Hi Trevor. Welcome to the group. I am sorry you have DM. Are you also seeing a Rheumatologist and have you had a full myositis work up. MTX will take 3/6 months to 'kick in' so to prevent further damage while you wait you should also be taking steriods at this time. Hoarse voice is part of the disease as the voice is a muscle. Your sore throat should have been checked out as part of a full myositis work up. This work up is vital to discover any underlying issues or not, but it needs to be done, it will include MRI and Ct scan and many it het tests.exercise was not recommended to me by my Rheumatologist until he had the muscle inflammation under control. There are wonderful people on this Firum Trevor who will help you along your journey, we have all walked in your shoes. There is life after treatment for myositis. Best wishes to you and ask us anything you need to. Autumm

Hi Trevor49, Welcome to our nice group. I think Autumn said it well that it takes three to six months for MTX to kick-in. MTX hangs around in the body too. The usual protocol for DM is a corticosteroid like Prednisone to stop the muscle weakness. In addition to the Prednisone it is important to take a DMARD (disease modifying anti-rheumatic drug) like the Methotrexate.

DMARDs are "different flavors" of meds that basically do the same thing which is to slow down the progress of disease. It is pretty standard that most people begin the DM journey on Prednisone and Methotrexate (usually 17.5mg or up to 20mg on the MTX.) Imuran/Azathioprine is another popular DMARD that is often used instead of MTX.

I started my DM journey on 60mg of Prednisone and 17.5mg of MTX. After three months on the high dose of Prednisone, I began to see the weakness go away. I was able to start tapering off of the Prednisone at the end of my third month. Today, I take 5mg of Prednisone and 750mg of Cellcept. Cellcept is an excellent DMARD.

The beginning of this disease is the most difficult. We all learn to have great patience with this disease as I am sure you are experiencing.

Sore throat is common at the beginning of DM. I taught school and lisped a lot when talking. The Prednisone eventually strengthened my voice back to normal. If the sore throat stays around longer than three months (after taking prednisone) then check the larynx (voice box) and CHECK THYROID too.

If the swallowing begins to get worse, then see the gastroenterologist. Swallowing problems are serious issues.

An important rule of thumb with DM - Always talk to the doctor before starting an exercise program, diet or supplements. I also check with a pharmacist to make sure other medications/vitamins do not interact to cause a problem with my current meds.

I hope this helps. We are glad to have you in our group!

Thank You very much for the advice. I also have ulcerative colitis but is under control. I haven't had a full myositis work over yet as it takes time in Ontario Canada to see the right doctors. I have been on steroids before and had reacted well with them . Right now this DM has hit me like a ton of bricks. I hope there is a light at the end of the tunnel. I initially thought I had ALS but this came out of no where. I waiting for my Rheumatologist appt. I know he will put me on steroids. The dermatologist said my blood work was very good and didn't need to go on steroids but I don't think she knows how I feel. It is soo good that I can get information from other people. I never thought holding a bottle of water would feel heavy.
Thanks again Trevor

Welcome to the group. I'm sorry you have Myositis. I going to tell you right now that you are probably feeling the worst you will and it WILL get better.

You don't mention when your appointment is with the Rheumy. It is a delicate balance because steroids will help you rather quickly (within a few weeks) but they could also impact your test results. I would decide next steps based on how soon you get to see the doctor.

I take Methotrexate too. It only took about 6 weeks for it to start working for me but I had to get up to 25 mg fairly quickly to have it control the symptoms. 25 mg is around a "normal" dose for Myositis. I had to move to injections to get there. I also took my weekly dose at night before the weekend. That way, you will feel somewhat better before you have to go to work again. For me, the day after I take my dose is the worst side effects wise (nausea, diarreah, extreme fatigue).

I worked through the whole diagnosis process but it was HARD. Try to simplify your life outside of work so you have the energy to do your new job. Start looking at every day things you do that make you fatigued and sore. There are things you can put on the back burner for now until you can get the medications in your system and working.

Hang in there. I promise it gets better.

hi there! the others have said a lot of great things so all I wanted to say was hello and welcome! I just got back from a family vacation in Ontario. we go every year and this year was the best! when I was first diagnosed with dermatomyositis, I was down to 67lbs, couldn't swallow at all, couldn't get out of bed etc. very very sick!! but now (almost 3 years later) I just climbed a very challenging mountain/rock cliff. it was my second year in a row doing that same hike, a smaller one the year before. so canada is a special place to me, and a good place to kick my DM in the butt! I hope you find good doctors and care. best wishes and keep in touch!

Hi Trevor. Keep an eye on throat and swallowing issues which can become medical emergency very quickly especially without the steriods. I do hope you don't have to wait long for your Rheumatology appointment. My blood work was good too for 2 years until suddenly it was really bad. Keep an eye on things and be your own advocate. Any change straight to the doctor. I do wish family doctors would start to understand the urgency of this disease and the need for hard fast aggressive early treatment. Best wishes. Autumm

Hi Trevor49 - welcome to this great support group. I was diagnosed with DM last year and I can assure you it does get a lot better. Everyone has said it here - with the right meds you will feel a lot better but it does take time. It is a bit trial and error at first as to what DMARD is suitable for you but you do get there in the end. Take care.

Hi, Trevor49, and welcome to this forum of nice people. I have PM (2008) with overlapping DM and Lupus (2010-11). Everyone has given you good advice, so I'm just going to extend best wishes to you for your doctors to treat you quickly and aggressively. As has been said, there is life after myositis.

