MTX without prednisone

[maria garcia]

Is anyone taking MTX without prednisone?? My daughter like you guys know, was taking pred 10 mg and 15mg of MTX for two months. Her doctor is tapering her dose of pred. now she is on 5mg and her symptoms are coming back. How long should it take for MTX to start working. Im disappointed bcse I thought the MTX was working bcse her symptoms went away but now I see it was the prednisone all along. Her doctor wanted to keep her on MTX alone and I don't feel it is going to happen.

[Al]

Is anyone taking MTX without prednisone?? My daughter like you guys know, was taking pred 10 mg and 15mg of MTX for two months. Her doctor is tapering her dose of pred. now she is on 5mg and her symptoms are coming back. How long should it take for MTX to start working. Im disappointed bcse I thought the MTX was working bcse her symptoms went away but now I see it was the prednisone all along. Her doctor wanted to keep her on MTX alone and I don't feel it is going to happen.

MTX without pred is rather unusual, Maria. Sometimes this regimen is used for arthritis, but rarely for other purposes.

Al

[maria garcia]

When MTX starts working why still take prednisone? I think he might have been testing if the MTX was working.

[gunnyl]

My Rheumy is going to start drawing down the cytoxan and move me to Methotrexate starting Friday. I'll talk to her about the process when I meet with her and report back.

[maria garcia]

My Rheumy is going to start drawing down the cytoxan and move me to Methotrexate starting Friday. I'll talk to her about the process when I meet with her and report back.

Are you still taking prednisone? why are you being switched?

[gunnyl]

I'm in remission according to my Rheumy, she is going to lower the cytoxan and start the methotrexate to let it build up as she lowers the CTX. I am down to 5mg of Prednisone starting this week. Noticing some flaring in my ears this week though. But Cardio dropped the beta blockers and changed my status to as needed so I have more energy now! I'll post Friday and layout the Prendnisone plan with the MTX.

[pberggren1]

Maria, It all depends on how high dose she was on and for how long. How long has she been on pred and what doses for how long? She may be tapering too fast. What symptoms is she having right now?

[maria garcia]

Maria, It all depends on how high dose she was on and for how long. How long has she been on pred and what doses for how long? She may be tapering too fast. What symptoms is she having right now?

10 mg of prednisone for two months before doctor decided to taper. Her symptoms red eyes and stuffed nose. Symptoms cleared after taking pred and Mtx tapering down the prednisone to o from 10mg will take a month. This weekshe is on 5 mg will start 2.5 and 5mg every other day next week. She has a schedule until she reaches 0. She is half way there and her symptoms are the same as before meds, red eyes stuffed nose. She is still taking mtx 15 MG. I don't think MTX has been working though her Anca was alot lower but symptoms only got better with prednisone.

[pberggren1]

So she went straight from 10 to 5? That seems to fast to me. I would go at least 1mg every 2 weeks until down to 5 then go 1mg per month. That is the fastest I would go. How is her energy level? Any other symptoms besides red eyes and stuffed nose?

[maria garcia]

So she went straight from 10 to 5? That seems to fast to me. I would go at least 1mg every 2 weeks until down to 5 then go 1mg per month. That is the fastest I would go. How is her energy level? Any other symptoms besides red eyes and stuffed nose?
10 for a week then 10, 5, 10, 5, for a week then 5 for another straight week them 5, 2.5, 5, 2.5, 5 etc then 2.5 for a week and so on one month to go from 10 to 0. She only took the 10 mg for two months :(

[pberggren1]

I never did like that type of tapering. I prefer just stright instead of alternating like that.

Monitor her closely and if she gets worse then call the doc.

[janNaz]

Is anyone taking MTX without prednisone?? My daughter like you guys know, was taking pred 10 mg and 15mg of MTX for two months. Her doctor is tapering her dose of pred. now she is on 5mg and her symptoms are coming back. How long should it take for MTX to start working. Im disappointed bcse I thought the MTX was working bcse her symptoms went away but now I see it was the prednisone all along. Her doctor wanted to keep her on MTX alone and I don't feel it is going to happen.

