I think these autoimmune diseases are harder predict than other diseases. There really are mild versions, and of course there are very severe versions. Two people can have the same diagnosis but very different diseases. I think your best bet is to be aware and get treated as things crop up. Has your wife been give plaquenil? That can be very helpful for keeping things at bay. Doctors really can't predict the future. I do think it is better to just worry about what you have now, and forget about things the might happen. There is a lot of research being done. There are more drugs available than there were when I was first given plaquenil 30 years ago. So there is every reason to hope for a good future.

We are only one visit and one blood test in and luckily my wife has been diagnosed with a mild form. We are trying to educate ourselves as much as we can while planning for the future which we hope includes having a baby soon, as you can imagine this diagnosis has taken the wind out of our sails and while plaqunil was mentioned we are truly at the beginning of this journey. Thanks for the input and good luck with everything.

On my second visit to the rheumy, my blood test showed improvement. I asked if I could stop taking the plaquenil and was told that was likely why my test results improved. I have researched various medical websites and asked doctors for more information. Reading the previous posts on this site has given me a better understanding of the disease. Many people here have been dealing with the effects of MCTD for more than five years. For me, the severity of each symptom fluctuates. I wish I could give a definitive answer to the question; I believe the symptoms vary in different individuals. The information I have acquired here has been invaluable.

There is no prediction possible with SLE/MCTD. You just get a rheumatolgist you feel comfortable with and whatever other support you need. It will do what it will do and nobody can predict the future. Try to research as much as you can because it's a huge help when you are dealing with doctors who don't have expertise with this disease which is quite rare. The disease affects the entire body and it comes from the immune system. I call my condition "my new normal". Still trying to adjust to it as such because it's a very different way to live. Support groups are terrific for ideas and understanding.Good luck to you both.

As well, there is always remission! I was in remission for about 25 years. No meds, no symptoms, normal life! So dont give up!
Mary Ann

Wow 25 year remission, amazing! Has anyone found relief with the natural route of treatment. I'd be very interested to hear your experiences as my wife and I are formulating our plan of attack. I've heard really encouraging things about plaquenil, I'd love to hear everyone's take on that medication since it was mentioned to us right away by our Dr.

If I had not developed side effects from the Plaquenil (and the drs are still not sure my problems were caused by the Plaquenil), I would still be taking it. It really helped me a lot with the pain and fatigue. After about 6 years or so, the risk of side effects goes up. The first few weeks are a little rough. Nausea is common. You must eat with this. eat before and after the pill. The middle of a meal is best. After a few weeks, the nausea really goes away, in most cases! It takes 3-6 months to work, but you gradually start feeling better! The problems I developed were with my heart and eyes. Heart is really rare and since I have a strong family history of cardiomypathy nobody knows if it was just me or the Plaquenil. Same with the eye issues, although eye issues are the big problem they are also rare. But they occur enough that you have to have an eye exam every 6 months. The issues I have are really not indicitive of the Plaquenil but my Dr said I have to be on the safe side. I have developed a pale granular macula and nobody knows why. When I went off the Plaquenil, the pain and fatigue came back and now I take Medrol every day in a low dose. Good luck.
Mary Ann

Hello Cgar,
Unfortunately there are no predictions how the disease SLE/Lupus/MCTD carries on, because it is all generally very unpredictable.
The best thing I ever did for myself was to observe myself and my body to learn and figure out which situations/which food etc. may cause a flare-up and then I learned to try and avoid such situations/foods etc, to keep the flare-ups to a minimum...
The diagnosis of SLE/Lupus/MCTD being a "mild case" is unfortunately not too reliable and does not mean too much, because there is no prediction as to the progress of the disease... If the doctors says it is a mild case that only means that it is a mild case at this very moment...
I wish you both good luck and all the best from Kristina.