Share this:
cmtg
@cmtg

Posts: 16
Joined: Aug 20, 2016

Sjogrens

Posted by @cmtg, Aug 20, 2016

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

REPLY

@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

Jump to this post

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

Jump to this post

Marylou…that is horrible. Now I know why I took an entire year to have a plate placed in my clavical. It was splinters. I wanted to have it left alone. I was terrified ad to what else could happen to. I am finding it difficult to trust doctors anymore. My Vertibra was crushed when I fell. Again surgeon brought his whole staff in to explain what they would be doing. If they didn't I could not walk without a brace. Two days later I said ok, and they took me immediately before I could change my mind. They used concrete to repair. I was drugged heavily.

I just don't think they look at Ys as individuals.

@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?

Jump to this post

I have had temporary plugs put in and they really helped. My Dr. didn't want to put the permanent ones in as he was concerned about having to take them out. He has replaced them a few times but they are wonderful. I was using drops every 15 minutes and now I can go for hours without using drops!

Should I start taking plaquenil that has been prescribed by my doctor for inflamation caused by sjrogens syndrome I am very nervous of all the side effects of this medication especially possible loss of vision.
Is there anybody out there that has taken or is now on this med?

@emarin

Should I start taking plaquenil that has been prescribed by my doctor for inflamation caused by sjrogens syndrome I am very nervous of all the side effects of this medication especially possible loss of vision.
Is there anybody out there that has taken or is now on this med?

Jump to this post

I am currently on this. The benefits outweigh the complications for me. Its one of the milder options. I was having severe inflammation, Daily hives & having to administer epi pens for anaphylactic shock with Sjrogens & SLE

Liked by Jamie Olson

Doed anyone here with Sjrogens also have a prolactinoma or high prolactin levels. Since May i have had a domino effect of being diagnosed with PCOS, fuctioning prolactinoma, hypothyroidism, then startef having hives all over daily, 2 session of anaphylactic shock. (Epi pen necessary) idiopathic. Once woke up throat closed off. Unable to breathe cough..anything. 2nd tongue swollen over 18 hrs. Diagnosis most recently primary Sjrogens w/other organs affected and other connective tissue diseases. Most likely SLE. Thats has been my past 6 months. I cant help but think it all relates back to the hyperprolactnemia. I have read about tests in People with SS with elevated prolactin levels. I was wondering if anyone else has pituitary disorder or anything similar. Thabk you in advance

@redhead63

Hi:
I too have Sjögrens but I do not have pain. Did the Doctor suggested any diet changes? Mind did, she told me try to eliminate grains and beans for 30 days. I am already on a Lactose Fructose and Gluten Free diet. Not by choice. Maybe that’s why I don’t have pain.

Jump to this post

Some people just have dry eyes and mouth. You may not have it w/other organ involvement. I am gluten free and it is debilitating for me. My entire life changed. I went from working full time to such fatigue i didnt want to move along with anaphylaxsis

@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

Jump to this post

@peach414144 I have was just thinking of you and wondering how you are glad your still here good to hear from you It's to bad this is how we do. I have sjorans also but am thankful I just have dry eyes and mouth .I use Biotene it helps me .I do have M.D. and glucoma my eyes water for no reason.I put drops in 4-5 times a day After reading how bad it can get I feel blessed its just my eyes and mouth Bless us all.

@kimber3429

Some people just have dry eyes and mouth. You may not have it w/other organ involvement. I am gluten free and it is debilitating for me. My entire life changed. I went from working full time to such fatigue i didnt want to move along with anaphylaxsis

Jump to this post

Hello @kimber3429, Welcome to the group. Thank you for posting and sharing your experiences. How scary to wake with your throat closed off! Do you have access to a physician that specializes with Sjogrens?

While waiting for other members of the group to reply, please see the link below. You may find this thread of members talking about Prolactinoma helpful-
https://connect.mayoclinic.org/discussion/prolactinoma-then-some/

@jamienolson

Hello @kimber3429, Welcome to the group. Thank you for posting and sharing your experiences. How scary to wake with your throat closed off! Do you have access to a physician that specializes with Sjogrens?

While waiting for other members of the group to reply, please see the link below. You may find this thread of members talking about Prolactinoma helpful-
https://connect.mayoclinic.org/discussion/prolactinoma-then-some/

Jump to this post

So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

Liked by Jamie Olson

@kimber3429

So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

Jump to this post

@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

@lioness

@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

Jump to this post

They also specialize in sjrogens & lupus. The harvard Dr id a rheumatogist and he specializes in sjrogens. He has over 35 years experience. Im pretty confident it is sjrogens it doesnt hurt to double check. Ive had 7 crowns this year.i never heard of it prior. My ssb Ro was 53 my ssb La was only 1.

Hi Kim, A Rheumatologist is your best bet for providing the best treatment for you. I was prescribed Methotrexate many years ago for severe sjogrens with gland swelling and joint pain . It helped a lot and I continued to take it for 10 years . The Rheum will know the best treatment for your particular symptoms. Best of luck, Zenk

I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related – both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

@donnass

I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related – both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

Jump to this post

@donnass
Hi
That’s an understatement if there ever was one.
I was there at the 1984 Worlds Fair. I can’t count how many times I changed my clothes or how many showers I took.
Jake

Please login or register to post a reply.