Hi there. I've been on mtx since Sept 2010, pill form at first, then switched to injection-type (20mg) in Nov 2010. I was also on prednisone since WG diagosis in March 2010, then began tapering about a month after starting mtx up until Nov 2011, when I stopped pred completely. I remember feeling the familiar (tho not as painful) achiness in my fingers and feet and fatigue creep back into my body for about 2-3 days after some of the tapers, but thankfully my body "accepted" the change and the pain or anything else did not worsen. We haven't begun tapering the mtx but that is the next step in my treatment plan. My rheumy doctor (at my request) consulted with Dr. Chung, WG specialist at UCSF, about my treatment. Thus far, I've been doing good on mtx alone so plan to discuss the mtx taper at my next appt in March. I am, however, a bit hesitant about the mtx tapering, wondering if it'll be too soon....but baby steps.....as I do have hope and pray to one day be off all meds, not just for myself but for all of us.

[mishb]

I tapered from 10mg pred down to 5mg over a 3 month period and, apparently, cannot go lower than 5mg.
The symptoms were creeping back in, and the blood results were showing signs of increased inflammation.

I was given the option to either increase the pred back to 10 or to increase the MTX from 15 to 20.
In the end the choice was taken out of my hands and the head honcho rheumy guy said, we will not increase the pred but increase the MTX.
It took another 6 weeks for the increase in MTX to show signs of improvement in the blood results.

So now that is where I stay ..... 5mg pred and 20mg MTX, and that seems to suit me fine (most days)

[jola57]

Maria, I have been on 20 mg mtx for 2 years now, when I started I was on 30mg pred, I think, and I started lowering real slow. Because of liver function tests comming back bad, my rheumy lowered to 15 after 9 months and 6 months ago even more to 7.5mg mtx. All along I was tapering my pred and now I am at 2mg. BUT I took it very very slow. there was some hurt in fingers and joints for 3 to 5 days after tapering and so I believe that the only way is to go extremely slow. Your doctors regimen is far TOO quick in tapering, no wonder there is a flare. I would ask why such quick tapering and what literature told him to go so fast. The reason I went so slow is because I flared after I was taken of cyclophosphamide just after 6 months. It was a bad flare and I had to go back on cyclo for 1 year. Question your doctor and make suggestions, do not be afraid to let him know that you heard it on this forum from people who are going and have gone thru the same experience.

[reb876]

Hi Jolanta my name is Steve from Australia, I have wg in Kidneys on 100mg cyclo and 60mg pred, approx one month now, my Kidney function was at 12% when in hospital and now at 23%, so it is working for my kidneys but making my red blood cells readings low, getting close to anemia, they dropped me back to 50mg cyclo one day and 100 the next ultinating each day, thinking that it might be the cyclo causing the low readings, how did they taper you off the cyclo after 6 months, I am taking tablet form, which only comes in 50mg, they wanted to drop me to just 75 and 100 ultinating but after I informed them that it is inpossible to split them tablets in half, they said take 50, you got to wonder about these docs sometimes they make me nervous, you sure have to fill your head with as much knowledge as possible with this disease and be proactive with the docs in making some of the decisions I learnt very fast. Where has the wg affected you? Thank you so much for your input and I wish you all the best for good health.

Steve

[gunnyl]

I was diagnosed in August. When I was discharged they started me on 200mg CTX, 80mg Prednisone; they tapered the prednisone and I am down to 5mg Prednisone and 150 CTX. My prednisone came down slowly. I went from 10 to 7 1/2mg for 3 weeks before I came down to 5mg. They are going to start the transition to Methotrexate Friday.

[Chris G]

10 mg of prednisone for two months before doctor decided to taper. Her symptoms red eyes and stuffed nose. Symptoms cleared after taking pred and Mtx tapering down the prednisone to o from 10mg will take a month. This weekshe is on 5 mg will start 2.5 and 5mg every other day next week. She has a schedule until she reaches 0. She is half way there and her symptoms are the same as before meds, red eyes stuffed nose. She is still taking mtx 15 MG. I don't think MTX has been working though her Anca was alot lower but symptoms only got better with prednisone.

