PDA

View Full Version : Methotrexate, Pred Stepdown & advice



wgrebel
10-24-2010, 06:05 AM
Hello fellow Weggies. I've been a Weggie one year today. I was taken off CellCept a month ago today and put on Methotrexate. I could not tollerate the CellCept because of the GI problems it caused. I have tollerated the Methotrexate very well. My numbers are showing incative Wegener's & my doctors are beginning a stepdown from 20 mg of prednisone next month on November 10. I have researched and read that from 20 to Zero is the worst as far as stepping down from preds. If anyone has a schedule available for a stepdown after 20, let me know. I have been working at home FULL TIME since Middle August and it is great. It is wonderful to be busy with work and family and not just being sick.

WG REBEL

Jack
10-24-2010, 06:43 AM
You should be OK coming down from 20 to 10 but then it can become tricky. The last 5mg are by far the hardest because your own adrenal glands have to wake up and start doing some work again. Very often they are reluctant!

elephant
10-24-2010, 08:30 AM
When I was on 20 mg prednisone I tapered 2 1/2 mg every 4 weeks( 17 1/2, 15, 12 1/2, 10mg).Once Starting with 10 mg, I tapered down to 1 mg a month, but that didn't work for me, so I ended tapering 1/2 mg a month....I am down to 6 1/2 mg of prednisone now.

DEE
10-24-2010, 04:02 PM
im on same plan as Elephant was on 20mg now down to 15mg this month going down 2 1/2 mg seems to be ok at the moment

gutless
10-26-2010, 12:46 PM
How do you know if the amount you've reduced to is not okay? I'm currently down to 10mg from 20 (decreased 1/2 pill every 2 weeks) and will see the doctor soon to get further instructions.

marta
10-26-2010, 01:01 PM
Hi WG Rebel, I too have just been taken off cytox (cyclophosphamide) last week and am currently immunosurpressant free for 7-10 days before I start methotrexate on Halloween - spooooky.
Ironically I'm actually a little anxious about not being on chemo, even though I've been looking forward to the day, but now it feels like my security blanket has been taken away. Back to pred though. I was going down 2.5 every 2 to 4 weeks (that was what the doc had instructed) From 20 to 17.5 I took three weeks, and then two weeks to 15 then two weeks to 12.5. I'm at 12.5mg now and have been instructed to stop the wean for about a month and a half to ensure the methotrexate is working it's magic. I've been feeling a little crappy the last couple of weeks - very up and down in that some days are a lot better than others - but when it's down it involves some crazy sharp headaches and ear aches. There are too many variables though to pinpoint any correlation - I got a flu shot, I went down 2.5mg of pred, I also had a bit of a cold and there are lots of sickies around me, plus now I'm cytox free (but that came after the symptoms) so weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee.... the rollercoaster ride continues.

jola57
10-26-2010, 05:42 PM
I am on a similar plan as above. I am down to 4mg and holding for almost two months. Since I am going on a trip, I will not start to go down until I am back and rested. I will then taper only 1/2mg per month. I knew that I tapered too quickly because of the pain, it was just like in the beginning. I quickly go up 1mg for a couple of days and if I feel better go down 1mg again. good luck in tapering, go nice and slow. better to be slow now than having to go back to high dose quickly later.

drz
10-29-2010, 11:21 AM
When I was on 20 mg prednisone I tapered 2 1/2 mg every 4 weeks( 17 1/2, 15, 12 1/2, 10mg).Once Starting with 10 mg, I tapered down to 1 mg a month, but that didn't work for me, so I ended tapering 1/2 mg a month....I am down to 6 1/2 mg of prednisone now.

This seems like a very conservative step down. What happened that it didn't work out.

elephant
10-29-2010, 11:24 AM
Once I got down to 5 mg my ears and sinuses ( mini flare) were causing havoc...feeling full ears and stuffiness. So I had to go back up to 10 mg and stayed on that for months and then finally weaned 1/2 mg every 4 weeks. I'm down to 6 1/2mg and my left sinus is starting to cause me trouble.

Sangye
10-30-2010, 12:14 AM
Elephant, are you still doing the Bactrim DS every day? I remember that I keep asking you this, but I don't remember what you keep answering. :laugh::blink:

elephant
10-30-2010, 01:58 AM
Yes I am. My Rheumatologist thinks I have a mini flare in the left maxillary. I don't like the idea being on a antibiotic everyday, plus the other medicines I take. Oh well! That's OK Sangye, I forget alot, I went to pick up my son's report card today and the lady at the front desk asked me, "who's his homeroom teacher?" Five seconds later, I stated her name. I'm sure ...Ding, Ding went through her brain!

Sangye
10-30-2010, 02:10 AM
I hope it calms down quickly. Tell that Wegs dog to go back to sleep.

elephant
10-30-2010, 09:01 AM
I was telling my Wegs dog to go to sleep last night, that Bacrim keeps me up at night!

