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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 Comment63 Comments

EmpowHER Guest

let me know how you make out! Take naps... I do take evoxac for the dryness, check that with your doctor. At night for my eyes I use eye ointment (buy over the counter) does WONDERS!

April 16, 2012 - 8:29am
EmpowHER Guest

I'm on a journey too. 17 yrs of symptoms. Among the myriad of misery, a Rheumatologist diagnosed Sjogren's & Fibromyalgia in 1997. I had suffered first with thyroiditis after having my second child in 1995. It was not diagnosed and treated til much later due to DR's only focusing on blood results instead of symptoms. I do not know if that was the trigger?? 2000 I became very ill....01/2004 a kidney was removed after spending a year fighting with BCBS insurance.

It was a birth defect no one knew about. My PCP knew my left kidney was in my lower right pelvis but never said anything. Just it wasn't in the rifght place....so I thought it was slightly to the center - NOT on top my right leg. Anyway, I felt much better after the removal. I had spent years on a roller coaster of feeling I'll more days than not.

Fast forward to 2006. Had a surprise pregnancy. My son was born summer 2006. Everything went great til he was born. Opted for c section due to him being breech and last child. Was nauseous for 10 days before DR called in zofran. But myriad of symptoms starts again.

Today.....I find your post interesting because you are taking bcomplex and vitamin d.

I will find out more tomorrow but my problems may very well be a parathyroid tumor causing high calcium levels which dry you out, zap energy, cause pain and sleep disturbances etc.......but high calcium causes kidney failure, kidney stones, MVP, HBP, anxiety etc.

I had to stop my multi vitamin and stick with b complex. High calcium will lower vitamin D too. But supplements increase calcium. Parathyroid.com is an excellent site. It is worth a look.

I have an appointment tomorrow with a kidney specialist. After an endocrinologist blew me off, I went outside insurance -back to the surgeon who removed my deformed kidney. He scheduled tests the Endocrinologist should have. I think in todays economy it was my smartest move. He ordered my tests at a place covered by my insurance to get to the bottom of things instead of letting me walk out the door with the "everything is fine, your labs are all normal". Heaven forbid we only rely on labs and dismiss all the miserable symptoms right in front of their eyes.

This recent diagnosis was from a trip to an Urgent Care Center. I had calcium of 10.5. She advised me to drink water s the only way to bring calcium down is to flush it out. Which explains why I drink sooooo much all the time. And why I like lemon water. Lemon counters the calcium.

Anyway, thanks for your post. I'm still learning, researching and hoping for an answer to my fatigue, bone pain, dryness, flank pain, insomnia, muscle weakness, etc

April 16, 2012 - 8:08am
EmpowHER Guest

ONE MORE THING... get rid of the stress in your life! That causes flare ups!

April 16, 2012 - 4:39am
EmpowHER Guest

I have been diagnosed with Sjogrens for 6 years now. To be very honest... the doctos (who is very good) told me he can give me pain pills, steroid shots, heavier pain pills, it will keep getting worse, then there would be more treatments ... everything just covering the pain. I am 48 right now; that wasn't the answer for me. So, I started on my own journey, definitely made mistakes along the way (like trying to build up my immune system... bad) I ended up changing my diet completely. First, I cleansed my liver and body from toxins (yes, all those medications that I was sticking into my body), then I started feeding my body as much fresh uncooked clean veggies and fruits that I could take. I decided to be a vegetarian for one full year (commitment, but so worth having your health back). I drink a protein shake every morning with three fruits in it. I consume 10 alfalfa pills, if I get a flare up 20. Alfalfa is a natural anti inflammatory (it has so many benefits, I could go on just on that alone; big plus, no more sinus infections), I take 2 fish oils, one B vitamin (the entire B family, not just part like B6... they don't work when they stand alone), Vitamin D, and 3 lecithin and one multi- vitamin. (all the products I use are Shaklee, all natural - years of testing BEFORE they go to market... and well, they work for me. I will NEVER be without these). Bottom line, the doctor (now this is 2 years later) said he wishes all his patients would do what I do. The last report was... if I had done my normal (every 3 months blood work) they would NOT have detected this disease. I do not take any pain meds. One more thing, I am right now in a flare up. First one in over 6-8 months. I have not been doing my regular routine... I blame myself. BUT you can bet I am doing it now. Being in pain, swollen, tired and all the rest of it ROBS you of life. I pray you get yours back, don't give up hope. This is your life, grab it back and enjoy it. Keep trying things until you find what works. I know its hard, I hope this encourages you....

