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Old 07-26-2012, 06:55 AM   #1
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Is it Dermatomyositis?

Hey,

I am a 30yo female who has been suffering with some sort of autoimmune/connective tissue disorder for 2years and 8months. I have seen a multitude of dr's and have had millions tests in that time. After some dr's thinking I had a 'post viral phenomenon' or fibromyalgia; I started a journal of my experience, tests, symptoms etc which in itself was therapeutic as I felt like I was going crazy. Having said that, my GP has been there for me the entire journey and I owe my sanity to her! I finally found a Rheumatologist that actually listened to me and took note of my symptoms, of whom I still see today. She initially thought Lupus or RA - but is now not so sure about those two; hence 'undifferentiated connective tissue disorder' - which I can live with for now :-) I am on Methotrexate, Azathioprine, Prednisolone, Plaquenil, Nexium, Inderal, Sifrol, Endep and Folic Acid....and that doesn't include my PRN meds!!!

I wont go through all my symptoms individually but its basically joint pain (small joints) lethargy, low grade temperatures, rashes on knuckles and finger joints, difficulty swallowing (choking on food) and migraines. On treatment these syptoms are well controlled but I am on some pretty heavy duty drugs and high doses.

My bloods have always shown obscure results - my ANA is sometimes positive (weak) and sometimes negative, other antibodies negative, high eosinophils on/off, CRP ok, CK has been elevated once only, Anti CCP elevated.

As I am weaning down my Prednisolone (been on for 13months, started with 50mg and now on 7mg) some symptoms are returning/appearing like lethargy, browny/purple-ish colouring on eyelids, a new symptom of right hip pain and splitting of the skin at the tips of my thumbs, index and middle fingers....no matter how much moisturiser I apply.

I would truly love your opinions/suggestions so go for your life!! I suspect it may be Dermatomyositis????

Regards, Sarah

 
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Old 07-26-2012, 09:38 AM   #2
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Re: Is it Dermatomyositis?

Sarah,
I am so glad you have a good rheum. These autoimmune disorders can be baffling, and I think her diagnosis for the current time is very reasonable. UCTD is a diagnosis, as in that condition you have features of several different autoimmune diseases occuring in "overlap". Used to be called "overlap syndrome". The blueish discoloration of eyelids is characteristic of dermatomyositis, as are the CK elevations, which can get into the thousands for some people. I wonder about your difficulty swallowing, if it is due to extreme dry mouth /throat, suggestive of Sjogren's, or more esophageal, like food getting stuck in your chest. A barium swallow or scope and biopsy can evaluate the esophagus for signs of scleroderma, as well as the SCL-70 blood test. Sjogrens will sometimes cause SS-A and SS-B antibodies to be positive, but can be treated symptomatically. The knuckle rashes fit with DM and the skin cracks occur in lots of AI conditions, especially with Raynauds. Blue knees occur in DM, esp. after showering. Trying to pin this down to a specific single condition is not necessary and it seems you are on aprropriate treatment. People with UCTD often have high RNP antibody levels, so that would help confirm your rheum is on the right track and your diagnosis of UCTD is correct.

 
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Old 07-27-2012, 03:36 AM   #3
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Re: Is it Dermatomyositis?

Hey, thanks very much for your reply I have not ever really looked at it from that perspective and I think you are right - I think the reason I am always looking for a specific 'name diagnosis' is because people are always asking me how I am and have they found out what is wrong with me!!! I really appreciate that people care though

I also know how lucky I am having a great Rheumatologist....there are some shockers out there!!!
Thanks again, great to hear other people's thoughts xxx

 
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Old 09-08-2012, 02:28 PM   #4
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Re: Is it Dermatomyositis?

Two years ago, I was diagnosed with dermatomyositis, confirmed by a muscle biopsy of my right deltoid. At that point, I was a quadriplegic, unable to lift my head, legs and arms. My neurologist prescribed prednisone, 60 mg. daily, along with imuran, 50 mg. 3 x daily. I am still on the same dose of imuran, but my prednisone is now 12.5 mg. every other day and I am no longer a quadriplegic or walking with an assistive device. My daughter is a PharmD and she monitors my meds because she doesn’t want me to be over-medicated.

At the peak of the disorder, I suffered from extreme itching of the neck, ears, armpits, breasts, and groin. Antifungal creams helped alleviate the itching. Based on what I have read from others diagnosed with dermatomyositis, it appears that we all have a wide range of symptoms. Have you had a biopsy to determine if you, in fact, have dermatomyositis? By the way, I also had difficulty swallowing and always kept water close by in case I started choking. As I started improving, the problem with swallowing disappeared.

My CK levels have never been that high; however, my doctor places more credence on anecdotal data, which has worked well for me. Although my steroid level is lower, I am not feeling any recurrence of my symptoms although I do have permanent muscle impairment, thus, affecting strength in my hands.

