Hi Krissytin an welcome! This is a great place to learn about DM. I am fairly new as well to this condition...just firmly diagnosed about a month ago. I also have Lupus, a non-Hodgkins lymphoma survivor and possibly fibromyalgia...recently chestvexray showed possibility of enlarged heart. I fully understand your feelings in trying to deal with this I have struggled especially with the DM diagnosis. Makes me feel like one more thing! My encouragement to you iis to learn all you can about DM an stay positive. In my experiences being thankful and optimistic has helped me through along with a great family support group. I have a strong faith in God and I know He loves me more than I can imagine and has my best in mind through any situation. I am trying to make some hard decisions in my life. The people have been kind here in encouraging me to not make hasty decisions. I appreciate their wisdom and experience.

I am on pednisone and methotrexate right now. What meds are you taking? Do you see it helping. This is a rough journey...I know you can do it!

Tricia

Hi Tricia, thanks for the welcome. Yeah, I have come across your discussions while browsing through here. I do hope it gets better for you down the road. Great to see nice people on here who support and put forward their advice for others.

As of now I am on 60mg a day on pednisone.

Been reading more about this. My Dermatologist did two skin biopsy, one was a definate link to dermatomyositis, the other one was just stated as "autoimmune" so still doing some more tests.

This has been so hard,makes it worse that i work long overnight hours.

Hi Krissytin. Sorry to hear you have DM. You are fortunate to get a quick diagnosis and start treatment early. Do you also see a Rheumatologist and are you taking other Meds to protect your joints and bones from the Prednisolone. Has your doctor discussed any other Meds with you. It is important to rest at the beginning to allow the drugs to work and to bring down the inflammation in your body. Do what you can but don't push it. I look forward to seeing your progress. Autumm

Hi Autumn and thanks. Yeah, trying to rest as much as I can. Im in the process of looking for a rheumatologist. O,Didnt know you had to take something else along with the pendisone. As of now im just taking the pedisone and applying topical lotion.

Hi Krissytin. You must ind a rheumatologist to direct the rest of your illness. The Dermotologist is ok for the skin but there is more to it than that. You need a complete Myositis work up which includes various tests to make sure you are healthy apart from the DM. Taking steriods you also need to take Meds to protect your bones and joints which can be damaged by the Pred. You should also be taking a med to protect your tummy which should be taken at the same time daily as the Pred. Most of us are short of Vitamin D so also take that with Calcium. As you taper down from thePred you may need a steriod sparing drug to stop you flaring again. All this will be explained to you by a good Rheumatologist. Best wishes. Autumm

Hi, Krissytin, and welcome to this great community of people. I was diagnosed with PM in 2008 and placed on 100 mg. of prednisone. It was a neurologist who finally diagnosed me (after 2-1/2 years of problems). His philosophy was to only use one prescription med at a time, so I was never placed on a second medication, and this worked well for me. In early 2011, I was diagnosed with overlapping DM and Lupus. Then, in May 2011, I was able to completely wean off prednisone and have not been on anything for the PM. But if I would go into a flare, I definitely wouldn't hesitate to go back on prednisone again--even though I have the typical love/hate relationship with it.

At the beginning of my PM journey, I began a gluten-free diet, which is essential for me. Gluten raises my inflammation levels within 30-60 minutes of ingestion. Also, I take several supplements. And, as Tricia mentioned, I, too, have a strong faith in God. I believe the Lord directed me to this forum. Also, I think these things keep me going each day.

I'm sorry for your diagnosis, but am glad that you found us. The people here are very encouraging and informative. Even though we've never met, I consider them friends. Glad to have you join us.

Welcome Krissytin to the group! The beginning of DM is the most difficult part. Once the meds kick-in, then you will begin to stabilize and feel better. I think Tricia and Autumn have given excellent advice to rest, and stay positive.

DM is a journey that will actually bring some positive changes into your life. Things will be different but you will learn to cope. Be patient with yourself and do not be hard on yourself. Give yourself more time to get things done, especially when it comes to lifting groceries or housework.

The Myositis Association website has a lot of information on DM, PM, and IBM. There are a lot of scholarly papers on that site which discuss medications, disease progress, autoantibodies, and many issues of interest.

Do check the other posts on this site that may answer so many questions that you may have at this point. It is great to have you with us. Keep us posted.

Thanks for the welcome and the information that you all have shared. I'll be seeing a rheumatologist soon, its just hard to get to doctor offices since I do not have my own transportation. :-/
Yeah my calcium levels are low. Found that out when they were testing my blood to see what I have was an allergic reaction.
Waiting for the meds to kick in..Ive been feeling more fatigue, sluggish and my joints in my wrist feel like they are being squeezed. I have so much housework to do but I cant and work has become a challenge, its hard when you are at this alone.

Thanks for sharing the web site trpt1, looked it up and it does have useful information on it.
just got to truck right on and be able to cope with this. This is so hard.

@Krissytin
My wrists and thumbs are very painful, too. My one wrist is already almost immobile, now the other one is headed the same direction. The past few weeks, they have been really painful and swollen, and it has me wondering if I might be going into a flare. Just last week I searched online for causes of painful, swollen wrists. PM and DM were listed as causes of painful, swollen wrists and thumbs. Also listed were Lupus, Scleroderma, Reynaud's, MCTD, and others. Here is the website:
http://www.rightdiagnosis.com/symptoms/wrist_swelling/causes.htm

Hi Nanny. I am so sorry you have swollen painful wrists. I had both wrists swollen and painful with sausage fingers at diagnosis. I know you will see your doctor fairly quickly to dampen down any inflammation before it gets out of hand. It may just be osteo arthritis which is painful enough. I shall be looking here to see how you are doing. You have been a great support to me in the past six months. Autumm

Yikes nanny, do I know how that feels! At least it is treatable. Yeah I thought before I had gout or something since it seemed to be the most common whenever I did a search.

Hello and welcome to this forum. Sorry you're here, but glad that you found a good place.

I'm new here, too. Everyone here seems to be very helpful. I'm still going thru the diagnosis process. I'm waiting to get into a Univ for further evaluation. My primary care doctor sent the wrong info the first time. Now, I'm waiting to see if they'll except me.

I do go see the dermatologist next week. They're going to biopsy something the resembles sceroderma. When they biopsied yours, where was the biopsy taken from? I have some rashes on my knuckles, but not sure if they can biopsy a knuckle.

Welcome again,
Kelly

Thanks forto the welcomedisney Kelly and Omg they did do a biopsy on my knee and knuckles! The knuckle hurt so bad!! My hand also got infected three days after, it was painful. Glad they gave me some antibiotics for it. So yeah be sure to take good care of it.

*excuse the first words in that sentence. Ha! My phone has this wierd typing thing that im still getting use to.

Krisstytin,
Another welcome to the site! I just got dx'd with DM last Aug.He thinks I have had this for a very long time. Honestly, I was about your age when my fatigue started. And am twice your age. Good that you were dx'd early. It is a frustrating disease, I was very ill this past year, but am feeling better. Good to meet you.