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.

@johnwburns

Sorry to hear that.
Sjogren’s is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto’s Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

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I have Hashi's. Six years ago, I had major autoimmune issues. As you may know not everyone with Sjorgren's shows positive blood results. I have other related issues such as Renaulds. I have had optic nueritis twice, rare with SS.

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@becsbuddy

@rarelybees2889 Good morning. Can you tell us more about the serum eye drops? I’ve never heard of them!

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Serum eye drops are using your own blood serum, which is similar to tears to support tears. You have to find a place that will do them (some Lion's Club eye centers) and have a prescription from your doctor. They take your blood, spin out the serum and give you small vials for your eyes. You have to keep them all frozen but one that you use for a limited period and then throw away. It seems like a complex system, but they really do help. Unfortunately the FDA hasn't gotten around to approving them, but most eye doctors support their use. If you have severe dry eyes, they help a lot. There is a company called Vital Tears that does them, although they are also researching also, so just be aware of that and ask to "opt out" if you don't want to be in the research. This company sees the commercial possibilities because serum eye drops are very popular. They don't produce tears, but are similar to what you tears should be (if your eyes don't make them) if you have SS or other issues.

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@rarelybees2889

Serum eye drops are using your own blood serum, which is similar to tears to support tears. You have to find a place that will do them (some Lion's Club eye centers) and have a prescription from your doctor. They take your blood, spin out the serum and give you small vials for your eyes. You have to keep them all frozen but one that you use for a limited period and then throw away. It seems like a complex system, but they really do help. Unfortunately the FDA hasn't gotten around to approving them, but most eye doctors support their use. If you have severe dry eyes, they help a lot. There is a company called Vital Tears that does them, although they are also researching also, so just be aware of that and ask to "opt out" if you don't want to be in the research. This company sees the commercial possibilities because serum eye drops are very popular. They don't produce tears, but are similar to what you tears should be (if your eyes don't make them) if you have SS or other issues.

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Thank you very, very much for this most important information about serum eye drops. As I am slowly going blind (now legally blind) and also having severe dry eyes it is so very much welcome. Thank you, thank you. Peach

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As wrong as I may be I find it very difficult finding a doctor who will address the issue of Sjogrens. Would anyone know of the specialty doctor who will diagnose and work with this? Pretty bad here where I am. Peach

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@peach414144

As wrong as I may be I find it very difficult finding a doctor who will address the issue of Sjogrens. Would anyone know of the specialty doctor who will diagnose and work with this? Pretty bad here where I am. Peach

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@peach414144 The severe dry eyes you have does sound very painful. What type of doctors have you seen? Did you see a ophthalmologist? They are eye specialists.

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@rarelybees2889

Serum eye drops are using your own blood serum, which is similar to tears to support tears. You have to find a place that will do them (some Lion's Club eye centers) and have a prescription from your doctor. They take your blood, spin out the serum and give you small vials for your eyes. You have to keep them all frozen but one that you use for a limited period and then throw away. It seems like a complex system, but they really do help. Unfortunately the FDA hasn't gotten around to approving them, but most eye doctors support their use. If you have severe dry eyes, they help a lot. There is a company called Vital Tears that does them, although they are also researching also, so just be aware of that and ask to "opt out" if you don't want to be in the research. This company sees the commercial possibilities because serum eye drops are very popular. They don't produce tears, but are similar to what you tears should be (if your eyes don't make them) if you have SS or other issues.

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@rarelybees2889 Thank you for letting me know about the serum eye drops. I really appreciate it. I’ll have to pass on the info to my sister who has Sjorgrens. Thanks

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@peach414144

Thank you very, very much for this most important information about serum eye drops. As I am slowly going blind (now legally blind) and also having severe dry eyes it is so very much welcome. Thank you, thank you. Peach

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You are very welcome. I am so sorry for what you are going through…HUGS

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@peach414144

As wrong as I may be I find it very difficult finding a doctor who will address the issue of Sjogrens. Would anyone know of the specialty doctor who will diagnose and work with this? Pretty bad here where I am. Peach

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Peach, it should be a rhemetologist. This is an autoimmune disease that can attack your entire system. Rhemetologists are specially trained to identify and treat autoimmune disease.

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@rarelybees2889

Peach, it should be a rhemetologist. This is an autoimmune disease that can attack your entire system. Rhemetologists are specially trained to identify and treat autoimmune disease.

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I see a eye doctor that specializes in corneal issues. He has helped me with my dry eyes
.Have you tried plugs in your tear ducts ? They really helped me. Zenk

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@becsbuddy

@peach414144 The severe dry eyes you have does sound very painful. What type of doctors have you seen? Did you see a ophthalmologist? They are eye specialists.

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Yes, thank you I have seen many opthamalogists. Most do not know. I have not finished the sentence so as not to undermine their practise. (Not to include all of them. Most seem to want to focus in the immediate. and not the whole picture To me not all but most. Wish I cold know if there are scientists working on this most serious and necessary part of living a more content way of life. Very sad for all including the families.

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@rarelybees2889

Peach, it should be a rhemetologist. This is an autoimmune disease that can attack your entire system. Rhemetologists are specially trained to identify and treat autoimmune disease.

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Of course you are correct. The three rhematologists here in my area seem to be from another demension. They seem to be somewhat overwhelmed by the sheer amount of patients and do not apear to want to address the whole of the patient. High percentage of oldsters in my area. I saw a new geriaenologist ;ast week for the first time and when he was finished he said O.K. I will see you in five months from now. (This to a patient with many issues). I am seeing a new doctor now. Frustrating but not to many years left now. (82)

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@peach414144

Of course you are correct. The three rhematologists here in my area seem to be from another demension. They seem to be somewhat overwhelmed by the sheer amount of patients and do not apear to want to address the whole of the patient. High percentage of oldsters in my area. I saw a new geriaenologist ;ast week for the first time and when he was finished he said O.K. I will see you in five months from now. (This to a patient with many issues). I am seeing a new doctor now. Frustrating but not to many years left now. (82)

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@peach414144 This all sounds so sad. Do you have family who can advocate for you?

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@becsbuddy

@peach414144 This all sounds so sad. Do you have family who can advocate for you?

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Thank you for asking but no. Some people must go solo sad to say.

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@peach414144

Yes, thank you I have seen many opthamalogists. Most do not know. I have not finished the sentence so as not to undermine their practise. (Not to include all of them. Most seem to want to focus in the immediate. and not the whole picture To me not all but most. Wish I cold know if there are scientists working on this most serious and necessary part of living a more content way of life. Very sad for all including the families.

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Usually they want you to see a cornea optho, I have seen nuero opthomology too at Mayo. Love it there…

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