Saturday, January 16, 2016

Being a Newbie is Hard

I'm sorry that it took me so long to respond to Sjogren's Newbie's questions after I was asked a few times. My excuse for being so delinquent in my answer is.....um.....that....um......I HAD TOTAL KNEE REPLACEMENT SURGERY. Wah! Wah wah!

What?

You say that my surgery was over a month ago and that I should just get over myself?

Busted. It's true. See how AWESOME my knee scar looks?


Her questions are difficult ones to answer. Perhaps that's the real reason that I've not attempted to answer them before today. I'll give it a shot but please chime in if you have additional information:

Sjogrens Newbie said...
Any thoughts on a tie between auto immune diseases and birth control pills? Or the possibility of getting Sjogrens after changing birth control pills? 
Also any tips for someone with Sjogrens who because of their anxiety can not sleep. I'm struggling. How can I get the amount of sleep/rest someone with an auto immune disease requires if my anxiety won't let me nod off. It's like my body is afraid that if I fall asleep I'll die - so it wakes me up with a fright every time I get close to drifting off. Dr has put me on Zoloft but I've only been on it for a few days so far. What do I do?

Regarding Sjogren's and birth control pills? 

Here's the long answer: 

Relationship between hormones and autoimmune disease is complex and like almost everything related to causative factors in Sjogren's syndrome, needs more study. Most researchers agree that sex hormones affect our immune system but there is much more to be learned. The different sex hormones each have demonstrably different effects on autoimmune cells, read this and this.

I couldn't find much recent information that looked at the use of birth control pills and Sjogren's specifically, however I could for a few other autoimmune diseases. For Lupus patients, recent studies seem to be conflicting with older ones, specifically those that study the effects of OCs and flares of Lupus (another autoimmune disease) activity. It was previously thought that Lupus patients should never be prescribed oral contraceptives to avoid increased autoimmune disease activity, more recently after new studies were reviewed, stable Lupus patients who meet certain strict criteria may use OC safely according to Michelle Petri, MD, a rheumatologist at Johns Hopkins University School of Medicine in Baltimore, Maryland and Jill P. Buyon, MD, a rheumatologist at the New York Hospital for Joint Diseases in New York City.

There is some evidence that the use of oral contraceptives and menopausal hormone therapy may increase the risk of inflammatory bowel diseases such as ulcerative colitis and Crohn's disease. Read this. 

Here's the short answer:

Maybe. Maybe not.  More research is needed. Yes. This is a very unsatisfying answer, I would agree.

Regarding anxiety and sleep and Sjogren's?

A recent diagnosis of Sjogren's syndrome can indeed cause sleep reducing anxiety. I recall many sleepless nights early on after I learned of my autoimmune disease. But take heart and take time to breathe. Just breathe. You and your doctor will find your way through this. It appears that you must have confided in your doctor regarding your anxiety since she/he prescribed Zoloft (sertraline hcl) for you. This information about Zoloft was found on WebMD:
This medication may improve your mood, sleep, appetite, and energy level and may help restore your interest in daily living. It may decrease fear, anxiety, unwanted thoughts, and the number of panic attacks. (Bolding mine)
While the effects of this medication can be very helpful, one needs to have some patience after beginning to take it since it may take from two to six weeks before you may feel it's effects. So hang in there. And be sure to remain in contact with your physician if you feel as though this medication isn't right for you.

In the meantime, please know that you're not alone. Visit Sjogren's World Forums to post your questions and connect with hundreds of other folks dealing with Sjogren's. It's a great way to find support and answers. My user name there is Annj5, so if you see me, say hi!

When you read Reasonably Well from a non-mobile device, you will see a left sidebar that has links to many other resources for Sjogren's patients. Take a look.

Hugs.

6 comments:

Nicole said...

Hi Newbie,

I'm sorry that you're going through this. Sleep deprivation is a horrible thing! I hope that you can find the help you need.

About birth control... I already had Sjogren's and tried going on the pill to deal with bad period symptoms. I was only on it for a week, it made me so sick. Then I went into a flare. It was the worst flare I had had at that point and I do think that the pill was involved. That is just one person's experience, however. Yours may differ. The info Julia presented on Lupus is intersting, however.

Anne George said...

My Mother was born in 1926 and she had Lupus. She had never used any type of birth control pills. I have been diagnosed with Sjogren's and Lupus recently. I had it for many, many years and was not diagnosed until I changed Doctors. From all the articles that I have read on autoimmune diseases, it seems that women are at a greater risk than men, and if your Mother had/has the disease your chances of having an autoimmune disease are quite high.

Newbie said...

I'm so sorry - I didn't mean to be pushy or demanding. I just didn't know if anyone sees questions on older posts.

Julia Oleinik said...

Oh Newbie! You are NOT pushy or demanding! Your questions are excellent. I was just making fun of myself for being such a lazy butt in answering your question.... I tend to milk excuses such as surgery for as long as I can, haaha. Ask anything you want. Sorry Ali didn't make myself clearer.

Tana said...

Hi Newbie! I'm convinced that birth control pills were what set off my lupus (my first AI disease). When I was 15-16, I went to the doctor for heavy periods. His solution was to put me on birth control pills. Back in the '70s, the pills were high in estrogen. It was after that when all of my symptoms began. I have also noticed a correlation between my estrogen levels and disease severity. It's only anecdotal - my story - but it's also a theory. I suspect we don't all have the same trigger, but that estrogen can be one of them.

Carol said...

I must agree with the connection between hormones and Sjogren's. When I was pregnant with my youngest at age 34, I noticed my parotid glands were swollen. I thought it was just a pregnant thing. I was officially diagnosed when my daughter was 1½. I'm pretty sure I already had Sjogren's when I was pregnant, and maybe it was even the cause.

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