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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

Expert HERWriter Guide Blogger

lacheney - It would be interesting to know the doctor's source for that information. Multiple sources, including Mayo Clinic, state that scientists really don't know why some people develop Sjogren's syndrome and others don't. It's believed that certain genes may put people at higher risk for this, but that there also needs to be a triggering mechanism, such as an infection with a particular virus or bacteria.

June 17, 2010 - 5:03pm

I recently went to the Rhematologist and was diagnosed with Sjorgens and Rhematoid. He told me that I needed to have a permanent form of birth control because Sjorgens is 100% passed on to the baby. I had a hysterectomy so that was not an issue for me but what about these younger girls who are child bearing years are they being told this as well. I think that this is a significant thing for people to be aware of. There could be children walking around for years with this before it surfaces and then if they have children it goes on and on. This is a serious issue. You should all talk to your Rheumatologist about this and get their imput if you are still able to have children. Just because one Doctor says it does not make it so but he must have gotten the information some where so it warrants closer investigation.

June 17, 2010 - 9:41am
EmpowHER Guest
Anonymous (reply to lachaney)

that's interesting. I've never heard of a disease being 100% hereditary.

June 17, 2010 - 3:29pm
EmpowHER Guest

I was the one that wrote April 26, 2009....lost a kidney. I quit the plaquenil. I was having vision problems and had severe abdominal pain. I thought since last time was 6 months, I could afford to try stopping it. Well my legs were in horrible pain and BP up and couldn't sleep.

I reached a point where a neighbor suggested magnesium. The 500 mg magnesium / 3 times a day did wonders. Because I was really worried about needing crutches to walk and the pain at night was terrible. Well then I added Vitamin C / 1000 mg - 4 times a day.

And recently researched vitamin D. Added D. Research suggests low levels of Vitamin D correlate with autoimmune disease as well as, high blood pressure & muscle and bone pain. I am very much improved over the 6 weeks. I added One a Day over 50+ multi vitamin.

I also started drinking milk in the morning and at night.

OH and gave up coffee. Well almost entirely lol. I have coffee Wednesday morning. But my blood pressure has dropped.

April 24, 2010 - 8:22pm
EmpowHER Guest

I am 23 years old and have been dealing with sjogrens syndrome my entire life however I have been only recently diagnosed with it. I suffer from really intensive bodily pain however I never take anything for it. One doctor wanted to give me steroid shots to help the various joints causing me pain however I refused because steroid shots have given me fat atrophy. One doctor said that the fat atrophy was due to the steroids combined with my disease however I know steroid shots in generally can cause them.

I have a very high pain tolerance because of dealing with horrible pain my whole life. I am looking into more natural medicines to help me currently. I wish all of you dealing with this my love and courage to make it through this.

March 1, 2010 - 11:01am
Expert HERWriter Guide Blogger (reply to Anonymous)

Hi Anon - Thanks for writing and sharing your story. We wish you well in your search for natural medicines and invite you to share information as you find it, or to ask questions of other members. Our best wishes to you too! Take care, Pat

March 1, 2010 - 5:11pm
EmpowHER Guest

I was misdiagnosed as having MS for 19 years - now we believe I have Sjogrens. My doc thinks my whole body pain is not common to Sjogrens patients but web info tells me otherwise. I feel pain deep in my bones. It began 3 years ago in my left thigh bone. The biggest bones hurt the worst. I am on morphine 24/7. Cold murders me. At night I wrap my legs in an electric blanket and that helps a lot. Biofreeze helps my back pain but not leg pain. My fatigue is MUCH improved since taking hydrochloroquine sulfate.

February 16, 2010 - 11:19pm
Expert HERWriter Guide Blogger (reply to Anonymous)

Hi Anon - I'm sorry to hear that you're in so much pain and on morphine 24/7. You mentioned that your doctor doesn't think you have Sjogrens. Would it be possible for you to see another physician to get a second opinion? And, is there anything we can help you with to better deal with your situation? Take care, Pat

February 17, 2010 - 5:25pm

Tina, your story is heartbreaking. You are such a strong and courageous woman -- I can tell, because you're taking care of your grandchildren, battling your illnesses, dealing with a lack of insurance and still finding time to come here and tell your story.

Can we help support you in any way? Do you need help finding medical care without insurance in Columbia?

May 5, 2009 - 9:21am
EmpowHER Guest
Anonymous (reply to Diane Porter)

thanks, Diane...i appreciate it so much. but, I do have insurance now. I went back on my husband's. It's a struggle though, because insurance for him, and me and my granddaughter is around $1,000.00 a month! And, I am not working. The bank laid off all part-time workers over a year ago, and I haven't been able to find anything part-time. I can't handle a full-time job.
I applied for Disability based on the 3 diseases I have, (actually 4 with Osteoarthritis!), but, they said I didn't work enough hours at my job the last 10 yrs. to qualify for disability!
God bless all of you ....Tina

June 18, 2010 - 4:54am
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