Depressed and angry

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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 8/2/2016 8:02 AM (GMT -7)   
Thanks is advance for listening. I don't know where else to turn. Brief history - I have ulcerative colitis which is in remission. However, I am going for a routine colonoscopy 8/17. For over a year or so I have had extremely bad joint and muscle pain. I did have a positive ana but a low positive. Saw a rheumotologist and have been since last April. He is very conservative but has not diagnosed with anything. Since I responded very well to prednisone, he says it is inflammatory. I went on plaquanel for a while but it stopped working. I am now on sulfasalazine which was working real well. However, I have had such severe migraines since being on it. Rheumy wants me to stick it out 3 more months to make it 6 months before we discuss any changes. I also tested and have mild sleep apenia. Went to primary for a follow up. He now says that maybe being sleep deprived is causing all my problems. I am so lost and annoyed. I hate having this pain. I also get so forgetful that I do forget to tell the doctors other symptoms that I have since I didn't realize they might be related. For example, I have been getting cold sore in my mouth, have had some thinning hair, and get sick in the sun or flourscent lighting - which has gotten a bit better since the sulfsalazine. All my other blood results were fine. Any advise on what I should do next? Any words of encouragement? My husband and kids do help me feel emotionally better but they don't fully understand. I feel so lost. Thank you all in advance for reading this long post and being such a great support group!
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7558
   Posted 8/2/2016 9:55 AM (GMT -7)   
In Dr. Daniel Wallace's important book, "The Lupus Book", he indicates that most Lupus patients have an allergy to sulfa - both in foods and in medications. That may be why you are getting migraines while taking it.

Plaquenil inhibits disease progression with Lupus - so I'm not certain how one could say "it stopped working". It is probably still inhibiting disease progression, it's just that you are flaring more than it can negate. I would not advise stopping it.

Make a list of all your health issues as you notice them. Everything from sleep issues to fevers to sun or lighting issues, etc. Reactions to foods... everything. It's important to note everything - while they may or may not be clues pointing to a specific diagnosis, we aren't the experts in figuring that out -- the Drs are! I like to think that it's our job to observe & report, every day! I keep my list by my meds, and take a written list to every appointment. And that list, like my med list, goes to every Dr. Maybe it's a clue for the primary care Dr, maybe it's a clue for a rheumy, maybe it's the optometrist or the dermatologist - one never knows.

Try to avoid direct sun, particularly at midday - also avoid fluorescent lights. There is a lot of special clothing, I think it's at coolbar.com that helps if you have big issues. I have sun darkening film on my car windows - a necessity in the south!

Best wishes, let us know if we can help with specific questions!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 8/2/2016 10:52 AM (GMT -7)   
Hi lisabeans. I can't stress enough how important Lynnwood's recommendations are, especially that you stay on plaquenil. There have been recent studies showing plaquenil helps protect our kidneys. It is only the first med your rheumy will use. I started taking plaquenil over 10 years ago. I've been placed on many other meds including infusions, but always take 400mg of plaquenil daily.

I've also been seeing the same psychiatrist ever since my symptoms began. I guess most lupus patients can handle the symptom roller coaster better than I can, but I've found his help invaluable.

Keep in touch and let us know how you're feeling. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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