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View Full Version : Decreasing pred again!



ScreaminMeanie
07-30-2011, 02:25 AM
For the last month or so (probably 5 weeks), I've been alternating 5 and 2.5 mg of pred. Doc wants me to go down to 2.5 mg daily, then in a month, alternate 2.5 mg and 0, then in another month, go to 0.

(Where's the "fingers crossed" smiley?) :biggrin1:

So far, no problems with alternating 5 and 2.5. Before the rtx, every time I'd try to go below 5, the WG would flare. Badly. So it's seems like before the rtx it was only the pred keeping it under control, and the mtx has done very little. Anyway, things are looking better now. And I still need that "fingers crossed" smiley!

NicShaf
07-30-2011, 05:03 AM
Here's another "fingers crossed" smiley. :)

Hope everything goes smoothly.

Jack
07-30-2011, 05:54 AM
http://t3.gstatic.com/images?q=tbn:ANd9GcTnbvRRAD5Nr919hNv972XlqNFkqWj5z bn1uJIiPPELUowuKqc7



Hope the plan works!

ScreaminMeanie
07-30-2011, 06:43 AM
http://t3.gstatic.com/images?q=tbn:ANd9GcTnbvRRAD5Nr919hNv972XlqNFkqWj5z bn1uJIiPPELUowuKqc7



Hope the plan works!


LOL! Yep, that's the one I need!

drz
07-30-2011, 10:20 AM
http://t3.gstatic.com/images?q=tbn:ANd9GcTnbvRRAD5Nr919hNv972XlqNFkqWj5z bn1uJIiPPELUowuKqc7



Hope the plan works!

I like that smiley and think we need to have it around more often. Thanks Jack. Hope all your home improvements go well too.

Sangye
07-30-2011, 11:29 AM
That's awesome!! Love da smiley.

jola57
07-30-2011, 01:07 PM
Hope it works for you this time, yeay to Jack for the smiley

Psyborg
07-30-2011, 09:17 PM
Congrats :)

sadpixie
07-31-2011, 04:04 PM
I hope the tapering continues to go well!

elephant
08-01-2011, 11:24 AM
That is good news, so glad that works for you!

Chris G
08-02-2011, 10:13 AM
Screamin -
I can't remember.......when were your rtx infusions? I think they were a few weeks before mine (May 13 & 27). My pred taper stalled out at 15 about 5 weeks ago - I went back up to 17.5 for a few weeks, now I'm back at 15 again. I think we tapered a little too fast in my case. I seem to be holding better at 15 this time. I'll be trying 12.5 in a week or so (maybe longer - I'm a little gun shy).

jola57
08-02-2011, 03:34 PM
Chris, I tapered very slowly from 15 on down, actually by 1mg per month or more. When you hit 10 go verrrry slow. I have been holding on 4mg for the past 4 months because of lowering mtx down to 7.5 To both of you good luck in the slow lane.

Chris G
08-03-2011, 04:47 AM
Boooooo! I hate life in the slow lane! But I guess it's necessary........I'll be careful.

elephant
08-03-2011, 11:48 AM
Hey Jola, Im hanging on to 4 mg of prednisone for a while. In Sept I think I will try 3.5mg and stay on for a couple of months....im moving at a turtle's pace..

drz
08-04-2011, 02:12 AM
Chris, I tapered very slowly from 15 on down, actually by 1mg per month or more. When you hit 10 go verrrry slow. I have been holding on 4mg for the past 4 months because of lowering mtx down to 7.5 To both of you good luck in the slow lane.

How slow do you need to go? I am trying 1/2 mg every two weeks or 1 mg a month but wonder if that is too fast. Currently at 6 1/2.

elephant
08-04-2011, 09:26 AM
I would try to go very slow after 5 mg of pred, thats when it starts to get very hard to wean. I rather go very slow then start all over again. Going down 1/2 mg every 4 weeks, should do it...hopefully.

mishb
08-06-2011, 08:14 PM
I have just had a month of 7.5 one day and 5mg the next, alternating each day for a month.
This month I go 7.5 one day and then 5mg for the next two days and then 7.5 then 5 for the next two etc.
Next month is just 5mg and I think that is where they want me to stay for a while because of my RA.

I'm not sure if it is just in my mind but I feel like I can tell the difference between the 7.5 and 5 as my knees and hands seem to have a slight ache to them, it's not pain as such but an achy tiredness.

