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.

317 Members

2,891 Posts

0 Online

joyforalifetime 02/06/2014

hi all, hope you are well!
i tried searching through past discussions but didn't find anything after a quick skim so i apologize if this is repetitive! i just wanted to see what people's experiences were with tapering methotrexate. i've been off prednisone for a while and we have started tapering the MTX now. In October I went from .7 to .5 (not sure how that equates to mg ha) and that has gone well so far. I just had a doc appt this week-which went well, always so good to see my doc. I will be on this lower dose until next october, and basically just taper a little every year until i'm off it if things go well. what has been your experience with tapering?

autumm 02/07/2014

Hi Joy. I believe you don't have to taper MTX. You can just stop taking it. It's not like the Prednisone. Like all these second line drugs the Rheumatologist will take us down slowly watching the lab work all the time to be certain we remain well. Good news you have come so far and best wishes fir your continued good health. Autumm

trpt1 02/07/2014

Hi Joy. Please talk to a pharmacist immediately about what you are doing. Ask about the use of folic acid with MTX too. What you describe is not the typical protocol for DM/PM.

If you visit The Myositis Association website at www.myositis.org You could discuss with others the process of how they went into remission. I know others on this site will share their remission experiences.

Good Luck!

autumm 02/07/2014

Trpt. I think Joy is doing this under the control of her doctor. I believe it is normal procedure to lower the dose of these secondary drugs slowly when the Rheumatologist wants to stop them. Its different to tapering the steriods as they lower the dose yearly or six monthly all the time checking the labs, I think the doctors try to find the right theraputic dose on which the patient remains well or if the patient can eventually stop and be in remission. Autumm

lexisgirl 02/07/2014

I tried tapering to see if I could be on a lower dose. Our plan was to taper every 6 months. After my first taper, I felt weak and was having mobility problems so I went back up to my original dose.

I know you don't have to taper because of your body's response to the drug but the goal is to taper to a lower dose without causing a flare. I would love to get to a lower dose. I'll try again when I am feeling better overall.

autumm 02/08/2014

Hi Lexis. I have finished the prednisone taper but still taking the Imuran. The lung specialist says its 'key' to keeping my lungs stable. I have no idea how long they will keep me on it but very pleased to be where I am. Best wishes. Autumm

lexisgirl 02/08/2014

I'm glad you got off the Prednisone Autumn. I'm off mine too and have gotten used to being off...although I've not lost one pound that I gained on it. I think my metabolism is super messed up.

I do agree the goal is to keep things going strong while trying to figure out the right dose of medication. Since everyone is different, it is often trial and error.

trpt1 02/08/2014

It looks like I get to taper Cellcept by surprise! I got a call from my doctor yesterday. I was told my liver enzymes were elevated and my kidney function has lowered. The doctor told me to reduce the Cellcept from 1500mg down to 750mg. I am not flaring. It appears my liver is having a problem.

So, I get to experience tapering that has nothing to do with the goal of remission. HA! Oh the things I learn with this DM! Nothing like the twist of organ involvement.

autumm 02/09/2014

Hi Trpt. I am sorry to read your post. I too had these problems early on with the Imuran. I am sure they will find the right dose for you which your body can metabolize well. Best wishes. Autumm

joyforalifetime 02/09/2014

thanks for your responses! yes, I absolutely do not do anything outside the direction of my Rheumatologist. He has been with me since he diagnosed me in the hospital over 2 years ago and everything he has suggested/tried/told me to do has worked well for me, so I trust him! I tapered off from Prednisone beautifully, even though it wasn't the way most people taper. Just curious what other people's experiences were and if there were any signs I should watch out for. lexis, I will watch for weakness and mobility issues like you experienced.
autumnn, I hadn't heard before that you can just stop MTX, that's pretty cool. I'm happy to stay on it while my doc watches the bloodwork. I would much rather go slowly and carefully than try to get off as fast as I can--even though I can't get pregnant until I'm off of it, so I'd like it to be sooner than later!
trpt1, so sorry to hear about the liver involvement-just said a prayer for you! glad you aren't flaring. I will ask about folic acid. Thanks again!! :)

autumm 02/09/2014

Hi Joy. I am sure it will all go well for you. You will never know until you try. Your rheumatologist sounds just like mine. We are indeed to lucky to have found good doctors. When there is trust in the Physician it makes it all a little easier. Autumm

joyforalifetime 02/09/2014

i agree 100%!!! :)

Join the Conversation