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charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011

mixed connective tissue disease

Posted by @charbaby, Aug 26, 2011

I have been diagnosed in the last 6 mo. first the labs came back lupus, speckled. No typical butterfly rash on face. The rash was on my chest where I was briefly exposed to sun. I am olive skinned never even had a bad sunburn! They did steroids and that didn’t help. Referred to a derm who did a biopsy of the area involved that came back dermatomyositis, scleraderma. Now the chest rash is gone and I have both arms covered in a raised rash, tissue is broken down on the right arm. Infection set in and I can’t describe the miserable itch. Anyone out there that has anything like this nightmare! I am on methotrexate.

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swhitmire
@swhitmire

Posts: 6
Joined: Sep 02, 2011
Posted by @swhitmire, Sep 2, 2011

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot…and i hope it will help you!

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charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 2, 2011

Thanks for replying! I was a nurse for 30 yrs and yet feel dumb as dirt on this issue! I am currently on 20 mg of methotrexate once a wk. I won’ t pass a window without sunscreen! Heat seems to be as bad as the sun. Nothing on the outside of my body looks like scleraderma but they haven’t gotten to the catscans etc to see if there is evidence on my organs. My rash is more typical of dermatomyositis and is improving on the meth. I am still looking for the right docs, trying to get insurance to pay for out of network MD’s that are at Vanderbilt. They are more open to the rare diagnosis. My derm is lovely and has diagnosed and done all the treatment to date as I did not like the rheum. in my network. It is reassuring to know there is one more person out there with mixed CTD. How are you after 15 yrs? Does the fatigue ever get better.? The rash is slowly responding to the med. but just taking a bath is unbelievably painful to my arms. Where rash is gone looks like acne scarring . Thanks again hope we can continue to communicate, this stuff really gets you down and feeling alone. You were my only response/


swhitmire
@swhitmire

Posts: 6
Joined: Sep 02, 2011
Posted by @swhitmire, Sep 2, 2011

Since i have been sick i have spoken with hundreds of people and have learned a lot from conversations with them. You need to know that different doctors will diagnose you wiith different auto immune illnesses. i call this the yes/no/yes/no diagnosis!! A lot of times they get grouchy when you ask and make comments.I had one doctor who never told me what he thought i had, and when i changed doctors i read on my records that he diagnosed me with crest/scleraderma. It made me mad.
Enough of my gripes about my docters not worth a darn.I’v had a few good ones….that wound up leaving to take other jobs and you know the rest,
I can tell you what i do and many other people like us do.Sometimes i get so tired that i cant even get up to do anything..Its not a normal lazy like most people that are tired have. At first when i did this i really thought i was going to die. It was that severe.It comes and goes. iv learned that if i am going some where , i have to rest first and kind of build up my strength. Another thing is any kind of stress or even something happy like going on vacation or planning an event, takes a tole on me.The Sun Is My Enemy is a book about lupus that is very helpful. I think i read it about 10 times. Its bad enough to have this illness, but its even worse with all the problems associated with the doctor problem!!!!! I get rashes every once in a while and my doctor ups my prednisone. Before i started taking my meds is when i got really sick. i take about 10 medicines…itx funny, that i dont have a problem with my dermatolgists either… hes a sweet heart and diagnosed me right off…Right now i am in the process of finding a new rheumatologist, and my internist is treating me.

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charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 2, 2011

I can’t take prednisone very often, I have osteoporosis and have broken my hip at 57. I can’t take placquenil as it has quinine in it and I am allergic to that. It seems methotrexate (chemo) is the drug of choice for me. It is really hard to explain the “tired” one feels with this stuff. I thought it was going to be a day to get some things done today but here I am propped up in bed, exhausted. I want a remission. My life is on hold! The celexa isn’t helping the depression I experience as much as I would think. Next week it will be in the 70’s which is great in TN but the sun will still shine and I
can’t convince myself this will get better.


swhitmire
@swhitmire

Posts: 6
Joined: Sep 02, 2011
Posted by @swhitmire, Sep 2, 2011

Keep resting untill you feel rested up, no matter how long it takes! You will know when you can get out of bed!!! I take welbutrin for my depression. no complaints. also have rheumatoid arthritis and only take 5mg of prednisone..when i get worse doctor ups my doseto 20 or 30mg for a while, then go back to 5mg. Everybody is different. placquenil i took for a few years and decided it wasnt doing any good. Quit taking it. I take flexerill(2 at night) to sleep, hydrocodone for pain, cyclobenzaprine(2 at night) for muscle pain. protonix (2 a day) for acid reflux, Do you have knee problems?? I had both knees replaced. B-for i got sick i never had to take medicine. But the best thing i can say is that when my meds got all worked out,,,,my health got a heck of a lot better.

