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Need some advice
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allie1123 posted:
Hi everyone. I just joined this forum this morning and I could use some advice from the group. My daughter who is 24 has been seeing a rhem. and she thinks she may have MCTD. She has been diagnosed with Raynauds and cold utericari (ALLERGY TO COLD) which she has had for a number of years. In addition she has a number of symptoms such as joint pain, headaches, chest pain, back pain and stomach issues which is still be looked at by her stomach dr. They did say they found from endocsopy that she has reflux. The dr ran blood tests and it came back positive and dr repeated it again since it can be false positive but the second result was the same and in addition her second test showed positive for lupus. Her dr is running other test for heart and lung and urine tests. She told her that she has 2 out of 3 indicators for mctd; she doesnt show any signs of swelling in herr joints. She presribed her medication, i dont know the name but it is used to treat malaria and i am concerned about side effects. can anyone recommend the best place to go for a secd opinion? I am willingly to travel. Thanks.
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Lupylisa44 responded:
Hi and Welcome!

I believe the medication you are speaking of is Plaquenil. Plaquenil is usually the first drug of choice by doctors when lupus is suspected.

I was diagnosed with lupus in 1984 when I was 19. I have been on Plaquenil for 27 years and have had no trouble with it whatsoever. It is actually quite effective!!! People who take plaquenil may experience a little stomach upset/diarrhea at first, but in my experince it will subside relatively quickly. Plaquenil can take a few months to start working, so one must be patient and keep taking it even though it seems like it isn't doing anything.

Getting regular eye exams by an opthamologist (not optometrist) is very important while taking Plaquenil. Plaquenil can cause damage to the retina. If caught early, the damage is reversible. This is why a patient taking plaquenil must be vigilant in getting yearly eye exams and visual field tests every six months.

Second opinions are always good and I usually encourage them, but you should let the doctor who is currently treating your daughter complete the tests and diagnostics before you rush to see someone else. That way you will have results to take with you to the second doctor. Odds are the new doctor will run the same tests anyway. If it is the medication that you are concerned about, I will tell you that any other doctor would probably prescribe the same thing. As I said before, Plaquenil is the best first line of defense used in treating lupus/MCTD.

It is difficult to tell you where to go for a second opinion since I don't know where you are,. There is, however, a physician finder that may help you find a new rheumatologist.

http://www.rheumatology.org/directory/geo.asp Please keep us posted on her progress. We are here for you and wouyld be happy to answer any questions you may have! Lupylisa
With love, with patience and with faith, we'll make our way.
 
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allie1123 replied to Lupylisa44's response:
Thank you so much for your response, We are going to wait until the other tests are completed before we go for a second opinion. I was thinking of taking her to John Hopkins just to make sure since I understand that its not an easy disease to diagnose. I will keep you posted.
 
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Lupylisa44 replied to allie1123's response:
There is a ton of good information on the right of this page under TIps or Resources section. I suggest you take a look at all the information to help you make a decision

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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redwingfan2010 responded:
I can't really add much to Lupylisa's advice for you - she armed you with great info.

I will say that I also take Plaquenil, and have since summer of 2009. I've had no problems with it and am diligent about seeing my opthamologist every 6 months.

Like your daughter, I was started on the Plaquenil prior to a solid diagnosis. All of my autoimmune blood work was normal for quite some time. When I responded to the Plaquenil, it let my doctor know that he was on the right track, that I definitely had something autoimmune going on.

I also take a second antimalarial, since October. The meds help a lot with fatigue, joint pain, etc... In my opinion, the risks are pretty low and the potential benefits are substantial.

Good luck to you and your daughter.
 
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jessi19661 responded:
For me, Plaquenil was weird. At first it helped tremendously...the Dr said too soon couldnt help yet takes months......ok
Kept taking it.......all the while geting infection after infection.....like 1-3 in 2 months!! On and on this went......then bowel infection, then GI and bathroom issues for a year!!!!!!! Finally these past few months I was ill-feeling, nauseaus, abdominal pain cramping, unbelievable amounts of gas, and bathroom troubles of all types.....OK, I determined when I took it in the AM...I was sick all day....it would finally wear off...I ate dinner and took evening dose......SICK AGAIN...........Finally STOPPED IT........ALL BETTER SINCE THEN!! bEEN 2 WEEKS OR SO.
jUST FYI


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