New to this and confused

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New Member

Date Joined Jul 2015
Total Posts : 2
   Posted 7/15/2015 9:11 PM (GMT -6)   
Hello everyone! I have been a lurker for a while and I have decided to introduce myself. I find alot of helpful information here. I have recently been diagnosed with Lupus and CTD about a month ago. I was diagnosed with Hashimoto's in Feb and MTHFR in 2004. I have been experiencing severe joint pain off and on for about a year. I feel that I received a pretty quick diagnosis. I fired my primary when he told me he wasn't even going to try to help me and no idea where to send me. I saw my neurologist who ordered the ANA and all it showed was positive. Well, I work in the medical field and had a copy of my results. I know enough to push the doctors. I found a great rheumy who ordered more test and looked at all my past test over the year and quickly came to the lovely diagnosis. I have to say I was relieved because I had an answer but felt cursed because this seems like a life sentence. I started on prednisone 5mg daily for hopefully only 2 months and plaquenil. I feel like I have new symptoms popping up all the time and don't know if it is one of the autoimmune diseases or side effects of the meds.

I look forward to getting to know everyone!! Thanks in advance.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/15/2015 9:47 PM (GMT -6)   
Welcome to the wild ride of Lupus. It has more twists and turns than a snake thinking it's a corkscrew.

It's a challenge to figure out what's causing what when your plate's full like ours.
I take plaquinel and Leflunomide because I can't take predisone continuous and allergic to mtx. For now it seems to be holding it's own.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/15/2015 10:06 PM (GMT -6)   

Along with Plaquenil and Prednisone, there are other helpful medications like Imuran, Cellcept, MTX, Benylsta, and IvIG.

Cellcept made my Lupus "quiet" (rheumies don't use the word "remission"). Many people have good results once they find the treatment that works for them.

I highly recommend:
1) lower stress however you can
2) plenty of deep restorative sleep
3) eating as healthily as possible
4) regular mild exercise

Sounds like your primary was not worth much!!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 7/17/2015 6:30 PM (GMT -6)   
Welcome to our forum alysen101. I'm sorry to hear of your multiple diagnoses. One important thing to know is that one often needs to take Plaquenil for months before it begins working. Also Lupies are often on Plaquenil for years. I've been taking it since 2005 and even with the mountain of other meds I take, I still feel ill if I forgot to take it. It has few side effects.

As for prednisone the list of side effects is long. The ones I hate most are crazy insomnia (kind of a trade off for the energy it gives you) and many of us gather movies, books, magazines, etc when we are starting a prednisone taper to make the insomnia easier; Moon Face- yep your cheeks puff up like a toad; and Buffalo Hump- this is where the area of your upper back, just below the nape of your neck, develops a large fat pad.

You may want to buy "The Lupus Book" by Daniel Wallace, MD. It has loads of info and I highly recommend it.

Oh, like Lynnwood I also don't know what MTHFR is, but I'm sure it's not an acronym for the curse word I'm thinking of, so let us know!
Please feel free to vent, tell us how you're doing, and reply to your fellow Lupies. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 7/19/2015 6:10 PM (GMT 0)   
Are you saying you have a mutation to that gene? There are many recognized, do you know what it is and how it might affect you? Never heard it mentioned in regard to lupus or any ctd.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

New Member

Date Joined Jul 2015
Total Posts : 2
   Posted 7/20/2015 3:43 AM (GMT -6)   
Thank you for the welcome!

Mthfr for Is a genetic mutation. I am homozygous so I have 2 copies of the mutation. It basically means I don't process folic acid correctly. I was diagnosed in 2004 while pregnant with my last child. I had pulmonary embolism in 2001 so they tested me. What it means is that I'm a vascular risk. I am more susceptible to a heart attack or stroke. There are a few studies out there correlating it to autoimmune diseases.

New Member

Date Joined May 2008
Total Posts : 13
   Posted 7/25/2015 10:28 PM (GMT -6)   
Hi, Im also fairly new to this board but not new to lupus. I was on Daily Strength which is also a good group. I have been managing on no meds for 7 years with mild symptomatology, all of them but mild. I get the major fatigue and overall malaise, which I would say is the worst symptom of lupus. I am considering trying Plaquenil again but it gave me muscle weakness on top of my muscle weakness I get. I would say keeping stress as low as you can, rest when your body needs to, sleep well, eat right and get mild exercise and you can avoid major flares with mild lupus. Its rough on your body if you get in the direct sun. I always wondered in the beginning of my diagnosis how I would be later in the disease course, and I would say that you begin to feel the wear and tear after so long due to being fatigued for so long, etc. Its best to try not to rest too much, get up and move your muscles so you don't get too deconditioned. Good luck.
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