Sangye
10-31-2010, 01:17 AM
Elephant, go look over the Pitta (Fire) reducing foods again. You might be able to keep the inflammatory process under control at this point by using diet and supplements. Are you taking fish oil (anti-inflammatory)?

elephant
10-31-2010, 02:14 AM
I am eating wild Alaskan sockeye salmon every other day from a can. I will look at the Pitta info today. Thanks Sangye!

Sangye
10-31-2010, 12:49 PM
I have a feeling you might be right on the edge where you could keep your pred at a lower dose by controlling general inflammation via diet and supplements.

ScreaminMeanie
12-09-2010, 08:17 AM
I too am on mtx and in the process of stepping down my pred. One of the most noticeable things that's happened is that every evening (about 12 hours after I take the pred in the a.m.) I feel like I have a fever. I can't seem to get warm, and my skin feels hot to the touch. However, when I take my temp, it never shows higher than about 98.0F. This usually persists until I get into bed, and then I'm hot! Especially my feet. Has anybody else experienced something like this?

Psyborg
12-09-2010, 08:25 AM
I got that a bunch with CTX, but not so much now that I'm on MTX.

talentx7
12-09-2010, 11:48 AM
I just got this tappering off pred. schedule. Its a long one...
Day 1......25mg (current dose) day 12......10mg
2......20mg 13......25mg
3......15mg 14......5mg
4......20mg 15......25mg
5......25mg 16.......5mg
6......15mg 17.......25mg
7.......25mg 18.......0
8.......15mg 19......25mg
9.......25mg 20......0
10......10mg Then Carter alternates 20 one day 0mg the next until they reduce again. Does this seem normal to reduce this way??
11.......25mg
12.......10mg

Sangye
12-09-2010, 12:04 PM
I have never seen a taper like that. Alternating days, yes. But not alternating by 25 mg.

How long has Carter been on 25 mg?

elephant
12-09-2010, 01:03 PM
I never seen that either. The highest dose I've see alternating days is 10 mg.

talentx7
12-09-2010, 03:01 PM
Sangye...Carter has been on 25mg since Nov. 15. He has reduced 5mg a month until now.

talentx7
12-09-2010, 03:04 PM
Elephant, I'm glad you have at least heard of alternating, but I thought it seemed different than what I have read here. Maybe its because he is so young, or been on it so long???

Sangye
12-09-2010, 03:24 PM
I think my body would absolutely freak out if I alternated that much each day, especially the days where he takes a very low dose. If they're only trying to get him from 25mg to 20mg in 2 weeks, why wouldn't they just lower it by 2.5 mg each week? So 1st week would be 22.5mg and 2nd week would be 20mg. That's easy on the body.

I guess you could try out their plan and ask them to change it if it's troublesome.

pberggren1
12-09-2010, 04:21 PM
That type of taper just sounds too dangerous to try.

DEE
12-09-2010, 04:44 PM
i was on 25mg preds for a long time and have started tappering but onlt 2.5 mg everu sic weeks and then only with the review of wg consult even with that anount i notice a difference better on the day i take 12/2,5 mg than the dayi take 10mg

Jack
12-09-2010, 09:37 PM
The alternate day method is widely published and must be used by many, but like most people on here, I could not go for a day without pred and not get hit by the effects of withdrawal. I feel ill by the afternoon if I accidentally miss a dose!

Sangye
12-10-2010, 12:44 AM
I don't understand the reasoning for alternate day dosing. Pred doesn't stay in the body for very long, so it seems that skipping a day would stress the adrenals a great deal. I see Dr Seo next week and will ask him. He's mentioned alternate day dosing at low doses but hasn't seemed too enthusiastic about it.

julia
12-10-2010, 12:46 AM
I am tapering pred 5mg one day. 0 the next. I have been doing this for about8 weeks. I was very reluctant to try it. I have been on pred since june of 09. I do notice some discomfort at times. This is different from the pain pre weg dx. I am also more emotional. Lately if I do notice these symptoms it tends to be on the day I take the pred. (this surprises me).

I had 2 instances of taking the pred 2 days in a row. 2 weeks into doing alternating days I took it on Sunday and Monday( I had a water arobics class Monday night and was nervous that with the added exercise my body would not tolerate the day without pred) It was just me being paranoid no symptoms to back it up. I did not notice much difference.
2nd time was around Thanksgiving. I had done too much that week. I was tired , I had foot pain (I have had foot discomfort in the past but this was different and stronger) I took the pred on a day I was not scheduled to take it. I did feel it helped and my body may actually have needed the extra dose that week.

The taper is going o.k. I did not discuss with my doctor the next step in the taper. I really was expecting to go from 5 everyday to 4.5 or 4. With the holidays this month I thought I would wait until after the new year to call.

The good news with pred reduction is I have not gained any weight since May. Lost about 5 lbs. Many,Many more to go.

Hope all goes well for your son.