Good luck to everyone on their taper mission

drz
08-07-2011, 12:17 AM
How slow do you need to go? I am trying 1/2 mg every two weeks or 1 mg a month but wonder if that is too fast. Currently at 6 1/2.

I am going down to 6 1/4 next week and then 6 for next step. I think I will try 3 weeks between steps too. I found I was extremely fatigued for several days when I went from 7 to 6 1/2 which surprised me since i didn't think 1/2 mg would be that noticeable.

julia
08-10-2011, 08:04 AM
My memory is shot and I am not sure I wrote this down anywhere but, Last October I believe my doctor had me do 5mg pred one day zero the next. I did this for about 3-4 months than he had me do 2.5 one day zero the next. I believe his plan was than to go to zero after 4 months.

Instead I went from 2.5 one day zero the next. After 2 months I did 1.25 one day and zero the next. I did 1.25 one day zero the next for about 6 weeks. Than I took 1.25 about every third day for 2 weeks. After this I stopped taking pred.
I did not intend on not following the doctors schedule but I was using up my 5mg pills cutting them in half. When these ran out I started using the 2.5 mg pills but was in the habit of splitting the pills so after about 10 days I realized what I had done but really was not having trouble with the drop so I stuck with it.

I have to say when I was at 5mg one day/ zero the next. Than dropped to 2.5 one day zero the next, it was one of the easiest drops I had. I barely noticed it.

ScreaminMeanie
09-22-2011, 05:38 AM
Screamin -
I can't remember.......when were your rtx infusions? I think they were a few weeks before mine (May 13 & 27). My pred taper stalled out at 15 about 5 weeks ago - I went back up to 17.5 for a few weeks, now I'm back at 15 again. I think we tapered a little too fast in my case. I seem to be holding better at 15 this time. I'll be trying 12.5 in a week or so (maybe longer - I'm a little gun shy).


Sorry I didn't see this sooner, Chris. We did rtx at about the same time - mine was April 29-May 20 - only I had 4 doses, and I guess you had two. I was lucky in that I was already down to 5mg daily when I started the rtx, so I didn't have far to go.

I'm now down to alternating 2.5 and 0 mg. Two more weeks and I'm supposed to stop taking it altogether. I've noticed a little "draggy" feeling the first couple of days after I went from 5/2.5 to 2.5 every day, and from 2.5 every day to alternating 2.5/0. That feeling has gone away after just a day or two, though.

I got a cold from an inconsiderate co-worker two weeks ago that almost immediately became a sinus infection. My rheumy is out of town for a week, so I went to see my GP, and he has me on doxycycline. Two days in, and I'm much better. I have to be on it for 14 days, so I'm probably going to wait another week after I'm done with the anti-b before I stop taking the pred. I might also want to keep the Bactrim going a couple weeks longer than the pred, as well.

Fingers still crossed!!!

Sangye
09-22-2011, 07:53 AM
That's great! :thumbsup:

ScreaminMeanie
10-21-2011, 05:50 AM
I've now been off pred for a month. Had blood work yesterday and everything was perfect! I'll see my rheumy next week, and we're going to start tapering me down to a maintenance dose of mtx. I'm really looking forward to that. Seems like since I got off the pred, I've been having worse side effects from the mtx than ever before - maybe just a cumulative effect of long term use.......

delorisdoe
10-21-2011, 06:14 AM
I was told that as I lower prednisone the side effects of cytoxan will be more noticable as the prednisone will mask some of the effects of cytoxan. Not only was I told this but this proved to be true for me.

ScreaminMeanie
10-21-2011, 09:40 AM
I was told that as I lower prednisone the side effects of cytoxan will be more noticable as the prednisone will mask some of the effects of cytoxan. Not only was I told this but this proved to be true for me.

I had wondered about that. Never asked my doc, but did some googling and couldn't find anything to support the notion that pred masks the effects of mtx. But it sure seems like the side effects of mtx have gotten progressively worse, the less pred I took.

Sangye
10-21-2011, 01:29 PM
What symptoms are you feeling?

Kami
10-22-2011, 07:38 AM
I am so happy for you! How much Mtx were you taking and where are you at now, or what is your plan for the MTX? Are you planning on more Rituxan or not now that you are in remission? I am so very very happy for you!!!!!!!!!!

ScreaminMeanie
10-23-2011, 12:54 AM
What symptoms are you feeling?

Mostly the nausea and diarrhea. Sometimes the dizziness catches me by surprise, too.

