1. < Autoimmune Diseases

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 Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 11, 2019
In reply to @rarelybees2889 "Serum eye drops are using your own blood serum, which is similar to tears to support..." + (show)
@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.

Jump to this post

@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

REPLY
Langold | @rarelybees2889 | Oct 11, 2019
In reply to @peach414144 "Thank you very, very much for this most important information about serum eye drops. As I..." + (show)
@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

Jump to this post

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

REPLY
Langold | @rarelybees2889 | Oct 11, 2019
In reply to @peach414144 "As wrong as I may be I find it very difficult finding a doctor who will..." + (show)
@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

Jump to this post

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.

REPLY
2 replies
zenk | @zenk | Oct 11, 2019
In reply to @rarelybees2889 "Peach, it should be a rhemetologist. This is an autoimmune disease that can attack your entire..." + (show)
@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.

Jump to this post

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

REPLY
peach414144 | @peach414144 | Oct 12, 2019
In reply to @becsbuddy "@peach414144 The severe dry eyes you have does sound very painful. What type of doctors have..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
peach414144 | @peach414144 | Oct 12, 2019
In reply to @rarelybees2889 "Peach, it should be a rhemetologist. This is an autoimmune disease that can attack your entire..." + (show)
@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.

Jump to this post

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)

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 12, 2019
In reply to @peach414144 "Of course you are correct. The three rhematologists here in my area seem to be from..." + (show)
@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)

Jump to this post

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

REPLY
1 reply
peach414144 | @peach414144 | Oct 12, 2019
In reply to @becsbuddy "@peach414144 This all sounds so sad. Do you have family who can advocate for you?" + (show)
@becsbuddy

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

Jump to this post

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

REPLY
Langold | @rarelybees2889 | Nov 28, 2019
In reply to @peach414144 "Yes, thank you I have seen many opthamalogists. Most do not know. I have not finished..." + (show)
@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.

Jump to this post

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

REPLY
elmay | @elmay | Apr 4, 2020

I was diagnosed with Sjogren’s by lip biopsy. I wake up during the night with my tongue stuck to the roof of my mouth and use a water bottle to take in some water. I can’t take either of the meds that increase saliva because they make me sweat so much I have to change my PJs. I use Restasis twice a day for dry eyes. That works for me. I take Plaquenil for a high CK level. My other issues are GERD, osteopenia, fibromyalgia, and some others I consider minor. I have a lot of sensitivities to medicines. Fortunately, I can tolerate Lyrica. Exercise and positive attitude are my best meds. Sometimes they just aren’t enough.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.