Wow. Everyone is so nice and also it nice to hear that things will get better. Today I had an down and up day. The RA office called today and I told them I needed to see them this week as I'm getting weaker and I know I have to go on prednisone. Typical Ontario health care. she says they have to send me for blood tests which takes 21 days then I can see the RA in late Sept. I told her I would be in a wheel chair by then. I called my family doctor who is very good and they found a RA that I can go and see tomorrow. I don't know what will happen but I hope they plan on treating me. Does the steroids help with the throat muscles?
Thanks everyone and I do appreciate any information regarding DM. Sometimes I wonder if life is fair as 4 years ago I had serious issues with my colitis- now two autoimmune diseases.

Be sure to be checked for a virus on your throat. You can't always blame Myositis for everything. But if it is Myositis, the Prednisone will help.

I'm so glad you got in tomorrow. We will be anxious to hear how it goes. I couldn't wait for all my tests before starting Prednisone. I went ahead and started and hoped for the best. I had a muscle biopsy 6 weeks after starting high dose Prednisone. It still was helpful.

Be prepared to start on high dose Prednisone. Most of us start on 60mg daily without a stop date. Usually they keep you on that for a month or two. Then you start tapering. The Prednisone is no picnic. The side effects aren't pleasant but it should help you feel better fairly quickly. If you are given Prednisone, be sure to ask what else you should be taking to combat the side effects. For me, I needed calcium and something to help me sleep (I take Benedryl). You will also want to check on eye exams and Dexa scan to check bone density. Speaking of that, are you taking Folic Acid for the side effects of the Methotrexate?

Good luck tomorrow. Let us know what you learn.

Hi Trevor. Good you are seeing a Rheumatologist and that your family doctor understands the urgency of this. Like Lexis I was very ill and had to start the steriods before biopsy or any tests. In the end I did not need a muscle biopsy, my Rheumatologist could see the inflammation on my MRI and I tested positive fir Myositis specific auto antibodies so straight ahead with agressive treatment. It is so important to be diagnosed and treated fast. All the best today at the. start of your journey. We wish you well. Keep in touch. We are here. Autumm

Hello Trevor,sorry that it has taken me so long to welcome you to our little group of misfits. Not a too bad group of life's misfits and they are some of the best of the best for DM and PM advice and support. We cry for each other, give hugs and some of he best advice. I on one hand misspell a lot of words some days and with my hands and fingers doing whatever they please on most days I don't always proofread so I am warning and asking forgiveness at the same time. I have PM and have been advised that it is in remission and has been for the last few months, which seems to surprise my doctors who keep reordreing the same labwork over and over even though they can see each other's report. PM took me by total surprise and I have had some good days and seemly more bad days dealing with it. I fell last fall and fractured both thighs and the fractures weren't seen for quite a while until I woke one morning in pain and unable to move my body at all. I spent a litle over 5 weeks in the hospital and rehab at a SNF. The majority of my issues now are dealing with the neuropathy that is caused by the Prednsone and my Diabetes. As the prednisone elevates my blood glucose levels it is causing my nerves to become even more damaged and last week I couldn't afford my copay to see my pain management doctor to get my presciption for the pain meds that I take to be able to tolerate the pain as it never goes away. I have an appt tomorrow to see the pain specialist. I am going to talk with him about giving me a nerve blocking injection. I didn't want it but my prior doctor who was very good had planned that as the next step of her treatment for me. I had to purchase insurance with the Affordable care act and I have a very good policy except many of my doctprs are now out of network as they are in st pete and I am in Tampa. I even hae to find a new rheumy but I am considering paying the out of network rate for at least one visit. I loved my rheumy and he was on the team who diagnosed me, but I will look at my bills and decide based on cost. With this illness we have to see so many doctors and take so much meds. I have been able to cutback on the number of doctors and how often I need to go in. I have a $50 copay each time and that adds up. I also went on total disability and have to pay for my own health and life insurance which is more expensive since I am no longer with a group. I was diagnosed in July 2011 and sometimes feel like a baby longing for the ins and outs and this group has really helped me out a lot. We try to provide positive support each other. Sometimes it is my only means of communication as I am now wheelchair bound after fracturing my thighs and no longer driving and that is a story in itself. I sometimes adjust my steroids and other meds as I feel works best for me. I have found the doctors that I see many times have no idea how to work PM as they either have never come into contact with anyone who hs PM or they are just lost. My remission is a blessing as long as it gives me time to focus on my diabetes and the neuropathy and hopefully and I am very hopeful to be able to tamper the steroids so that I can take more classes that are offered by the SBA for free. We are here for you at any time. I am long winded even when typing and hope that it doesn't scare ypu away. I am on MTX six 2.5 pills taken between Sat and Sun. I was on cellcept until my white blood count went down to 2.1. I have tried verious other meds such Actfar and IVIG injections. All expensive and didn't seem to do much. I also take gabapentin and lyrica which I am advised I shouldn't be taken at the same time and I will be discussing that tomorrow also. Again welcome to our own little world. I call it our invasion world.

Hi Everyone. Thanks again for the advice. Yesterday I went to the RA and boy she was super. she set me up today for x-rays and ultra sounds. Im having a muscle test and muscle biosby in the next week or two. she put me on prednisone 40 mg per day: she said she will increase it but based on my blood test she is trying that first. Very pro-active and she has many patients with this disease. I hope that the meds do its thing. I just want to get better so I can get back to a somewhat normal life. It looks like I have a mountain to climb but hopefully I go in the right direction. Thanks again for all the support
Trevor

Hi Trevor. How wonderful you have found a good Rheumatologist. She is starting the work up and we are here if you have questions. I found the prednisone worked so fast and I wish the same for you.. I started on 60mgs. Iturned the corner eight months into treatment and two years on I feel better on a daily basis. Its a Marathon Trevor at the beginning, it's not a sprint. Be kind to yourself, but be patient. You will get there. Best wishes. Autumm

Thanks Autumm. Two more questions. I have this cough now and my eyes get blurry. Are these two part of DM