Sangye
10-23-2011, 01:52 AM
I don't think pred will mask either nausea or diarrhea. If the dizziness is coming from inner ear inflammation, then the pred could mask that, since it's anti-inflammatory. But if it's just a side effect of the mtx, then pred wouldn't make a difference.

ScreaminMeanie
10-28-2011, 12:46 PM
The reason I think it's the mtx is that it all gets worse starting about 24-36 hrs after I do my injection every week. It's bad for 2-3 days, then starts getting better. The last two days before I do the shot, the symptoms are almost unnoticeable. The good news is, I get to reduce from 25mg to 20mg starting this week.

I'm still having some foot and leg pain since taking the Levaquin a few weeks ago. It's not in my joints, and there's no swelling like I was having before the rtx, so I'm hoping that it's just side effects from either the Levaquin or the mtx. It also diminishes in severity the farther away I get from my last mtx dose. I talked to my doc about it today and showed her where it was happening. She agreed it sounds more like side effects from the Levaquin and that the places where I'm having pain is in my tendons, not my joints (mainly around my achilles tendon, top and bottom). I had taken my last dose of pred about 5 days before I started the Levaquin, and the pain didn't start until I started the Levaquin, so it's unlikely this is related to stopping pred. BUT, just in case, I am to keep in close contact with doc until the pain goes away.

Chris G
10-29-2011, 01:26 AM
How long have you been on mtx meanie? I definitely noticed that the side effects got worse the longer I was on it. To the point where I couldn't function mentally. I tracked my side effects, and like you, it was much worse for the 2 or 3 days after my weekly dose. By the time it was time for my NEXT weekly dose, I was almost my normal self. I dreaded and resented every Monday.

I almost had to insist that it was the mtx which was causing my misery, and the docs finally let me stop taking it. I'm a whole new person now that I'm off of it.

I was supposed to have begun my pred taper below 10mg last week. But my eyes have been puffy lately, with a bit more nasal crusting. I'm scared! Today I took the leap, and took only 9mg. I think I will try the every-other-day method, that you guys were talking about. Wish me luck.

Oh, and they're working on getting me scheduled for a 2nd round of rtx - end of Nov. or early Dec.

ScreaminMeanie
10-29-2011, 02:18 AM
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
11-01-2011, 03:45 AM
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
11-01-2011, 05:43 AM
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
11-01-2011, 08:47 AM
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
11-01-2011, 09:56 AM
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
11-01-2011, 11:50 AM
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
11-05-2011, 10:37 AM
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
11-06-2011, 01:14 AM
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
11-06-2011, 11:04 AM
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
11-08-2011, 04:11 AM
Meanie - what will your maintenance dose of mtx be? Are they planning to leave you at 20mg?

ScreaminMeanie
11-08-2011, 07:34 AM
15 mg is what she has told me previously. I'm hoping she'll be okay with me going off it next April (1 year from rtx treatment).

Chris G
11-08-2011, 07:35 AM
How soon do you go to 15mg?

ScreaminMeanie
11-10-2011, 12:44 AM
Probably after my next blood work comes back good. I'm thinking of putting it off for a week since I had a flu shot yesterday, and don't want that to interfere with any of my counts. OTOH, I want to know which way I'm headed ASAP. I need to do some research and see if I can find out how long the flu shot may elevate the body's immune response....

Chris G
11-10-2011, 05:05 AM
I can't see the flu shot at all affecting the markers they look for with wg, like ESR, CRP, and ANCA. Maybe white count, and neutrophils, etc. but not the major wg markers.

Good luck on getting it reduced soon!!!! I just know you'll feel better @ 15mg!

ScreaminMeanie
11-10-2011, 06:00 AM
I like your answer, Chris! I've done some Googling today as well, and can't find any reason to delay my lab work. In fact, if I waited another week, it would be T-giving week, and I would be unlikely to hear back from my doc as quickly. So, next week it is!

Kami
11-13-2011, 02:53 AM
[QUOTE=ScreaminMeanie;48795]My doc says that with any luck I should not have to do rtx again. *fingers crossed on that one* QUOTE]

That's great news! I think we did rtx at the same time. My doc says he wants me to do it again so for now anyway it looks like I will go again next May, one year after the first time. I am on 20 mtx and 5 pred. Right now all my numbers are good, my next labs are in December.

ScreaminMeanie
11-13-2011, 03:35 AM
I certainly wouldn't mind doing it again if I needed to, as long as I still have insurance. The hospital has really good food! LOL

I'm on 20mg mtx, 0 pred, and am going in for labs on Monday (since I have the day off anyway).