[Dreamgirl11]

Hi everyone..I am new here and feeling overwhelmed with all the tests and more tests....diagnosed 3 wks ago with Lupus and now being worked up for the Mixed Connective Tissue Disease. In the meantime I run a low grade fever every day,have joint pain and break out in these lesions on my face and basically feel awful...My hair is falling out..trouble concentrating...On Prednisone 10mg and started Plaquenil 400mg 3 wks ago.Will I ever feel better?? If I even go out in the shade more lesions appear....I have never felt this bad in my life...I am so glad all of you are here and ask for your advice..I need it!!

 

[Coastiewife]

Hi there, Welcome to the site, all the people here are great at giving support and great advice. I have MCTD (as do several others around here) so if you have any questions you can ask away and I am sure somoeone will know.

 

[Katharine]

Hello and :welcome:

I'm sorry to hear that you're feeling so bad now. Getting a diagnosis is never easy and we find ourselves overwhelmed with a huge mix of feelings. On the one hand we are often relieved to finally know what was wrong with us and to be taken seriously. On the other, we are suddenly faced with a whole world of the "unknown".

It's good that you have been put on some pred to help you get through this bad patch. Plaquenil is an excellent baseline med which in the long-term will help modify disease activity and reduce the frequency and severity of flares. The only "problem" with plaquenil is that it does take a while to kick in fully - usually between 3-6 months. Your hair-loss should improve quite quickly on plaquenil (it works a little faster for that kind of thing).

Things will get better for you. A huge majority of lupus sufferers find that their quality of life improves dramatically when on medication and they can go back to a normal or near normal lifestyle.

Please remember when reading the forum that it is not necessarily representative of the general lupus population. People who post here are often newly diagnosed like yourself, looking for answers pre-diagnosis or are the rarer more severely affected.

bye for now :hug:

Katharine

 

[debatat]

Just wanted to say hi and welcome to the site. It is full of very friendly people and loads of info. Initaillly diagnosis can be very hard to get your head around and plaquenil does take a while to kick in. It does get easier though. I have been diagnosed since January and am starting to 'find my feet now'. Keep posting and let us know how you are getting on.

Take care

Deb

 

[Chris1979]

Hi everyone..I am new here and feeling overwhelmed with all the tests and more tests....diagnosed 3 wks ago with Lupus and now being worked up for the Mixed Connective Tissue Disease. In the meantime I run a low grade fever every day,have joint pain and break out in these lesions on my face and basically feel awful...My hair is falling out..trouble concentrating...On Prednisone 10mg and started Plaquenil 400mg 3 wks ago.Will I ever feel better?? If I even go out in the shade more lesions appear....I have never felt this bad in my life...I am so glad all of you are here and ask for your advice..I need it!!

Hello

Welcome, i was diagnosed last week with SLE and APS (sticky Blood), i know how you feel it seem everytime i got to see my consulatnt he wants more blood! I get the aches and pains mainly in my knees and lower back, they put me on Predisone 15mg if i'm honest things do feel better
People on here that i've spoken to are really helpful and go out of there way to give advice and support, keep your chin up things will get better, and i'n told they take less blood in the future as well!

take care

chris

 

[birder]

Hi Dreamgirl.
Sorry to hear you're feeling so bad. I wish I could tell you when this will pass but we simply never know. I do know from watching this and similar sites is that plaquenil can take months to start working. I guessing that's why the doctor put you on the prednisone, for some relief until the plaquenel starts working. If it's not helping make sure you tell your doctor. It often takes a while to find a drug or combination of drugs that works. Good luck.
Birder

 

[dixy]

hello

I to have MCTD feel free to contact me, its been 3 years now.

Once the meds start working you should feel much better.

Just takes time

dixy