Improved
6112 HealthChanged
3786 LivesSaved
3568 Lives0 lives impacted in the last 24 hrs Learn More
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,
Michelle
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment63 Comments
Hello, I have Sjogrens and I am on Plakenil. It is cheap, easy to get and insurance covers it. It is a miracle drug that works well. My flares are now shorter and less painful and more importantly I get to live my life. Pass this on to someone you know that has Sjogrens.
RAM
October 8, 2010 - 7:42pmThis Comment
Thank you for sharing, Ram. Did your doctor let you know that you need to have annual eye exams while on Plaquenil? One of the rare but possible side effects is a vision issue. It's serious but unusual, so it's very important to have yearly eye exams while taking Plaquenil.
You may know this already, but it's a good time to mention it for others. Thanks again for writing. I'm glad you are doing so well!
October 9, 2010 - 6:41amThis Comment
Plaquenil affected my eyes just enough that I talked to my doctor about going off the medicine and sticking with vitamins. I'm lucky so far, I'm doing ok. I had trouble focusing and everything seemed fuzzy.......like no crisp outline. For me, plaquenil gave some relief but was no miracle drug. But after 6 months, the effect seemed to lessen so I quit taking it.
October 9, 2010 - 6:50amThis Comment
Thanks for writing, Anonymous. That is the main issue that is possible with Plaquenil. It is rare, but can be quite serious if not caught in time. I'm very glad you caught it.
There are other meds that can be used for Sjogren's. If you are doing alright without them, that's great, but if you start to have problems again be sure and check in with a rheumatologist so your Sjogren's doesn't worsen.
Thanks for writing.
October 9, 2010 - 6:53amThis Comment
I was tested for sjogren's yesterday 9/28/10.I was don't know what to do until I get the results?? I have all the syptoms.
September 29, 2010 - 3:26amThis Comment
Plaquenil helped me both times. I took it 6 months each time. I can relate to the pain. 15 years ago when I was diagnosed, I had no use of my arms. They ached so bad and had no strength at all. The closest I can describe it ......like someone drilled holes down into the bone and pooled the hole with acid. It never went away. It lasted about 18 months. The first time, it took about 4-5 years before I felt normal. The first 2 years, Doctors said it was all in my head. Finally I was sent to a rheumatologist and she ran blood tests saying I had fibromyalgia and sjogrens. This occurred after having my daughter.
FAST FORWARD to January 2007. 6 months after having my son, I start having racing heart, panic attacks, spiked blood pressure. Then seemed to catch the flu every 5-6 weeks over a 15 month period. Then I my right arm ached. 6 months later it stopped. Then Superbowl Sunday 2009, severe leg pain that lasted a year.
My family doctor put me on plaquenil and that helped for a while then after 9 months i went off it. Then the leg pain started a couple of months later. The Rheumy said it was bursitis and gave me steroid shots. I had a bad reaction, felt nauseous for a month and the pain came right back. It was then my neighbor reminded me of vitamins for aches and pains. Her close friend has a herbal business.
WHAT HELPED.....high doses of vitamin C, D, magnesium, Bcomplex. 2-3 times a day and the pain was gone in 6 weeks. I still have trouble walking as the doctor said the muscles had weakened. So i'm doing light weights and exercising to rebuild them.
HOW MUCH TO TAKE.....????
2000mg Vitamin C
1000 mg magnesium
5000 vitamin D
with milk , morning and night
in the afternoon,
B complex (highest one I could find)
siberian ginseng
After reading so much the past 3 years, I believe Sjogren's may be part run down from stress and lack of sleep (hence after having a baby) and poor nutrition.
I remember reading a medical article theorizing that autoimmune diseases could easily be from vitamin deficiencies. And VITAMIN D deficiency is becoming an epidemic again like it was a century ago. Google it.......UK has a return of rickets and other illnesses due to Vitamin D deficiency.
PLEASE TRY THE VITAMINS. YOU AREN'T OUT ANYTHING AND THEY AREN'T DANGEROUS. THE ONLY SIDE EFFECT MIGHT BE DIARRHEA AND THEN YOU CAN CUT BACK ON THE VITAMIN C OR MAGNESIUM.
And I don't buy the expensive brands. Walgreens had the best B complex I could find with higher concentrations. Walmart has plenty of cheap vitamins as well.
[email protected] if you would care to chat more.
September 29, 2010 - 6:41amThis Comment
Thank you for sharing this advice. I hope readers will keep in mind that you can get too much magnesium and/or B vitamins, so it's a good idea to discuss this with your treating provider first. Hypermagnesemia is not super common, but it can cause irregular heartbeats, so you don't want to over supplement. Too much B vitamin can cause neurological symptoms.
These supplements may help you, but it is a good idea to check with your provider and then be sure to mention it if you have any side effects.
September 29, 2010 - 6:52amThis Comment
That is very true. I was desperate and did not want to see any more doctors that made me feel like it was all in my head or that a simple shot of steroids should fix me up. I did research online with medical articles.
I believe I halved the magnesium to 500 mg in the morning and night.
The vitamin C was from research and a homeopathic doctor suggesting that autoimmune disease depletes the adrenals or causes them to dysfunction.
Vitamin D.....plenty of research showing you can take 20,000 units without harm but I stuck with 5000 twice a day.
By week 4 there was such a noticeable difference in pain and sleep that I cut back on vitamins. Now I just take a One a Day for 50+.
It is amazing it worked because the pain was unbearable and pain killers from the doctor didn't even help. Sleep was impossible. I tried this because I figured I wasn't out anything.
September 29, 2010 - 7:00amThis Comment
I was tested yesterday 9/28/19 for sjogren's.I have all the syptoms of it.I just don't know what to do until I get the results??
September 29, 2010 - 3:20amThis Comment
I just turned 25 this month. I was diagnosed with Sjogren's and Hashimoto's thyroiditis about 6 weeks ago. I have excruciating pain all over, in my muscles and in my joints. I can only stand for maybe 10 minutes at a time, and walking is quite difficult for me. Before I got sick, I worked in attractions at Disney World and I was on my feet 8+ hrs a day. I am being accommodated and I will be placed in a position where I can sit most of the day. I have only a little saliva in my mouth, and choke often while eating. My eyes burn and I get frequent eye infections. I can no longer wear contacts, which I have worn for over 11 years. My nose is extremely dry, I get constant nosebleeds. I have a Vitamin D deficiency. I keep gaining weight. My skin is dry. I have a persistent cold sore in the corner of my lip. I have trouble sleeping, and trouble waking up in the morning, I feel as if I did not sleep at all. My hair is brittle and breaks easily. I have panic attacks and depression.
September 8, 2010 - 10:28pmThe doctor wants to put me on Plaquinil, and I think I need it, but I am worried I will never be any where near close to what I was. I am only 25. Any suggestions?
This Comment