mixed connective tissue disease

Posted by charbaby @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.

Liked by charbaby, merleyfred

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!

Liked by charbaby

REPLY
@swhitmire

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!

Jump to this post

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/

REPLY
@swhitmire

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!

Jump to this post

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.

Liked by charbaby

REPLY
@swhitmire

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!

Jump to this post

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.

REPLY
@swhitmire

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!

Jump to this post

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.

Liked by charbaby

REPLY
@swhitmire

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!

Jump to this post

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!

REPLY
@swhitmire

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!

Jump to this post

I will keep resting as there is little option,

REPLY
@swhitmire

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!

Jump to this post

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.

Liked by hayleesmom2005

REPLY
@swhitmire

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!

Jump to this post

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.

REPLY
@swhitmire

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!

Jump to this post

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

Liked by hayleesmom2005

REPLY

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

Liked by charbaby

REPLY
@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

Jump to this post

Katie, sorry you are having so much trouble. I too am fairly recent diagnosis and I started with an itchy rash on my chest from sun exposure for 20 min! That was in May and I am still getting referred around to find the right treatment. My labs show 3 different autoimmune diseases dermatomyositis, scleraderma, and lupus. I still haven’t had a rash on my face. I have a rash on my arms and my left leg. I don’t know what you have been told I assume you know “NO SUN” sunscreen is the rule. Do you feel extremely fatigued? Which disease showed up in your lab work screeening that made them diagnose you with AI? I started with my primary care and he referred me to a dermatologist, I also saw a rheumatologist and knew I wouldn’t see him again. Attitude is everything! His was indifferent! I asked for a referral to another and still haven’t seen him. My derm put me on methotrexate which is a form of chemo that suppresses the overactive immune system we are dealing with. She chose this because I can’t take anti malarials and at 61 and having already had hip and arm fractures prednisone was not a good idea. My rash is better on the metho but my skin is still real sensitive- long sleeves make me miserable. Have you had any steroids yet.? Do you have good insurance? Are you in a large city where there is medical school? I will be seeing a derm at Vanderbilt as my derm feels I need more help than she can offer. Now that’s a lot of questions but it will help us know details of where you are medically. I know one thing you need to see a different rheumatologist and definately need a dermatologisit. You will be in my prayers. What is your age?

REPLY
@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

Jump to this post

Charbaby,
First of all, thanks for being my friend and for praying for me. I will pray for you also. Prayer is what has gotten me through this experience thus far. To answer your questions: I am 51 years old. My diagnosis was based upon lab work for (ANA, Compliment tests). I have insurance through the hospital where I work (we are self-insured and I have a 2,000 deductible).I am 2 hours away from both the University of Louisville and Vanderbilt University. I had a biopsy of a hive and the surgeon did not order the right tests on my biopsy, so my initial biospy was inconclusive. I have no Rheumatologist or Dermatologist.The Theumatologist denied my case. I am still struggling to find someone who can help me or even cares to help me. My primary physician is young and new to practice. I have an appointment with him next week to dicsuss where to go from here. I am just struggling as to what direction to take. I am a Registered Nurse with a Doctor of Nursing Practice degree. I believe that my healthcare providers think that I am supposed to know what to do. I do not have a clue about this,as my degree focuses on advanced nursing care, research and education.

Liked by charbaby

REPLY
@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

Jump to this post

Katie how about we try email as i have written you an answer 3 times and each time lost it in cyberspace by doing nothing that i KNOW of. I am not a computer guru. I have lots of responses but on email we can share more personal info which will get us together. i am from Ky. Owensboro, Louisville. and Westerrn KY… Charlottern08 @ gmail dot______.I’m posting before this thing goes into spontaneous combustion!

REPLY
@katie

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was “inappropriate”. What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

Jump to this post

Katie, you okay? Hoping you aren’t on as you feel better but kind of concerned that you are down. What I suggest is Vandy unless you have docs where you are that might recommend a derm and a rheu. in Louisville. I can give you names that are at Vandy that I will be using. Still fighting for the waiver from my HMO Medicare advantage plan. Oh I want to change but only advantage plans are affordable on the disability check!

REPLY
Please login or register to post a reply.