Just wanted to add that my symptoms started with a rash and fatigue. Then about a month ago I started experiencing pain in my upper thighs which made it difficult to go up and down stairs and also extreme pain in my upper arms which made (makes) lifting anything or even drying my hair very difficult. I am usually a go getter and so having this is just devastating. I am scared that the pain may never go away and will just keep getting worse. The dermatologist thinks they have caught this early and I pray that helps my prognosis.

Hi Angie,
Your prednisone should start relieving your pain and rash any day now. I was just diagnosed in July and I have improved a lot since then. Your Rheumatologist will probably put you on other meds too.
I'm so glad you found our little group, it's wonderful and you will find comfort here.
Lauren

Thank you Lauren. I was actually just diagnosed yesterday and started the Prednizone yesterday. They said to give it a good couple of days to start working on the pain. I'm happy to hear from someone who has had improvement like you.

Welcome to our cozy little group, Angie...I have polymyositis and was diagnosed 2 years ago....Not only will you learn much from the myositis peeps, you will also find compassion, understanding and encouragement....Although you will have frustrating days, there is most definitely hope for your days ahead....Hang in there and take care!

Cheers!
Maggie

Hi, Angie, and welcome to this DM/PM support site. You will find lots of great people here who listen and understand. I was diagnosed with PM in 2008, and then with overlapping DM and Lupus early this year. I'm glad you were diagnosed quickly, as that should work in your favor. For some of us it took a few years, and lots of damage was done during the interim. The prednisone should go to work for you soon, but be sure to keep the side effects in mind. You will be amazed at how much better you'll feel once it kicks in. Here's hoping that you like your rheumy and that s/he is knowledgeable about DM. Best wishes to you, and, again, welcome.

Hi Angie - I am SO happy that you were diagnosed early and that you are on Predisone right away - that is key. It will kick in in a few days and it is the normal form of therapy when diagnosed. They wanted me to start with 60 mg a day but I could only tolerate the 40 mg. a day. You have found a great website with great knowledge and understanding. Everyone is different in how they react to the meds, symptoms, etc., but it takes patience. I hear you about being very active before this as I was, but I am thankful for the medications to make me better and I have embraced the "new normal"
Love Hugs and Prayers :-)

Hi Angie!
Welcome to our group. I'm sorry you're here because you have DM, but at least you've found a good place to be. We're a bunch of friendly people who can give you good advice and lots of support to get through this.

I just wanted to let you know that 10mg of prednisone is not standard treatment for DM, so you might not get much pain relief right now. Most women are started on 40-60mg/day to get the inflammation under control quickly. I'm glad your rheumatologist appointment is next week, and I hope he or she will get you started on appropriate treatment and explain how the meds work for this disease.

Unfortunately there are too many docs who have little or no experience with myositis and are very out-of-date in their knowledge of how to treat it. Early and aggressive treatment will give you a much better prognosis. So it's great that you got an early diagnosis, but please make sure you get the aggressive treatment. Some people have to change doctors to get appropriate treatment, which can be a big inconvenience when you're sick, but sometimes it's what you have to do to get better.

Wishing you the best and hope that you talk with us again soon.
~Lucky

Oh, I just realized you said you're taking 4 10mg pills! Never mind what I said. Your dermatologist seems to know what he or she is doing. Good luck!

Welcome Angie.......just be patient and what you explain as your symtoms sounds framilar to most of us.......hang in there and it will be fine. Patience is rough, yet believe you'll be fine and you will be...not to worry.....blessings, Kim

Welcome! I was diagnosed with PM this past May. This group is helping me immensely. The knowledge and support is amazing. I wish you the best of luck on your journey.

Welcome to this group. I'm sorry you are here because of DM, but it sounds like you are on the right path to feeling better. I'm glad you seem to have caught it early. It may take a few days before you begin to see (or feel) the inflamation dying down, but be patient with yourself and take time to rest.There is lots of experience in this group, so I hope you can find some answers and/or comfort from people here. Each of us has a slightly different experience with the disease, and are willing to share whatever we can to assist you.

Blessings, Kathy

Welcome Angie. We all understand how scary this is but we all are living proof that there is life after diagnosis and it will be okay. Catching it early is helpful. I think I went 3-4 years without being diagnosed. I've had a heck of a time gaining strength and stamina. I think the long period without treatment is part to blame.

I agree with the others that the Prednisone will start working fairly quickly. Then the goal is to find another drug to help and try to get you off the Prednisone.

This is a great group that is full of information and support. Know that it will get better and we all understand what you are going through.

Welcome angie1026. I was also recently put on Prednisone for my poly and was also a little afraid since I had heard that steroids are not good for the body, but with the pain that I was having and the fact that I was in the hospital for 1 1/2 weeks I welcomed it. If not for the Prednisone I would not be able to stand or walk. I know that it is making me think that I can do these things and if I stopped taking it today I would be back at first base. The best thing is to first have faith in God that he has given you a good doctor as he has me and secondly to follow the directions of the doctor. Ask questions when you visit your doctor. I write what I call a short list of 4-5 questions and my providers which are Neurology, Rheumatology, plus my diabetes nurse and primary care allow me to email them if I have questions or concerns. God led me to a great group who all work under the Univ of South FL banner. I spent a lot of time and money on private doctors for 3 years who never found anything wrong with me. I will never go back to a for profit private doctor. We are here for you.

Welcome Angie, my words of wisdom are become very friendly with Patience!!! Nothing with DM/PM is very quick. It took years of my body fighting me to get to my less mobile DM spot, and the recovery is not quick but is working. You can add Tylenol or Advil type meds to the Prednisone until the pain decreases. It took a few days for it to decrease and after 2 weeks it was gone for months. I had pain again with a flare at maybe 7 months but this has not been particularly painful physically. Getting used to the less active me has been a challenge but i am doing well with that too. This is an amazing group. Ask questions, share frustrations, whatever you need. We have been in many of the same situations and we are very supportive as a group.
So sorry you have had to join us, but so glad you found us quickly.
Sending you strength and patience and comfort, Shawna

Hi Angie. Welcome to a great group of people who do understand how you feel. I was diagnosed a few months ago and I have found this group to be very helpful. I like the search feature, so if I am wondering about a topic I type it in and I can find previous discussions about it, that has answered so many questions for me. I am also on Prednisone and it helped a great deal with the pain, but my doctor does not believe in using it long term so I also take Methotrexate injections, and that seems to be working. So, hang in there, take it one day at a time and know there are many people who care.
Love and Light,
Maruska
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