Hi Trevor. Congrats on getting started. I think it took about a month for the Prednisone to start helping me and I was on 60 mg daily. I had to get to 20 mg of MTX for it to help (as I tapered the Prednisone) and it took about 6- 8 weeks to work. I think it is worth talking to your doctor about but I suspect you need to give it a bit more time.

I would go ahead and ask for a test for Lyme disease. It won't hurt to do that. People also find a gluten free diet helps with feeling better. I've not gone gluten free but I avoid carbs and eat "close to the source" as much as possible. I avoid processed foods and try to drink tons of water every day. I do notice a difference. When I have a pasta dinner, I feel crappy for a few days after.

I had shakes really bad from the Prednisone. As far as the tightness, it could just be muscle weakness from the disease. Ask your doctor about it but it might resolve itself as the Prednisone and MTX kick in well.

Hi Trevor. There was a lady called Sonia on this forum being treated in Canada fir a year for PM when in fact she had Lyme disease. My Rheumatologist here checked that out routinely in the beginning so do ask your Rheumatologist. Prednisone worked almost overnight fir me on the pain side of things but the rest took a bit longer. I believe it was about eight months before I really turned the corner. Its a good sign the fatigue has improved and you are not losing more weight. Keep on eye on everything and make sure nothing is getting worse like speech and swallowing. Ask her how you can contact her and get to her fast should you feel things are getting worse, this is so important. It does take time Trevor, you will need patience as well as Meds. Ask her on Wednesday if you can now start to walk a bit further everyday to strengthen those muscles. Hope all moves forward for you. Best wishes. Autumm

Hi Trevor. As the others have said, it can take a little time for the meds to kick in. I'm not sure what dose of prednisone you're on, but my neuro started me on 100 mg./day for the first week, then 70 mg./day for another week, and then down to 60 mg./day for awhile. Prednisone worked very well for me, but it doesn't work the same for everyone. I'm one of the people for whom a gluten-free diet makes a big difference. If I'm accidentally glutened, it raises my inflammation levels within 30-60 minutes. And it can cause weakness and fatigue for 7-10 days. I also avoid all artificial sweeteners, as they cause me much pain. And I take supplements.

As for Lyme's disease, I've been tested a few times, with all negative results. However, some people must be tested several times before they get a positive reading. Doctors have become frustrated trying to diagnose me, because my blood work is often "perfect" even though I'm very sick and they know it. One doctor called me "unique." One reading that was bad was my parvovirus 19, but the rheumy I was seeing at the time told me it was nothing to worry about. I've often wondered if he was really correct about that. Maybe you could ask for that to be checked.

It is a good sign that your fatigue is some better and that your weight has stabilized. When you see your rheumy, discuss all your concerns with her. Take a list of questions with you. One more thought, has she checked your vitamin d levels? If not, ask her to check them, because many of us with autoimmune diseases are found to be deficient of vitamin d (& sometimes other nutrients such as vitamin b-12 and iron). Best wishes, Trevor.

Thank you again for all the advice. I'm not to patient with this. I'm trying to watch my diet but eat so I don't lose weight and get tired. this pressure in my head come up suddenly I'm going yo work which keeps my mind off things. I going to walk each night and hopefully it helps. I will ask the doctor some of the questions all of you suggested.
Thank you again
Trevor

Trevor, glad you are soon to see your doctor. I find it takes at least 2 weeks in a higher dose to get adjusted and the shaking may be from that. Head pressure can be blood pressure and that can go up with steroids too. Often the steroids make you feel you can do more and then you get more tired because for the first few weeks they really want you to rest more than avarage... My neck muscles went weak on me too. Had trouble turning over in bed from weak hip muscles too. Glad you are maintaining weight, that is an important component. Avoiding salt is also good when on steroids. We can gain weight, and retain water on steroids.
Methotrexate takes months to work so high doses of steroids are often used to keep the immune system at rest while the Methotrexate takes over its job.
This is a marathon not a sprint and you will not be better soon. Took me months and months to get the right combo. Thankfully you have a doctor helping you. It took 3 months just to get into the specialist for me and then 6 months till i could function...
Hang in there... We are rooting for you.
Shawna, an RN with DM, 8 years rash and 3 plus years muscle collapse...