View Full Version : Umctd
04-19-2012, 05:31 PM
My dr. told me today that I have UMCTD.....which is more fusterating because as you know its a cluster of diseases that are put together, but because i do not have enough symptoms of one disease i have to treat all of them. I was put on plaquenil. I started it today. The dr. did answer most of my questions but i have a few that i'm concerned with. How long does it take for the medicine to work? Does anyone know when some of the symptoms that I have will go away. (dizziness, tired, headach stiffness, upst stomach....) does it take weeks, days, months...the dr said I have to be on this for the rest of my life, but that it is not a cure only helps with symptoms. Will this turn into MCTD or lupus...or does this stay as is.....I have been hit today with alot of info and i was wondering what you thought. Also has anyone ever experienced white itchy spots on there stomachs before??? and broken blood vessels in their fingers from itching?
It can take plaquenil between 3-6 months to fully work. You may actually get discouraged thinking it isn't doing anything but it is, it is just slow. Most of the side effects you mentioned can be helped if you make sure to take it with food.
As for the MCTD, I know it is scary but in a lot of ways it isn't much different than getting a Lupus or other AI diagnosis. Once you get diagnosed with something they often times find that you have other AI diseases as well. We call it "overlapping" diseases. Lupus often cause issues with the skin and you need to make sure to limit your sun exposure/UV Rays (wear sunscreen and hats if possible when you are in them) and also watch what lotions and things you use. I know I have to be very careful of those because they cause skin issues for me.
Try not to "borrow trouble" as my mom would say. Don't panic over the future. Most AI diseases are not death sentences and once you get them under control a couple of maintenance medicines a day will be a breeze
04-19-2012, 06:53 PM
This is how my dermatologist explained autoimmune disease to me. He said all autoimmune (AI) diseases are, is a combination of symptoms. Consider a great big bucket of AI symptoms, each of which rarely acts in isolation. Some combinations are more commonly found together. The medical profession needed to group the various combinations together so they could study and treat them. So they put them into groups and gave them names. This is why there is so much cross-over and why some are hard to diagnose. It’s not that the symptoms don’t exist or that the person isn't sick, it’s just that they don’t have the right (or most common) combination of symptoms..yet. I don’t know if this explanation is accurate, but it made sense to me.
I first noticed the Plaquenil starting to work after about 3 months. By six months the change was much better. As for itchy rashes...I've had one for well over a year. It was my first symptom and has gotten much better since I started the plaquenil.
I hope you feel better soon. I know how frustrating and stressful doctors appointments can be.
04-20-2012, 05:45 AM
Thank you so much for all this useful info.One more question i have...my mouth has been so dry along with my lips. i'm drinking and going to the bathroom almost every 10 minutes.....how do u know if u are dehydrated....if i am does anyone know what i should do?
04-21-2012, 06:20 PM
If you're drinking all the timebecause your lips are dry rather than actually being really thirsty I would guess that its not deydration. If your mouth is really dry I would try dry mouth wash. It doesnt help all the way but it helps more than just water. You could have Sjogrens. Its not uncommon with people with AI to have Sjogrens. I have found many different AIs seem to have Sjogrens as well.
04-21-2012, 06:54 PM
You really do sound a lot like me. The good thing is that you have a doc who is willing to treat you for UMCTD, instead of having the old "wait and see which symptoms get worse" attitude. Luckily, the treatment is mostly the same for most of the AI diseases, and you're on it - Plaquenil is the first-line treatment. It will take a while, but it does help.
I get strange little sores in odd places, too. They start out red, and then have white flakes on top. I notice them more if I'm stressed or if the weather is hot.
I've had a lot less of them since being on Plaquenil.
I agree with Ritz - what you are describing sounds like Sjogren's. You might try the Biotene rinse that she suggested. The Biotene toothpaste helps too. If you still have dry symptoms, ask your doc for Pilocarpine. It really helps me to make more saliva.
I love what Brenda's dermatologist said. I've been saying it here for a while - AI diseases seem to be spread out on a spectrum, and our bodies pick and choose - one from column A, two from column B.
04-23-2012, 06:31 PM
Thank you everyone for all this useful information! I feel everyone's pain as I'm going through this as well! So frustrating not to be able to live the life that I used to have! One wonders how one day I feel great and than boom it all goes down hill. I feel as if the medicine does make it a little harder for me. Not sure if I'm having side affects or flare ups. Thursday, Friday and Saturday I could not get out of bed! Sunday and today I actually have some energy. In regards to my dry mouth I'm thirtsy all the time! I am being tested for dry eye ....but how do u get tested for sjorgens? Ty u everyone for all your help and support during this hard time. I only hope you all have a wonderful support system at home as well!
04-24-2012, 10:20 PM
I've had several tests that show that I have "mild" Sjogren's.
The ophthalmologist did the Schirmer's test. He puts little papers onto your eyes for five minutes and it measures how wet they get from tears.
My blood work showed that I had the antibodies for it - called SSAs and SSBs.
I volunteered for the Sjogren's study at UCSF. They added in a "spit test" to measure how much saliva I'm producing.
They also did a lip biopsy - made a tiny incision inside my mouth and took out a few glands. That test came back as a 1 - mildly positive.
04-25-2012, 03:57 AM
A timely discussion, I just saw an opthamologist on Monday who said I have mild sjogren's. He put some blue dye in my eyes and then examined them - that was that. After seeing all the tests Marla went through, i wonder what my rhuemy will have in store for me next visit.
The best part was I had to walk around with deep blue eyes for a couple of hours. I got some very strange looks!
04-25-2012, 08:23 AM
Than you for the responses. I am going for my third evaluation with one more dr. on wednsday. I hope i can get a handle on all this. Thank you everyone for your support.
04-27-2012, 03:55 AM
hello lynday welcome to whl family sorry i have not responded earlier we are here to support you hugs kim