Sjogren’s Syndrome – Introduce yourself and meet others

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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I think Auqaphor works really well. I also use a moisturizing body wash (Olay). I slather Auqaphor on after my shower.

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@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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I have found that tree tea oil shampoo plus rinsing with witch hazel does help my head. My arms and legs keep itching.

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@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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Thanks! I’ll give it a try, my shampoo (Stieprox) isnt as effective lately.
Have a great day!

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@blindeyepug

I think Auqaphor works really well. I also use a moisturizing body wash (Olay). I slather Auqaphor on after my shower.

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Thanks! I’ve seen Olay but havent tried yet. and I’ll check for Auqaphor too.

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@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.

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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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@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

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@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

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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?

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@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.

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@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

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@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!!

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