Sangye
12-10-2010, 01:33 AM
I am tapering pred 5mg one day. 0 the next. I have been doing this for about8 weeks. I was very reluctant to try it. I have been on pred since june of 09. I do notice some discomfort at times. This is different from the pain pre weg dx. I am also more emotional. Lately if I do notice these symptoms it tends to be on the day I take the pred. (this surprises me).


Julia, when do you get those symptoms-- before you take the pred for the day, within a couple hours of taking it, or many hours after taking it?

talentx7
12-10-2010, 01:54 AM
I will keep everyone updated on this wierd taper. I will also keep a log for the doctor. We see them (kid dr. and rhummy) in 3 weeks when we go for another IVIG. Hopefully his body doesn't go crazy, but i will call dr. if he seems like he isnt doing well.

Sangye
12-10-2010, 02:00 AM
I hope it goes well. A couple things to look out for that indicate adrenal stress from inadequate pred: cries easily and without reason, depressed or blues, unusual sleepiness (especially in the afternoon), more tired than usual. If you notice a big difference in how Carter functions on the pred days vs the no-pred days, let your doctor know.

talentx7
12-10-2010, 04:20 AM
Thanks, i will.

julia
12-10-2010, 06:48 AM
Julia, when do you get those symptoms-- before you take the pred for the day, within a couple hours of taking it, or many hours after taking it?

I usually take the pills around 8 or 9. The symptoms are usually more noticeable in the afternoon into the evening.

Sangye
12-10-2010, 02:06 PM
And you feel okay the next day (ie, on the no-pred day)?

julia
12-10-2010, 04:15 PM
And you feel okay the next day (ie, on the no-pred day)?


I don't want to imply that one day i feel good and the next I don't. In the past few weeks if I have some discomfort it has tended to fall on a day I took pred. It does not happen all the time.

I was not expecting this taper to work. I went into it thinking that I would call the doctor in a week because I would not be able to tolerate the "off pred" days.

BrianC
01-08-2011, 03:09 AM
This is all great info for me, I just started a course of Methotrexate to try and reduce the Pred. Had a flare up in 2009 , sinus and lungs, and been on 60mg pred a day along with azathioprine. Im not tolerating the pred very well, now got high intraocular pressure so have to take drops for that and got a bubble of fluid on the back of my left retina. Getting about 3 hours sleep a night too, been like this about 8 months. So to reduce the pred its MTX for me, 20mg weekly started on a thursday and folic acid on a sunday. Taken 3 lots now and to date not noticed any difference. Prior to the flare I was on 7.5mg pred on alternate days, had been for a year or so too, without any issues at all. And I put all the weight back on I lost when on alternate days. Booo.

JanW
01-08-2011, 03:25 AM
That's a really long time to be on a such a high dose of pred, as I am sure that you know. Did your doctor give any thought to raising your aza and/or switching you to another immunosuppressant? Current research suggests no longer than 3-6 months of any pred at all in order to induce remission.

BrianC
01-08-2011, 03:35 AM
Yeah we increased the azathioprine at the same time as the pred by another 50mg a day but I was still getting the sinus pains, nose bleeds, headaches etc. These have now mainly gone since the addition of MTX, hurrah. Im back at the docs next week so hopefully will be reducing the pred then.

drz
01-08-2011, 03:58 AM
Yeah we increased the azathioprine at the same time as the pred by another 50mg a day but I was still getting the sinus pains, nose bleeds, headaches etc. These have now mainly gone since the addition of MTX, hurrah. Im back at the docs next week so hopefully will be reducing the pred then.

How much azathioprine are you taking now? What side effects do you have to watch for with this drug?

BrianC
01-10-2011, 08:59 PM
I have been on 200mg since diagnosed, I have lung and sinus involvement, which was 5/6 years ago and whilst disease quiet 7.5 mg pred on alt days. As for the aza I have tollerated this well with none or minimal side affects. Side affects range from nausea, diarrhea, muscle/bone aches to bleeding abonormal pain diarrhea, jaundice and hair loss. Only thing I noticed was the occasional ache and pain, as with any of these drugs keep away from people with colds/flu and especially chicken pox or shingles. At the start of treatment I had weekly blood tests to make sure it want messing with kidneys and wbc etc but soon extended these to every other month.

JanW
01-11-2011, 12:49 AM
You're taking aza and mtx, Brian?

BrianC
01-11-2011, 12:52 AM
At the moment yup, started the MTX 4 weeks ago but reduced the aza by 50mg and still taking the pred. Im seeing Doc tomorrow so hopefully we can reduce further.

Sangye
01-11-2011, 02:39 AM
I don't have anything to add, other than to say I love your avatar, BrianC. Cute doggie!! :biggrin1:

BrianC
01-14-2011, 10:26 PM
Whoo hoo - Start tapering the pred starting this week, down 10mg a day for now then review in a couple of months.

B.

Psyborg
01-14-2011, 11:31 PM
Great news there. I hope you don't have any issues tapering :)

Sangye
01-15-2011, 02:45 AM
That's terrific, Brian. What were the old and new doses?