Lupus or MCTD? (1-26-10)

Hey Everyone! Hope everyone is doing well and getting through this winter. I recently went to UCLA for my doctors appointment. The doctor there was great and very helpful. If you have any questions go ahead and message me. I am young, but I'm willing to help those in need. Not many people with lupus like to talk about it, and personally I don't mind and I think it is good to show people that teens and children can develop Autoimmune Diseases too.

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Category:

Education

Tags:

• lupus
• mixed
• connective
• tissue
• disease
• pain
• UCLA
• bigsanfer32

[dooners2u]

I was initailly diagnosed with undifferentiated or mixed and now Lupus too. Life is difficult enough without having to go through it in so much pain. I fight everyday for a cure. I am a breast cancer survivor too. I have a channel called dooners2u so check it out. I am going to put more on my channel.

[bigsanfer32]

Wow, I can't even imagine going through all of that. I will definitely check out your channel!

[mellzie19]

I take Imuran. It suppresses my bone marrow function so I get sick easier and either from the Imuran or the lupus my blood counts can get pretty low. I used to take an NSAID, but my stomach vehemently objected to each and every one after a few weeks lol. I take a few other meds for my stomach and migraines associated with lupus and a condition called endometriosis.

[bigsanfer32]

Yeah that is pretty much how it is with the Methotrexate. You can never really win with this disease.

[ILUVHORSES1981]

Hi again, thanks for the new video! Glad to hear you are doing reasonably well, I also have MCTD it is not fun at all...my dr said it is a combination of Lupus scleroderma, and fibromyalgia...I dont know if that is really what the combo is but anyways I understnad what you are going through. I take plaquenil and prednisone for my treatments and the weight gain is the worst side effect for me! Hopw to hear from you soon! :)

[bigsanfer32]

I probably have a little Fibro mixed with the lupus/arthritis, but not sure. I seem to get pains in the fibro spots and I have really sensitive skin when in a flare. I'll have to make a video about this, it's a good topic.

[princesskris1000]

Hi, I was recently diagnosed with Lupus SLE and found your videos. Really like them :) They have been an inspiration to me. I just turned 18 and the fatigue the last few years has been horrible, having a hard time getting my Diploma but I'm a fighter and going to get it and determined to live a normal life :)

[sbasanty]

Hi I have MCTD and Polimiositis Anticardiolipin antiphospholipid antibody syndrome.

Make sure you Folic Acid it protects your liver from damage from the Methotraxate.

My drug cocktail, is Arava, Plaquenil, Topamax, Plavix, DHEA, works well and use Prednisone occasionally. The Methotraxate injections made me very ill and lowered my immune resistance too much so I had to stop.

[aurorasky73]

Hang in there sweetie. I was dx last year with it. It is a hard road but you can do it.

[imsweetestkitty]

you are a very strong and beautiful girl. I have lupus and fibromyalgia and know exactly what you are going though.

[codecherry57]

Hey... Thanks for your posting. For me, my MCTD consist of Sojgrens, SLE, and Fibromyalgia; These are the three that overlap. It feel like all Lupus... symptons are like more Lupus than Sojgrens or Fibro. negative flourense test. Sun still affect me... makes me tired.

[codecherry57]

Hi bigsanfer32: I hope you're doing well. I'm reading all the comments, and I'm getting really shaken by this MCTD thing. I was told back in 2000 by my physician after she had done some routine blood work that a had the trait for Lupus. She said that it didn't mean that I would get the disease, but she wanted me to know just in case. Then, about 4 or 5 years later I too was diagnosed with this MCTD. I didn't understand about the mixture of all these diseases!  Blown away!!!

[24Gisselle]

I took methotrexate and I lost quite a lot of weight. I was diagnosed with MCTD when I was a sophomore. My freshman year is when I was showing symptoms. I am on plaquenil, lyric, embrel(it is an injection I give myself every week once) and other meds. It is hard togo through this and not really have a lif. You have the flare ups and aren't really able to do anything such as going out with friends and having all that energy you wish you had...

[afishaswimmin]

I'm on Cellcept, cozaar (BP), metolazone (BP, diuertic), renagel (phosphorous binder), calcirtol (calcium), Hydroxyclorquine (aka. Plaquenil, idk), bactrim (prophylactic), Arenesp (blood hormone). I was diagnose age a few months before i turned 16 i just turned 19 now. I have kidney issues from my lupus. I had to stay in the hospital i had alot of iv steroids at the beginning and for about 2 years i was on oral steroids. I haven't had any flares sense that first one. but issues cuz of steroids.

[MaidNAmerica]

I hope the mtx is helping. I couldn't tolerate it, injection form, so I'm considering what to try next. I also have MCTD, but the dr is thinking it's Lupus, Sjogren's, and Scleroderma. I have Raynaud's too. Keep on hanging in there.

[sv2evs]

Someone that i know has MCTD...Take care.