzia for Psoriatic arthritis.

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