Hi there! I'm calling on folks with polymyositis to respond. I have just been diagnosed and feel a bit confused about everything. I have been prescribed methotrexate by the doctor, and I am hoping to hear from others who take this drug. Did it improve your symptoms, and if so, how soon can I expect to see this?
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Good evening. I was diagnosed in April 2008. I have been on Prednisone/Stilamedrol since then (high dose tapering down to 7 mg at present) with methotrexate in conjunction Azathioprine. I was on methotrexate from May 2008-Nov 2016, Azathioprine discontinued in Sept 2012. I was on IVIG until Feb 2018 and shifted to Rituximab and been on since. Rituximab has been a God send.
Methotrexate should not be a long term treatment.(4 years probably max) I ended up with Cirrhosis of the liver which caused Splenomegaly, Esophageal varices, portal hypertension, internal bleeding and corrupted white count and platelets. I am extremely ambulatory, however, go through relapse annually around Mar,April for 40-50 days.
Yes, this is a rare disease...it effects each patient differently. Had I known the risks, I would have requested DC Methotrexate at 3 years. Rituximab is amazing and works much better than IVIG in my situation.
You may be shifted to CellCept vice Methotrexate. Make sure they monitor the dose. It is an increasing taper. Make sure they (Drs) have a good understanding of the med and request a slow taper. CellCept can be as Hazardous as Methotrexate.
Be sure to force limits on yourself. When you tire, rest. Do not let family convince you you are capable of things you are not. Baby steps..
This is not a cold. This is an insidious disease. Ask questions. Research treatments so you know what yo expect.
I am reminded by my treatment team I was supposed to be gone 8 years ago. I am still here. I ask questions. Issue demands, I have made members of the team cry if they aren't being active. You take control and maintain and strong will, faith and let them know they work for you
Methotrexate should not be a long term treatment.(4 years probably max) I ended up with Cirrhosis of the liver which caused Splenomegaly, Esophageal varices, portal hypertension, internal bleeding and corrupted white count and platelets. I am extremely ambulatory, however, go through relapse annually around Mar,April for 40-50 days.
Yes, this is a rare disease...it effects each patient differently. Had I known the risks, I would have requested DC Methotrexate at 3 years. Rituximab is amazing and works much better than IVIG in my situation.
You may be shifted to CellCept vice Methotrexate. Make sure they monitor the dose. It is an increasing taper. Make sure they (Drs) have a good understanding of the med and request a slow taper. CellCept can be as Hazardous as Methotrexate.
Be sure to force limits on yourself. When you tire, rest. Do not let family convince you you are capable of things you are not. Baby steps..
This is not a cold. This is an insidious disease. Ask questions. Research treatments so you know what yo expect.
I am reminded by my treatment team I was supposed to be gone 8 years ago. I am still here. I ask questions. Issue demands, I have made members of the team cry if they aren't being active. You take control and maintain and strong will, faith and let them know they work for you
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