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Sjogren's Syndrome.... I need your help with treatment and Pain Management

By Expert HERWriter April 9, 2009 - 4:09am
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I was talking to a dear friend of mine yesterday and she was telling me about one of her best friends, who has been diagnosed with Sjogren's Syndrome.

Her friend has been to multiple doctors (25!) and was treated for MS for 6 years before they discovered she actually had Sjogren's Syndrome.

This poor woman needs your help.......If you have Sjogren's and can help answer some questions below, it would be so helpful to her and to everyone who's trying to advocate for her.

She is simply not able to get her pain under control. I don't know the whole story, but it's something about the doctors not wanting to give her pain medication??? She is clearly suffering and needs pain management.

These are the questions I was wondering about:

-What is typically prescribed for severe pain for Sjogren's patients?

-Is there a diet she can follow that will help her?

-Ever heard of IVIG?? It's a drug to treat Sjogren's.

-Anyone being infused with IVIG? She has to have infusions every two weeks and it costs $8,000. Per treatment.

-Any other drugs you or someone you know is taking for Sjogren's?

Ladies, this woman is one of us. This was a woman who was on top of the world. Then she got sick, couldn't work anymore and is now in a very serious situation, physically and mentally. She may have to move, give up her place and a city she's loved. And on top of all of that, she continues to battle with her insurance company every single day over her infusions.

Honestly, we all think this could never happen to us.... But guess what-- it does.

If you have any advice, tips or can share your own story about Sjogren's Syndrome, please feel free to post back to me. I know my girl friend would be most appreciative, since she's trying to advocate for her friend. There is nothing worse than having a dear friend who's sick. I know all too well as I lost my best friend to lung cancer. And trying to advocate for her was one of the toughest things I've ever done.

Any information you can offer will be greatly appreciated. It sounds like she's in desperate need to get her pain controlled and to try and keep her life from totally unraveling.

Big hugs,


Add a Comment60 Comments

EmpowHER Guest

I became symptomatic in 2007 it's been an educational journey that's for sure. I currently take plaquinil/Carbamazaphine/Nadalol/
Cymbalta and have IVIG treatments every two weeks. Also just started medical Marjaauana.

With all levels this I am able to control my pain so much better. I will never be pain free this I know but at least I'm much better then I was and can function so much better. I have Sjogrens with cranial and perifrial nerve involvement with small nerve neuropathy and trigeminal neuralgia. You need to have a doctor that is a Reumetoid Immunologist. I went through a variety of different medications before finding what works for me. Some meds the side effects were worse then the disease. You need a doctor that works with you to find the right combination. It's a long journey but keep fighting

July 15, 2017 - 1:05pm
EmpowHER Guest

I take morphine 3x/day. They had me on hydrocodone, but eventually I couldn't take the pain and ended up in the ER. Sometimes you have to advocate for yourself by pushing and not taking no for an answer. Protest! Cry in front of strangers! Tell them if the pain is TOOOO much. I was admitted and they could see that my pain was real, but I had to let all my frustrations out and be an emotional mess for a bit, which I do NOT usually do to strangers. Also, for those with mouth pain, there is a prescription mouthwash in a little brown medicine bottle called Magic Mouthwash, and it truly works! Rinsing a few times starts mending the worst sores. You have to have your dr prescribe it. Another thing, IVIG is not a drug. It's the result of 1000-1500 blood donations, which are then used to extract immunoglobulins that are part of and a boost to the immune system. That's why it's so expensive.

November 25, 2014 - 7:51am
EmpowHER Guest

I got some relief from a butrans patch (10 mcg) but also use nuycenta, hydrocone, and oxycodone on occasion. An alprazalam with the pills will help, the mildest. And still the pain can just be grinding. You cannot think of two things at one time, so watch a movie, do needlework, anything to concentrate on something beyond the pain. It is a challenge. My pain has gotten much more severe, and Dr.s act like you are making it up. Mine is in nerves. It is miserable, and dictates what I can do every day.

November 21, 2014 - 9:38pm
EmpowHER Guest

Hello there! I hope this finds your friend suffering from Sjogrens doing well. I was diagnosed with Sjogrens almost 4 years ago. I do take pain medication as my joint and muscle pain are a serious problem. However, I also have issues with skin rashes, failing eyesight and my teeth are falling out. I believe that this disease is very misunderstood and one that someone must experience to understand. The doctor's are not compassionate to the pain associated with this disease. Much more research needs to be done. Hang in there. don't give up your search for a competant doctor. Best of luck.