What does your diet look like? If you are not doing so already, you might want to consider natural remedies such as antioxidants and foods to reduce inflammation. We also must reduce stress in our lives (easier said than done). Hang in there and maintain a positive outlook.

 
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Old 09-08-2012, 02:32 PM   #5
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Smile Re: Is it Dermatomyositis?

Two years ago, I was diagnosed with dermatomyositis, confirmed by a muscle biopsy of my right deltoid. At that point, I was a quadriplegic, unable to lift my head, legs and arms. My neurologist prescribed prednisone, 60 mg. daily, along with imuran, 50 mg. 3 x daily. I am still on the same dose of imuran, but my prednisone is now 12.5 mg. every other day and I am no longer a quadriplegic or walking with an assistive device. My daughter is a PharmD and she monitors my meds because she doesnít want me to be over-medicated.

At the peak of the disorder, I suffered from extreme itching of the neck, ears, armpits, breasts, and groin. Antifungal creams helped alleviate the itching. Based on what I have read from others diagnosed with dermatomyositis, it appears that we all have a wide range of symptoms. Have you had a biopsy to determine if you, in fact, have dermatomyositis? By the way, I also had difficulty swallowing and always kept water close by in case I started choking. As I started improving, the problem with swallowing disappeared.

My CK levels have never been that high; however, my doctor places more credence on anecdotal data, which has worked well for me. Although my steroid level is lower, I am not feeling any recurrence of my symptoms although I do have permanent muscle impairment, thus, affecting strength in my hands.

What does your diet look like? If you are not doing so already, you might want to consider natural remedies such as antioxidants and foods to reduce inflammation. We also must reduce stress in our lives (easier said than done). Hang in there and maintain a positive outlook .

 
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Old 09-27-2012, 11:46 PM   #6
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Re: Is it Dermatomyositis?

Hey- wow sounds like you have been to hell and back! I am so very pleased to hear that you are fully mobile again as it is these things that can get us really down :-( It's very interesting to hear that your CK levels have never been sky high...I have had to accept the fact that most Rheumatologists think differently! I am yet to have a muscle biopsy as my Rheumatologist is waiting until my CK level increases again! I am certainly not keen on having one but if it gave me a diagnosis......hmmm I don't know!! My symptoms come and go; I will go through a stage where I have several choking episodes/day then nothing for a few months. The symptoms that never really go away are joint pain in my hands an feet and lethargy - but it's much better than it has been.

My diet is certianly something that I have been aware of more recently; with the Prednisolone I have put on a stack of weight - which doesn't help my joints. Stress.....that's a tricky one as it's this silly disease that stresses me!! I have seen several psychologists which I have not found to be helpful at all and all this stuff does get me down. If I need to explain what has happen to me in the past 2 and a half years to a health care professional - I tend to break down and cry....I just can't help or stop it. Just writing this brings tears to my eyes....I think it's the loss of 'normality' that I am grieving. Never the less, it is very therapeutic reading and writing on here as it reminds me that I am not the only one suffering (as sometimes it feels that no one understands) :-( I try very hard to remain positive and I find my hospital stays (for one thing or another) knock the confidence out of me and it takes a while to rebuild it. Thank you very much for sharing your story - I am always very grateful to hear these :-) Take care xx

 
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Old 09-28-2012, 12:47 AM   #7
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Re: Is it Dermatomyositis?

You do have a lot going on, and it seems the mixed connective tissue disease diagnosis is right for now, as you have features and lab results suggestive of RA, dermatomyositis, and possibly lupus. A lot to live with. I have RA and lupus with myositis, so I do understand what you are going through! The purplish discoloration, knuckle rashes, elevated CK and swallowing difficulty is consistent with DM. The arthritis, more suggestive of RA or SLE. The anti CCP fits with RA. So you have overlap of several entities. In your previous labs, if RNP antibodies are high, that fits with MCTD. An EMG might be helpful and if normal would probably eliminate the need for muscle biopsy. The hip pain is concerning because of the high steroid doses. I would get it xrayed or an MRI. It may just be arthritis but could be avascular necrosis, a complication of Prednisone, and early recognition is essential, with the goal of getting off the steroids.
A barium swallow could be done to see what is causing the swallowing problem. If the difficulty seems high up, it could even be an enlarged thyroid gland, which your Dr can check on physical exam. You are very smart to be documenting and journalling your symptoms, meds changes, tests etc as well as your feelings. It can be more helpful than therapy just to identify your feelings and writing them down seems to be an emotional cathartic and stress releaser. Eventually it may form the basis for a book! I have lived with my issues for 28 years. I have a wonderful husband, 3 great kids, and I am proof that one can have a decent and rewarding life in spite of these challenges that force us into a different lifestyle than we imagined but we make lemonade out of the lemons and continue on the best we can. I am very glad you have a good, kind Dr. who cares about you!

Last edited by ladybud; 09-28-2012 at 12:50 AM. Reason: typo

 
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