Hi Imbecky. Welcome to this support group of lovely people. I have PM with Anti Jo. This is a Myositis specific auto antibody so if you have it you have DM or PM. Your doctor is wise to send you to the Rheumatologist. This needs to be hit hard and fast. I was diagnosed two and a half years ago and after treatment I am doing really well. I now take Azathioprine daily to keep the anti jo suppressed, it needs long term suppression. I took steriods for twenty months but finished those last Christmas. The sooner you start treatment the sooner you will feel better. All here will help you through this difficult time. Best wishes. Autumm

Hi Autumn. Thanks for your quick reply. I am not going to lie. I feel alone and scared right now.

Hi Becky. I understand scared. I too was scared. It's all new and strange and if you read the Internet about Anti Jo it will scare you even more. The treatment for PM and Anti Jo is exactly the same. You have caught this very early on as you have no weakness yet and your breathing is ok. What matters right now is that you see the Rheumatologist very quickly and begin treatment. Your GP doctor is so smart to pick this up so fast. I live in London and I have a great Rhrumatologist. He asked me not to read about Anti Jo on the Internet as we are all different and it was a pointless scary exercise. He was so right. Nothing the Internet told me would happen to me actually ever happened. I am doing just fine. He also would never use MTX as a drug for Anti Jo. I believe the best for anti Jo is Azathioprine or Cellcept but of course you and your a Rheumatologist will decide your treatment. Hopefully you will find a good Rheumatologist who understands Myositis. Keep in touch with us on here, we will help you through. Don't be scared,you have taken the first steps now. Best wishes. Autumm

Hi, Becky, and welcome to this community of nice people. I hope you will be encouraged here. I have PM, with overlapping Lupus. As Autumm mentioned, it's important to hit this quickly and hit it hard. The sooner you get treatment, usually the better the results, so I'm glad to read that you can still walk and get out of chairs. Autumm also mentioned something else that's important, which is that methotrexate is seldom the med of choice for people with the Jo-1 antibody, because it can make lung issues worse. Rheumatologists or neurologists are the doctors of choice with myositis.

While you are awaiting treatment, try to notice any things that negatively affect you. For instance, gluten raises my inflammation levels and artificial sweeteners cause severe joint pain, so I avoid these things.

You specifically mentioned your shoulders. I found that interesting, because my shoulders are always become more involved when my lupus flares. Has your doctor checked your ANA? Hopefully you'll get answers (& treatment) soon. Best wishes to you. Keep us informed of your progress.

I can't tell you how encouraged I am to read these responses. Yes, I am guilty of googing this. Mainly I want to know if there's any chance that I have a false positive.

I am gluten free already because I follow a low carb diet.

My primary sent the paperwork to a rheumatologist. I am waiting to hear from that office. She also sent my paper work to the neurologist I am scheduled to see. She is hoping he will change my appointment and see me sooner. I am too.

So which doctor should I see for this the neurologist or the rheumatologist?

I am so grateful that there is a place I can come to and ask questions. Thank you Autumn and Nanny.

Hi imbecky, If you are not having severe muscle weakness then begin with the rheumatologist for your autoantibody testing. The neurologist is important with DM/PM for the EMG test for weak muscles and muscle biopsy. Your rheumatologist can run the first round of tests and can give a diagnosis.

Try to relax. I have DM. I was diagnosed with pulmonary hypertension in my second year with DM. My enlarged right side of the heart has returned to normal size and I am doing quite well at this point. What looks like a scary diagnosis does not mean it will stay that way. I am now in my fourth year with DM and my heart/lungs are doing well. I know many people who have seen improvements in their health with DM/PM. Our medications do a great job too.

Welcome to this terrific group.

Hi Becky. Here in London a Neurologist would see and take care of someone with IBM and the Rheumatologist looks after PM and DM. A rheumatologist will have extensive training in general medicine so best for you right now is the Rheumatologist. He/She should refer you on to a lung specialist for checks which should involve a CT Scan of you rungs with contrast to show any sign of ILD and lung function tests to see how those lungs are doing at diagnosis, mine were 30% down at diagnosis but with treatment and exercise I have gained back all that I lost. Anti Jo is negative or positive and it's a special test with no room for false positive. We have come a long way from the time when your relative had this disease. Autumm

mine were 30% down at diagnosis but with treatment and exercise I have gained back all that I lost. Anti Jo is negative or positive and it's a special test with no room for false positive. We have come a long way from the time when your relative had this disease. Autumm

Wow! So I can get back if I've lost some. That is great news. Hopefully I will hear back from the rheum and neuro after the holidays. My primary called the neuro and asked if they would see me sooner. I'm keeping my fingers crossed that they are able to start treatment. I'm ready to run again.

If I were you, Becky, I would see both the rheumy and the neuro. For me the neuro was definitely a bigger help. He gave me confidence and was open and honest with me. The rheumy had poor bed-side manner and wouldn't answer questions. So if you see both of them, you can choose the one that suits you better. Best wishes for finding the right doctor for you.

Hi Becky. Don't run or do any excessive exercise until you see either the Rheumatologist or the Neurologist. Extreme exercise when you have inflammation is not advised. Your doctors will give you the best advice when you see them. Autumm

Welcome to this group. I'm sorry to hear about your positive Jo -1. I don't know much about the antibody tests and if it is possible to have a false positive. I have always seen a Neuro for my PM. I don't have Jo1. I have never found the advantage of a Neuro vs a Rheumy. It does seem that people have very strong opinions one way or another. What you want to be sure is whomever you see has experience with Myositis and will partner with you to treat it aggressively.

Hang in there, it will get better.

I am so thankful I found this site. I can't thank you all enough for your encouragement. I have never been one to question doctors, but after reading on here, I think I will have to learn to do that. Up until now, every person I dealt with felt that I must have MS even though I have no lesions. I have spent thousands of dollars on MRI's. The neurosurgeon told me I have mild narrowing of c5 and c6 but it wouldn't cause leg weakness. He then told me to come back to talk about surgery. I laughed. Why would I have surgery when he just told me it wasn't causing my problem?

Thanks so much for all of the support. I will let everyone know how the first appointment goes. If I understand everything I am reading, it looks like I will probably have to go back for more testing (muscle biopsy, more blood work, etc) and then hopefully begin a treatment. So I am hoping that maybe by March, I will begin treatment.

I recommend you push to start treatment before March if you indeed have Myositis. It can move very quickly. The sooner you are treated, the more recovery that could be possible. Ask them to move quickly. If you need to wait to see a specialist, see if your GP will order the CK and antibody tests. You could also have an EMG if you have any muscle issues at all and if your CK is high. Just my recommendation to get things moving. Also call the doctor and see if you can get on their cancellation list. They will hopefully call you if something comes up quicker. I would also ask how many Myositis patients the doctor sees to see if they are even the right doctor for you.

Keep us posted.

Hi Becky. Lexis has given great advice. I did not have a muscle biopsy as the JO-1 is a Myositis specific antibody. My rheumatologist could also see the inflammation on my lower legs on the MRi. He is a very experienced Rheumatologist. He put all these things together with his clinical experience and as I was very sick at this point he immediately started treatment. You should not have to wait until March to start treatment. We know the best results come from hitting it hard and fast and early. Autumm

I agree with Lexis and Autumm. Try to be seen sooner and get treatment started asap.