UCTD/ starting Plaquenil

I finally got my dx today. I have Undifferentiated Connective Tissue Disease. I hope it is ok if I post here. My Rhemi said it is like Lupus without the organ involvement. I am starting Plaquenil today. Can anyone offer any tips, advice, words of wisdom, or anything? Thank you

Thank you very much. I do use the other boards. I am on the chronic pain board and UC board mostly. I stop in on a few others as well. I have another question for anyone who might know. Does UCTD have flares like Lupus and UC or is it an all the time kind of thing? Thank you

I don't have much to add - Lynnwood and Joy have given great info and advice - but I also have a diagnosis of UCTD, and I think there are a few others on this forum. We have many of the same problems and issues and symptoms that go along with Lupus.

I have lot's of muscle and joint pain, fatigue, low grade temps, trouble sleeping, esophageal problems, and a fair (or unfair!) amount of time just feeling crummy, - kind of like you're about to get the flu, have the flu, or just got over the flu. I have to manage my energy output - this was a life changer, and took some time to sort out. I have learned to organize activity with rest periods, and I try not to over-do based on current symptoms Some days are better than others. l also am very sun sensitive and extended exposure can cause a flare up. Took me a long time to figure that one out - always thought I had worked too hard in the yard or walked too long or whatever, when really, it was all about the sun time. As Joy said - sometimes even fluorescent light exposure will trigger problems. Brain fog is sometimes an issue - days I just can't "get it together" or focus well. On bad days - I don't want to even think about driving. Symptoms vary for everyone, as do frequency and severity of any and all symptoms.

Plaquenil helped me quite a lot - especially in the fever and fatigue department. I also learned I had Celiac a couple years ago and going gluten free has had a positive impact as well on some of the symptoms. I am also extremely fortunate to have a neuromuscular massage therapist who is an absolute genius, and given me considerable help with chronic pain. I also have fibro and through the years have had other massage therapy that was not at all helpful and sometimes hurtful so I don't necessarily recommend that, I just finally got really lucky. Other anti-inflammatory and pain meds help as needed, but I try to use them sparingly.

So - as already advised, get a baseline eye exam by an opthamalogist - my rheumie wouldn't let me start Plaquenil until I'd had one. I've had to go back every six months - but some go yearly. Watch your sun exposure and wear sun block on your face and exposed skin when outdoors. Eat as healthful a diet as you can, and get adequate rest/sleep. I hope the Plaquenil will give you some relief and you'll feel better soon!!!

Lucy

Welcome! I also am dX'd UCTD, fibrao, degenerative disc disease with instability, arthritis, bursitis, TMJ, IBD, nerve damage, carpal tunnel....the list just keeps growing. I was on Plaquenil and didn't do too much for me. We realized this when my dr started to wean me off the pred. He switched me to Aralen (chloroquine) hoping it would be a little stronger for me.
I'm a sun worshipper ...sit by the pool for hours. I think this year is going to be different for me though. Sat out there this weekend and now I'm covered in a red itchy rash and feel like I've run out of gas. I'm sluggish and exhausted and achey and foggy headed.
I read your other post about getting hubby and others to understand....impossible! No one lives in your body except you. They don't put people on these kinds of drugs for the heck of it. People will eventually "get it". Until then it's their issue not yours. Yours is taking care of yourself so you can function like a normal person. I went through the same thing with hubby and others. He gets it now...thank GOD! There's definitely a mourning process that I have gone through and prob still am to some degree, regarding the changes in my life that this disease has caused. It is what it is I guess so ya gotta work with it and make the best of it...especially on the days that you feel good!

Hey there! Can you talk with your doctor about your depression? Studies are showing it is very common in these type of illnesses, they can run hand and hand.

I had the same feelings when I had a life changing moment about 2 years ago. I wallowed in my self pity but then I realized I wasn't doing anything good for my body. Try to focus on the good days. Not on the amount of pills you are taking but by taking these pills will allow you to have some good days. I agree, when it rains it poors. When you start having these feelings, throw in a good movie you find funny, watch funny youtube videos, to even joining someone in the chat Healing well provides and talk out your feelings. You are more than welcomed to email me as well! Its not easy to do this, take baby steps and hopefully they will help! ((Hugs))

Just curious: what test came back positive for them to diagnose UTCD? I have similar symptoms. I was told with my + ANA and RNP that it is the front gate to Lupus or MCTD. Is UTCD almost the same? Sorry I am new to all this and worried.

Hey, I am surprised with the links of other diseases that can run along with Lupus. For years and a bunch of different Doctors, I finally found out that it is lupus for sure and now I am flipping out because I never knew about the common complications of the disease. People can look it up and it will list symptoms       like: Fatigue, red rash, joint pain, and other issues that can come with just having the flu. Now I have cold fingers and cold feet and horrible chest pain and red eyes. Does anyone else have these issues and since my dr. isn't really going into detail, is this bad? I just started taking Plaquenil and I don't feel anything. Not even a belly ache. My ANA test came back positive and since I know, it doesn't matter how high or low it means, just being positive with speckle nuclear and sm or sa test positive can mean Lupus, but what if the complications are starting to rear their head thus causing life to become debilitating. Can other diseases make lupus worse? or could treatment for lupus cause other disease to go haywire? I also wish I was smart enough to fix everyone and make everything better. I seriously can't stress enough how rough it is to play the waiting game with doctors and tons of blood test and who knows? maybe waiting for tests instead of going by symptoms could have prevented anyone or me from experiencing these issues.

I have Endometriosis/hypothyroidism/P.O.T.S/Fibromyalgia/s.l.e LUPUS