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charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 2, 2011

My med, history is congenital scoliosis, a split spinal cord ( had split in two down the middle and a tumor Benign was diagnosed in 2002 on the right side split. I had a great neurosurgeon who resected it as much as possible and I couldn’t walk well after the surgery. I eventually got out of the wheelchair and on a walker then cane, then pretty much walking on my own. MRI showed it increased in size and I had a special kind of radiation therapy to kill the DNA in the tumor so it wouldn’t grow. All this fell in the “never seen this before” category. I don’t have RA at this point. I have numb left foot and can’t urintate on my own so I cath 4 times a day. Now I get another thing Mixed connective tissure disorder, also rare. I want to get something normal!


charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 2, 2011

I will keep resting as there is little option,


charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 5, 2011

Have you ever taken methotrexate (chemo drug)? I am on 25 mg. and they raise it every week after reveiwing my labs. My skin on arms looks better this week but I have been in bed since the last dose last Tues. It is now Monday and tomorrow is the day I dose again. I think it is the chemo making me feel so bedbound at this point as today is much better. My knees are okay, really affects my muscles more than joints, my skin on my arms feels tight and muscles are weak. You can email me at charlottern08 AT gmail dot com. Thanks Charlotte.


swhitmire
@swhitmire

Posts: 6
Joined: Sep 02, 2011
Posted by @swhitmire, Sep 5, 2011

You sound like you have had your share of illnesses! I am sorry to hear this. I dont take mexotrexate. Why? Maybe because my meds are working ok right now.Over the years i have had to change and try a lot of meds. My fingers used to be real tight and have always been in pain. They are back to normal. my feet and knees are real tight.My body is starting to be very stiff. i cant bend or lean over or get anything from the floor. I was just diagnosed with rheumatoid about 6 months ago. Wierd huh? My whole body aches. My muscles and my bones This scleraderma can make you lifeless…I forgot to mention that when i take aniibiotics it makes me sick and weak, like i have the flue bad. Some times this puts me in the bed….I am having alot of trouble with candida of the mouth. I cant seem to get rid of it totally. It gets better and then starts back up. The doctor said its because of the sjogrins. It has attacked my moisture producing glands and my mouth nose and eyes are dry….I dont like taking prednisone because i read it makes your bones brittle, but my bones messed up before i ever took any predicsone. It also can cause lymphoma….Scarry…
I dont know any body else with scleraderma except you.. I know a few people with lupus though…..I am like you…Its nice to talk with someone who understands your illness.. I have 8 brothers and sisters….They think i have a lot of differnt things wrong with me. They cant comprehend its all one thing…scleraderma. They are like talking to a brick wall.None of them have illnesses.. I am a hard worker, i am not a lazy person, so it took a long time for me to realize i cant beat this stuff, that i work around it. I do things when i feel well and dont do anything when im tired..You have to give in to this illness and take care of yourself or it can make your life miserable or worse shorten your life.


charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Sep 5, 2011

You don’t have just one thing when you have mixed AID, You have an army attaching from all sides! I was a nurse for 30 years and never knew a thing about this stuff! Sorry about your mouth, I guess you use majic mouthwash and Biotene spray? The biotene is a lubricant for the mucous membrane that helps hold a bit of moisture. I am on folic acid every day I don’t take the methotrexate to prevent mouth sores but sojurns is different. I have fought physical battles all my life and will do what I can with this. I am a believer in Christ as the Great Physician and I’m sure giving him a shot at this. I don’t know about your faith but Job, the Bible character, was allowed to be tested and had horrible sores all over his body! I joke with friends that I think I know Job had an autoimmune disease or 2! Sometimes you just have to see the humor. I have lots of support in my world, you are the only one who is walking the same kind of walk but 2 of my kids are nurses and my sis is a nurse so they do recognize this for what it is-pretty awful. Hope you have a glimmer of comfort today. Charlotte


