Decreasing pred again!

[ScreaminMeanie]

Thanks for letting me know that, Chris. I've been on mtx since July 2010. I'm going to seriously push my doc to let me get all the way off, not just taper down to a maintenance dose. I just hope some of the side effects go away once I'm down to 20mg. Honestly, I'd rather be back on (low-dose) pred again than live with this crapola!

Are you going to have 2 infusions or 4 when you do the rtx again?

[Chris G]

Good question........they didn't actually say, but 2 worked the first time, so I'm guessing 2 again.

I'm still on 9/10mg pred, and sure would like to stop it completely! Congrat!! And how does it feel to be off of it??? Will you be having another round of rtx too? I didn't look back at the older posts, but it seems like we had our treatments about the same time.

[Chris G]

And by the way, I think it was your suggestion........I am trying the "fool my body" method of decreasing pred. I'm trying 10, 9, 9, 10, 9, 9, etc. Will see how it goes. So far so good, except my eye lids are really puffy - that's not a great sign (and it doesn't look great), but nothing else seems to be creeping back.

Did you find that your muscles regained some strength after stopping pred? My muscles are so weak!!

[ScreaminMeanie]

It's hard to tell yet....it's only been a month, of which time I've been suffering from side effects of Levaquin, or mtx, or both. I had to pick up softener salt this weekend, though, and the 40-lb bags felt a little easier to handle.

My doc says that with any luck I should not have to do rtx again. *fingers crossed on that one* I have to have labs done again in two weeks to make sure this leg pain I'm having is not inflammatory. If those labs come back good, I will start to feel a little more confident......

[Chris G]

I'm happy to do another round of rtx if it keeps me off of mtx. The cognitive side effects of mtx were unbearable for me.

Oh! My last labs were NORMAL! BUT, every time I try to lower pred, I get a mild argument from my body......puffy eyes, crustier nose (I just noticed). I don't want a full on flare! And without a maintenance drug on board (can't take imuran - refuse to take mtx - never tried cellcept), another rtx sounds fine with me. I suspect after that we will talk about some sort of maintenance drug - cellcept perhaps?

Did you have your first 20mg dose of mtx? Did you notice a difference? I noticed a bit of a difference at 15mg, but for me it was still not tolerable.

[ScreaminMeanie]

Yes, had my first 20mg dose on Friday. Doc says it will take several weeks to notice a difference in the mtx effects, but I would swear I don't feel as bad today as I usually do on Mondays!

Did you do the pills or the injectable form of mtx? I noticed I had fewer side effects after I switched to the injectable form.

[Chris G]

I did both pills and injectible. I also thought that I had fewer side effects on in the injectible, but that proved to be short lived. For me there was a constant cognitive "fog", but like you, it was worse in the couple of days immediately following my dose. So, I respectfully disagree with your doctor...........although it will take a while to get rid of the long term effects, I think you should see some improvement each time you decrease. I did, but not enough for my liking, so I finally insisted that I had to stop taking it all together.

I hope you start to feel MUCH better as you decrease!!!

[ScreaminMeanie]

Since the injectible form is currently on intergalactic backorder, I had to take my weekly dose in pill form last night. It made me feel so bad, I had to go to bed early. Anybody else bumping up against this outage?

[Lightwarrior]

Since the injectible form is currently on intergalactic backorder, I had to take my weekly dose in pill form last night. It made me feel so bad, I had to go to bed early. Anybody else bumping up against this outage?

I have always taken the Methotrexate pills and I do feel very tired, wiped out the next day. I take them on Saturday night so it doesn't interfere with my work week. Then I feel like I'm cheating my daughters and grandchildren.

[Chris G]

Meanie - what will your maintenance dose of mtx be? Are they planning to leave you at 20mg?