Really Confused

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New Member

Date Joined Mar 2009
Total Posts : 11
   Posted 4/21/2009 5:22 PM (GMT -6)   
Hello everyone,
       My name is Stacey and I have been checking out the forum for weeks now,never having the courage to write.I am very touched by the care and and support eveyone here shows for one another.Iam hoping to get a little info here on my symptoms.I am not one to discuss my issues but feel I will get the support I so need right now from you .I was recently diagnosed with Sjogrens
and my rheumy gave me Plaquenil ,but I am scared to take it I do not like taking meds.I think my rheumy also said I had Lupus but she kinda confused me on the phone.Here is how our conversation went please tell me what you think. She called and said that she was going to treat me for Sjogrens even though my blood work was ok given the severity of my symptoms she felt I needed treatment,but then she went on to say she is not surprised by the lab results because Lupus could take years to show up and since I had only been having symptoms for a little under a
year she felt that explained the lab results.So I said what do you mean Lupus I thought we were talking about Sjogrens she then just siad to take the Plaquenil and let her know if I have any problems tolerating it.So this is why I am confused about the Lupus diagnosis.My symptoms are as follows:weight loss 2lbs.a week until I lost 8% of my body weight I was already too small to begin with,hair loss ,hair is also turning white mostly around my face I am only 32,severe pain and swelling in my knees also have pain in elbows wrist and ankles,extreme fatigue not good when your a mom of 4,sensetive to flourescent lighs they give me a sunburn and I now have pigment scars all over my face also cannot tolerate the sun,swollen glands eveywhere,no tears whatsoever,dry mouth and all kind of new allergies food and meds,enlarged thyroid but thyroid function is fine,low vitamin D.Sorry for running on and thanks for listening.I hope eveyone is well today.Again thanks!

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 4/21/2009 5:52 PM (GMT -6)   

If I were you, I'd call the doctor's office and make an appointment with your docctor to discuss all of this with her in person. I believe she threw way too much at you over the phone without enough explanation.

Please go ahead and take the plaquenil. It is known to stop the progression of an autoimmune disease so if you do have sjogren's or lupus, not only should it help you feel better (after about 3 months) but I can also help keep you from getting worse. It does have side effects for the first two or three months, so you can expect to have some stomach difficulties, such as stomach aches and diarreah, but it's worth hanging in there. I don't know the statistics, but I'd guess that over 90% of lupus patients take it.

I'm going to make an educated guess. Your doctor probably "thinks" you have sjogren's or lupus but isn't ready to make a positive diagnosis. That can take years. I know it sounds frustrating, but the good news is that you appear to have a doctor who is willing to treat you before she gives you a diagnosis. It took me about 4 rheumys and over 15 years to get a diagnosis. My symptoms for the first many years were so vague that no one believed that I was sick. It wasn't until I had a bad flare that I was finally diagnosed. Now I wish that I had been taking plaquenil for all those years.

I'm glad you felt comfortable enough to post. Emotional support is very important and this is a good place to get it.

I know others will be along to welcome you. Hang in there and take care of yourself. And stay out of the sun. You should be wearing sunscreen all the time, especially when you're outdoors or under fluorsescent lights.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/21/2009 8:48 PM (GMT -6)   
Hi Stacey,
Welcome to the forum.  I don't think your doctor should have given you all this over the phone.  That's not right.  You need to make an appointment and go in to talk with her.  Get all the information and have the opportunity to ask questions. 
Your list of symptoms certainly do sound like Lupus.  I also have Sjogrens.  It's pretty quiet though. Like Pat said, Plaquenil is very common. It can take a few months for it to kick in, but if you know that in advance then it won't surprise you.
It's very natural to feel overwhelmed with this diagnosis. Any time you have a question or need some shoulders to lean on, you can count on us.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 4/21/2009 9:26 PM (GMT -6)   
Welcome. I just wanted to say hello. This is a fantastic place - everyone is so helpful and kind. I agree with the others, I would go in for a face to face chat with the doc. Make a list of questions and don't be afraid to ask everything you can think of. A lot of us take plaquenil, it takes a few months to reach full effectiveness. One thing, check with your doc about eye exams. While EXTREMELY rare, a side effect of plaquenil can be eye problems. I get my eyes checked about every 8 months or so. I have been on the plaquenil for 5 years or so and had no problems. But it's something to be aware of. Good Luck. I hope you start feeling better, soon.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 4/23/2009 7:21 AM (GMT -6)   
Hi Stacey, boy can I relate to your story. So glad you joined our wonderful support network. I'm fairly new, however. When I was very sick three years ago, no one knew what was wrong with me. They blamed my symptoms on menapause and depression nono . Finally the symptoms became so severe that I was sent to a Rheumy and she listened carefully. After my bloodwork came back, which told her very little, she called me smilewinkgrin   and told me she was starting me on plaquinil because my symptoms were reason enough. To be honest I was willing to take anything at that point to rid myself of the symptoms. I have always been big on all natural but I had to try. I have had so few side affects from the meds and they have added quality to my life. I hope they add quality to your life as well. God bless, Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Regular Member

Date Joined Jun 2006
Total Posts : 58
   Posted 4/23/2009 9:02 AM (GMT -6)   
Stacey ,
Hi haven't posted in awhile , been back on for few days , this is a great site for support , seem to come hear if only to read when flares get really bad . I agree with everyone else you should make anthor appointment , my dx took years to , but I also wanted to add , I use over the counter eye drops for my sj , becaue my sj systoms are milder , Hope they help you for now , have been on plaqunil for over 2 years , had to stop taking it a few months ago , cause hair was falling out , got really bad flares since so decided to start taking it again with folic acid , hair hasn't been coming out. I have lupus and fibromyalgia , and connective tissue diease . Hope u feel beter

New Member

Date Joined Apr 2009
Total Posts : 14
   Posted 4/23/2009 5:50 PM (GMT -6)   

It is scary being diagnosed with something you don't understand and than be asked to take medicine which may have adverse effect on you. I was in the same position some years ago. I am now thankful for the meds and am more open to the increased doses. Take courage and go see your doctor and insist on a full explaination.

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