bobthebuilder54
@bobthebuilder54

Posts: 6
Joined: Oct 12, 2011
Posted by @bobthebuilder54, Oct 12, 2011

Hi, I am new to this forum and have enjoyed reading all of your posts. My story is this, Hives for about six months on back side of my body, then rashes on my upper chest, eye lids, hands looked like poop, could not button or pull up my pants dx with photosenstivty, by a dermatologist, then got Raynauds then went to a rhuemy who dx me with Scleroderma, then four months said UCTD (mixed), reflulx,then sent me to a neurologist who now says I have neuromuscular involvment, ( Progressive muscle disease and neuropathy). I have autioammune hypothryoid. Autioammune microscopic colitis, hypertension, just to hit the high lights. LOL. you have to laugh right? Well I am on my way to a specialist and Northwestern in Chicago. for neurology. My neurologist wants a second opioion. She org, wanted me to go to Mayo but my ins wont pay.I have very bad balance problems, I walk like I am drunk. My legs are so weak, I can only do a little and then have to sit, for an A personality this is the hardest. If I do get a good day and do alot I pay for days later. I also get mouth sores, but have not been dx with schroegen (spelled wronG) sorry, but I am sure I have that tool I have had dry eyes for ever, the mouth, vagina area for a while. There was a time I lost all my hair off my legs, under my arms, on my arms, on vagaina area, this was weird, but now comming back. I feel that one of the hardest things about these dx is when they keep changing them on you. I was tested three years ago ANA postive speckled pattern and has tested postive since. I am so tired all the time and feels like I am dragging a hundred pound weight on both legs. Hard to explain to people. My neurolgist told me in June to quit my job, that was a shock, I had been pushing myself for so long, it became normal but she was worried that I needed to rest and take care of myself. So have been home since July of this year and this is weird too.
Do any of you have problems with colits? I have been in a flare for two months. I do not want to start on steriods but I may have too to get it untder control.
Well thanks everyone for listening to me, and I amso glad I found you all.
Susie


ahrrsnh3
@ahrrsnh3

Posts: 2
Joined: Oct 29, 2011
Posted by @ahrrsnh3, Oct 29, 2011

Wow… thank you to all for sharing this information. I am just starting down the road on dermatomyocitis. My 4 yr old has been recently diagnosed. We are currently seeing a rheumotologist and getting ready to start treatment. They are suggesting a EMG to be done next week to see how muscles are reacting. I am terrified, there seems not to be a whole lot out there this disease and we are getting so much thrown at us at once. It seems they really dont know a whole lot about the disease. I see that some of you test positive on the ANA test, my little guy did to… What does this mean? Thanks and good luck to each of you. I will be praying for all of you on this post.


charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, Oct 29, 2011

It is tough to deal with for an adult, mom’s I can’t imagine when the “wolf.” as it is often referred to on the board. attacks your child. On the bright site they learn more and more about AI which may help your youngster. Dermatomyositis is my current issue and I have had rash on my arms, chest, and left leg. I am, so photosensitive Wal-mart has become my enemy with all the bright flourescent lights. I have to wear a hat and sunglasses in there. I paint my entire body with sunscreen before going anywhere. I don’t even trust cloudy days as my mother used to tell us “you can get a burn on a cloudy day.” Don’t worry about learning everything at once. If you have an Autoimmune Disease all the treatments and labs and tests end up being pretty much the same. My only suggestion is to add a really good dermatologist to you specialists. See what the rheumy thinks of that. I started with derm and see a rheum end of the month. OK testing the ANA is test one when an autoimmune disease is expected. Many people don’t test positive for months or years after symptoms start. I had an ANA 1:11280 when my Primary Care doc had me tested with the first rash. I know my muscles are being affected by the dermatomyositis but I keep doing some arm exercises. Don’t hold your little guy back, if he doesn’t feel like doing something he won’t. I still haven’t had an EMG, rheumy may want one. I like what my daughter always asks.”How will this test or procedure affect the treatment plan?” She is a nurse better one than I was! What we have is rare and frustrating but we can get better with treatment. Keep us posted.I have been fighting this since May10 when i had my first rash. Probably had flares with fatigue before but I thought it was other stuff. Good Luck and keep us posted. I bet you find another mom of a young child soon.

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charbaby
@charbaby

Posts: 16
Joined: Aug 26, 2011
Posted by @charbaby, May 22, 2012

Susie how did it go with the consult in Chicago? Are you on a treatment plan that is improving your situation?


Tigerlilly
@tigerlilly

Posts: 3
Joined: Apr 01, 2012
Posted by @tigerlilly, Aug 1, 2012

I have sjogren’s syndrome, raynauds syndrome, photosensitive, depression and anxiety. sjt2925@gmail.com

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