April 16, 2012 - 4:37am
EmpowHER Guest

I'm not sure if it's hereditary, but i was diagnosed with Sjogrens AFTER my last child was born. The only reason I found out that i had it was because the pediatrician found problems with his heart and asked me if i had some sort of ANA problem. My son is now 15 and has had a pacemaker for 8 years. So, you can still have children....but at what cost??

September 5, 2011 - 5:27am
EmpowHER Guest

You have already received advise and experience from people who have been suffering from Sjogren's far longer than I have but I wanted to share something that, for the moment at least, seems to be helping me to manage (not get rid of it) my pain. For me, the dry eyes and mouth are the least problematic, it's the constant pain, inflammation and numbness in my muscles, hands, feet and joints, the indigestion, the pain at the back of my throat and the chronic fatigue. I have always been very active and full of like of energy so another challenge is that I really miss being me. I have a secondary lung disease and couldn't exercise for months due to this, plus I've been on some high levels of Prednisone and other immune depressants (now CellCept). I was at a point where all the positive thinking I could muster just wasn't working any more and I have a very busy, stressful job that I love. I have recently started a regime that seems to be making a difference - it's not a miracle but I think it's worth a try. First, I'm eating mostly organic, I have started doing very easy yoga routines one day and twenty minutes of an easy elliptical program, followed by 10-15 minutes of stretching and breathing exercises every other day. And I start and end each day with about 10-15 min of meditation. During my day, I try to pace myself, don't sweat the small stuff (which, it turns out, doesn't really matter after all) and routinely do breathing exercises to limit my stress and calm my mind. This is all the natural stuff which is helping a lot BUT I was still having great difficulty sleeping due to the medications. I was reluctant to take a stronger sleeping aid as I am fed up with so many medications but I did so on the advise of my doctor and am really glad that I did. Bottom line is that all the good things that I have been trying could not override the fact that I was completely physically exhausted (I figured I had not slept more than 4 hours in about 8 months). Hence, while I'm still very new at trying to figure out how to manage this I wanted to at least share what seems to be helping me at the moment just in case it helps your friend. While I am not as energetic, I am able to cope - I work, I travel, I enjoy time with friends and my family. I wish your friend the best.

July 27, 2011 - 5:50am
EmpowHER Guest

Great news for friends and family who have body pain, fatigue and dryness!


three protein biomarkers in saliva will open the door for another diagnostic tool for Sjogren's that is not invasive!

there are studies at Upenn and ucsf to get tested!

April 11, 2011 - 5:34pm
EmpowHER Guest

Hi, I also have sjogrens and fibromyalgia.. I had painful joint and limbs,( and the soles of my feet, were so tender, it felt like I was walking on glass. I had constant headaches for years and suffer from migraine. I also suffer with IBS and was diagnosed with chronic fatique. Dry eyes, had get 4 punctal plugs and suffer with dry mouth. I am only taking plaquenil as all other drugs just made me foggy and sleepy. . ( I have seen a rheumlogist, Ophthalmologist, neurologist )But I highly recommend all users to see a registered Homeopath and see a chiropractor. As I have gotton such relief for all my energy, digestive and chronic pain problem from alternative medience. I am 31 and have been suffering for 7 years before I was diagnosed. So if in pain, try alternative methods, it has given me control of my life again. I now have a full time, study part time and enjoy a hobby of dancing unlike before, where all I did was work and sleep. good luck ladies...

March 26, 2011 - 5:58pm
EmpowHER Guest

I went to a rheumatologist about a year ago with all-over body pain. Through a large amount of tests, the only thing that had a red flag was my sjogren's symdrome test. However, there was never a diagnosis made. I have been told that I do not have fibromyalgia. I continue to suffer with all-over burning and throbbing body aches. At time I have sharp pains in spots, like one finger or my shoulder or my calf muscle. There is never one area that has sharp pains, it just varies from day to day. There are time throughout the year that I am not in so much pain, but once the cold weather hits, I am miserable again. I honestly am at a loss and need some input from anybody. I also had a CT scan a couple of years ago showing a small inflamation at the end of my pancreas. I am also due back for a mammo due to calcifications on my last mammo. I have a lot of pain in that breast, so they don't seem concerned. Anyone have any ideas for me?

October 16, 2010 - 10:16am
(reply to Anonymous)

I think you should see the rheumatologist again, or get a second opinion from another rheumatologist.

As far as the inflamed pancreas, that may be gone now, depending on the cause. Either way, you need to get back to a rheumatologist and get the mammogram done and find out whether you need some sort of follow up treatment for the calcifications.

Thanks for writing and good luck.

October 16, 2010 - 2:12pm
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Sjogren's Syndrome

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