August 22, 2014 - 12:30am
EmpowHER Guest

I am like your friend. Live in Australia. Noone can help me-please help. PAIN IS UNBEARABLE. dry eyes and dry pleurisy out of control. i see no point in going on.

August 15, 2014 - 10:17pm
EmpowHER Guest
Anonymous (reply to Anonymous)

U need 2 find a good dr that will listen to your needs and help u treate your symptoms. I'm a 27 year old mother of five kids. I was a NAC/medtech at a retirement home I worked 75 hr a week . I was in nursing school . I got diagnosed when I was 24 years old with RA . Now I'm being told I have sjogrens and fibromyalgia . I'm also diabetic . Since I'm dealing with disease I'm not working anymore I'm on tons of meds . I feel fateged ever day no matter how much I rest . My had and feet swell up like ball ones in terrebel pain all day long . i don't know ur family situation or ur capabilities . But plz don't give up . You have 2 be strong . I know it might seen like u jest want to let go but plz plz be the strong beautiful person u were ment to be .

September 28, 2014 - 11:20pm

My poor mother was diagnosed yesterday with this awful syndrome. She went to 10 doctors who told her she had Lichen Planus, and finally one took the time to figure out what was going on.
She does not want to live, given her mouth sores, pain and general diminished quality of life.
Her mouth sores are ongoing and painful, has anyone found anything that can help? She goes through a tube of Orabase daily and nips on gin to take the sting out of her sores so she can eat. Not a great solution. Thanks in advance for any and all suggestions as to how we might find relief!

July 12, 2013 - 7:48am
EmpowHER Guest

I was recently diagnosed with Sjogren's type B that affects connective joint tissue and internal organs. I perspire, cry and salivate just firn, but my insides are eating themselves up. The pain in my joints is excruciating. You have to live it to know it. Sometimes I think the doctors lack compassion when it comes time to prescribe pain medication. I feel awkward asking for pain meds, but the pain is intolerable. I pray for your friend and wish her the best of luck.

May 25, 2012 - 11:17pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Oh My..so many suffering. Me..Breast Cancer, Mycosis fungoides ( non Hodgkins lyphoma)...low thyroid and polps, RA., Sjogrens.. I have had every RA drug without results...now I am doing pain clinic..double hip injections, double shoulder injections, neck epidurals, spinal epidurals. It helps...but wish I could have all over relief at once. My big question today is WHY is'nt there an eyedrop that can help the eye pain??? It is unbearable. Pain meds tha i take for my RA do not help my eye pain...it feels like glass in my eye. Usually one eye at a time. I have many rituals..specifically for my eyes..lubricated eye drops all day..maybe as much as 15 times a day. Johnsons baby Shampoo to wash my face and eyes..then right before bed time I use the eye gel in both eyes faithfully...Also for the dry mouth I use biotene toothpaste, mouthwash, spray ( by bedside and in my purse)...it helps. The cost of these medical supplies is really tough. Listen, Girls, I am praying for all of you!! Hugs and Chin up! MJ

June 13, 2012 - 11:44am
EmpowHER Guest

I too had hoped that the tennis star would come forward with her illness yet she has not---Julian Lennon (yes johns son)-google him he does a lot of work for Lupus etc..seems it is all for a friend of his he watched suffer so bad--she is the LUCY in "LUCY in the sky with Diamond" other than him-I think most career actors are afraid to come out about their illness as it may affect their jobs status-all of us would be out there too and boy they wouldnt want that.I think when someone gets it bad enough-when all choices are gone and the Lupus /sjogrens chooses for them then they will come forward..I cannot make appointments ahead of time-I cannot tell you if next week on tuesday I will be able to get up and make it to where ever..people used to tell me ""i have it too but I won't let it beat me" BS sorry but sooner or later you have no option of choice-then you stop worrying about tests and diagnosis and start to just deal with one day at a time and whatever symptoms you are having.I don't want you to loose faith but face reality-listen to your body..

April 21, 2012 - 6:47pm
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Sjogren's Syndrome

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