Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Update on MTX

amberhere
amberhere
Hi all, I am now into my 4th week of MTX - my hands seem to be not so swollen but the pain is still there - will this get better? Or is it the case the swelling will go down but the damn pain still exists? ALSO when do you start to taper the Prednisone? I have to see Rheumy in July but until then will I have to still be on 9mg every day? I have blood work done every 2 weeks and due to up the MTX in a couple of weeks time to 15mg.
autumm
autumm
Hi Amber. It takes time to get the MTX into your system and a month is not very long. I am so pleased the swelling is going down and in time the pain should go too. Your Rheumatologist has timed your next visit to fit in with when he believes the MTX will be fully effective and your blood work shows him you are tolerating it well. When you next see him and all is well with the MTX he will start your prednisone taper. I have no medical training Amber, this has been my experience of taking a second line drug. It's all about time, patience and the meds. Best wishes to you. Autumm
trpt1
trpt1
Hi Amberhere, I think Autumn expressed it well that this disease is all about time, patience and the meds.

I had swollen arms and hands at the beginning of my DM. I began on 60mg of prednisone and 17.5mg of MTX. After three months on the high doses of prednisone, my blood work began to show that my disease was under control. I began to taper the prednisone and raise the MTX to 20mg. I did not actually see the arm & hand swelling go down until the three months passed at high medication dosages.

My doctor goes by blood work to determine when to taper. An active flare will mean going up on prednisone. Once my blood work shows that the disease is under control and I feel well, then it is time to taper. I have learned tapering is NOT a race. If I am tapering down, I will not taper lower until I feel well and stable. I will stay at a certain level of prednisone longer than 14 days and maybe for a month if I do not feel stable.

Patience is the name of the game. Keeping medications adjusted so that you feel well on a daily basis is the goal.
mccourtjs
mccourtjs
It took a good 2-3 months for the MTX to start working and not until I got to the full dose of 25mg. I have not been able to come off of the prednisone and am still at 10mg even though I've have tried. THe pain gets better but still rears it's ugly head whenever it feels like it, but it is much better. It took me a long time to learn to be patient.