UCTD/ starting Plaquenil

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Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 5/24/2013 6:44 PM (GMT -6)   
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
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2013 8:42 PM (GMT -6)   
Welcome to HW!
Although I have SLE I see we do have some common aliments (DD, Hypo).
This is a great forum for information. There is a few people who post here with UCTD that can answer questions you have about that.

Have you looked at the other forums here for your other issues? There is a bunch of wonderful people here on this site in the wide variety of forums. I visit many of them due to all of my issues.
 
As for the plaquenil you need to get a field vision test every 6 months by a eye doctor (not the kind who just does glasses). It's best to go ahead and get a beginning test now for a baseline then go back every 6 months for checkups. Plaquenil takes time for it to kick in (4-6 months). Once it kicks in you'll feel a little better and not as fatigued and achy. You'll need to be sun aware too because it will make you sun sensitive. No flourescent lights if they bother you. Some people feel ill with them because the emitt UV light.
I'm very photosensitive so I have to stay away from halogen, fluorescent, and sunlight. I even have issues with incadescent bulbs. I have LED lights in my home.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Post Edited (couchtater) : 5/24/2013 7:53:35 PM (GMT-6)


Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 5/24/2013 8:58 PM (GMT -6)   
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
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 5/24/2013 10:39 PM (GMT -6)   
Yes, UCTD flares like Lupus. In many ways it's "Lupus that hasn't been diagnosed yet"...many of the symptoms overlap and there is no one clear test that diagnoses either of them. Almost anything you read here on the Lupus forum will apply to UCTD -- obviously, even with Lupus you would want to check with your personal Dr before taking any advice from a public forum.

As for the eye exams, yes you need to get a field vision test (or just tell the ophthalmologist's office you need "the plaquenil test"), but it's now every year rather than every 6 months. (Not the guy who measures you for glasses, but the actual eye disease Dr who can do both.)

Here is some more information and a quick test you can use between visits. Plaquenil and Your Eyes rolleyes

Hope you get to feeling better soonest,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/25/2013 10:47 AM (GMT -6)   
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

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 5/25/2013 9:59 PM (GMT -6)   
This might help you understand UCTD.  It is a difficult concept to understand and is a transitional diagnosis that sometimes evolves into more concrete symptoms and diagnosis.  Like all autoimmune diseases each case is different.
 
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 6/4/2013 2:38 PM (GMT -6)   
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!
Undifferentiated connective tissue disease, fibromyalgia, chronic fatigue, tmj, arthritis, degenerative disc disease

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 6/5/2013 3:52 AM (GMT -6)   
Thank you so much everyone. It is so helpful to know I am not alone. I already had my UC diagnosis along with tons of other problems. But this is hitting me hard. I am majorly depressed. I just feel like I have so many health problems I will never feel well again. I am on so many meds. I feel so terrible. I feel like when it rains it pours and there is a new dx almost every week for me. Thank you all for being there.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 6/5/2013 9:06 AM (GMT -6)   
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))
Amy
Lupus Moderater


dialysis from lupus nephritis

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/6/2013 2:54 AM (GMT -6)   
Sorry that you are feeling so depressed and overwhelmed. I know I can certainly relate to that. I was wondering are you on an antidepressant? Most of us with chronic illnesses or chronic pain issues are on one.

Do you have someone that you can talk to on a regular basis? I know I'm currently seeing a therapist yet again. I have so many health issues, like you, it seems never ending. I've had one to two Dr appointments everyday so far this week.

Almost a month ago I was told in addition to all the health issues I have, I now have a NON CURABLE leukemia. I wasn't to suprised to hear this as my Drs have known for sometime I had something else. However, it's hard to hear those words anyway. Then to hear that most patients odds didn't help a lot too.

So I truly understand being depressed and being worried about other issues creeping up. Just keeping venting to us, we do understand and care. I'd suggest letting your Dr know about the depression and ask what they can do to help you.

Please take care and let us know how we can help in anyway. You'll be in my prayers.

Hugs,
Barbara

CHAWNIE
Regular Member


Date Joined Jun 2013
Total Posts : 30
   Posted 6/6/2013 9:07 AM (GMT -6)   
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.
Chawnie
37yrs
History: 2002 positive for antiphospholipid antibody, Ectopic pregnancy. 2005 Placental Abruption with son (lost him), after birth positive for Anticardiolipin antibody. No longer positive. 2007 gave birth to beautiful daughter. 2012 miscarriage. 2013: ANA +, RNP +

Symptoms: heart palpitations, lightheaded, fatigue, body aches, headaches

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 6/6/2013 6:04 PM (GMT -6)   
Thanks everyone. I am on a couple antidepressants. I also see a therapist. It is just hard to get in as often as I need to. I also care for my mom and between her appts and mine there is no time. I had to cancle the one I had last week because my mom had an emergency appt with one of her doctors.

I was kind of expecting a diagnosis like this because it was me who asked them to test for it but it is still just so hard to accept. My husband has been really great but he doesn't understand when sometimes I feel like it is not worth the fight. He doesn't know what to say to me when I feel that way. Plus sometimes with both him and more so his mom things are said about me not going to work. This adds to my depression.

Chawnie I a sorry I do not know what all my test results are. I know my ANA was positive and my Titer was homogenous. But if you could be dx with Lupus or MCTD then UCTD is on the table as well so far as my understanding. My understanding of UCTD is that it can have symptoms of Lupus, RA and other autoimmune so it can be difficult to tell which one. For some it will eventually turn into one of those but for others it will always be UCTD. But UCTD is its own dx. It does have some specific features.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Keslina
New Member


Date Joined Jan 2015
Total Posts : 2
   Posted 1/21/2015 2:16 PM (GMT -6)   
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 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/21/2015 11:25 PM (GMT -6)   
Lupus has a thousand faces. That's why it's so hard to diagnose.
I'm confused by your statement "I don't even feel a belly ache". Do you mean the plaquinel has helped you?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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