The pred taper is too fast. And too soon in my opinion. They haven't even had the time to determine if mtx is going to be the proper control drug for her.

I'm sorry, but I still don't think your doc knows what he's doing.

[Sangye]

Maria, it would definitely be too fast a taper if she had been on higher doses of pred, but it might not be too fast considering that her highest dose was 10 mg and she's only been on that for 2 months.

It sounds more like she hasn't been on it for long enough. Mtx takes at least a month to start working, so she's really only been treated for 1 month. That's not nearly long enough to sing the Wegs dog to sleep.

As far as people being on mtx alone (without pred): There are many people who do stay on mtx only to maintain remission. Also, JanW has been treated only with mtx and not pred because her disease activity was mild enough not to require pred.

[gunnyl]

I agree with Chris G and Sangye, it took 5 months for me to go from 80mg Pred to 5mg. And there were a lot of blood tests in between. For the first two months it was every week, then every two weeks till it got to once a month. My taper was slow with blood tests and visits for confirmation that it was working. 4 Months out I was still on 200mg CTX and 5 Months out, I'm still on 150mg of CTX and they are moving me to MTX as a maintenance drug. My Dr isn't offended when I give her other resources and Doctors that I've found and she regularly seeks council from her Peers and Vasculitis Specialists. She's come back a couple weeks after telling me something and told me that newly released long term research has given us other options. I LOVE my Doctor! She has been on top of this from the start. Seek some second opinions! If I wasn't completely confident in her I'd be somewhere else. Weg's is not something you take for granted, lives are at stake literally.

[Chris G]

Maria, it would definitely be too fast a taper if she had been on higher doses of pred, but it might not be too fast considering that her highest dose was 10 mg and she's only been on that for 2 months.

It sounds more like she hasn't been on it for long enough. Mtx takes at least a month to start working, so she's really only been treated for 1 month. That's not nearly long enough to sing the Wegs dog to sleep.

As far as people being on mtx alone (without pred): There are many people who do stay on mtx only to maintain remission. Also, JanW has been treated only with mtx and not pred because her disease activity was mild enough not to require pred.

Exactly - thanks for saying it better than I did Sangye. She hasn't achieved remission after only 2 months on mtx. She can't be maintained with just mtx yet, so the pred reduction is too soon. Also, mtx isn't a heavy duty drug. It's not going to get her into remission quickly.

[Sangye]

What Female Chris said. :biggrin1:

[JanW]

Boy Sangye has a good memory. I have been treated by mtx alone except for one medrol pack to determine whether I needed to go up in mtx (which I did). My disease activity is classified as moderate because while I wasn't extremely symptomatic, the WG did to real damage to my windpipe and my nose. I was definitely achy, extremely run down and had tons of problems with my ankle for about a year before dx, nosebleeds, stuffed up nose/ears, etc. but once I started taking mtx the numbers starting coming down really quickly...I probably felt better within 3 months and was in drug induced remission within 6 months. I have not had a problem reducing mtx to 5 mg, which is where I've been probably since the beginning of the fall or so, in anticipation of having surgery on my nose (required to be at 5 or less for that).

[delorisdoe]

Boy Sangye has a good memory. I have been treated by mtx alone except for one medrol pack to determine whether I needed to go up in mtx (which I did). My disease activity is classified as moderate because while I wasn't extremely symptomatic, the WG did to real damage to my windpipe and my nose. I was definitely achy, extremely run down and had tons of problems with my ankle for about a year before dx, nosebleeds, stuffed up nose/ears, etc. but once I started taking mtx the numbers starting coming down really quickly...I probably felt better within 3 months and was in drug induced remission within 6 months. I have not had a problem reducing mtx to 5 mg, which is where I've been probably since the beginning of the fall or so, in anticipation of having surgery on my nose (required to be at 5 or less for that).

All I have to say is that if this is the mild form of wegeners than wegeners def sucks

[Sangye]

I love that quote from Jack! Hey, what do you guys think about starting a thread for Jack's quotes? Or maybe a thread for quotes from all the members we've lost. They have all changed our lives. Any thoughts on this?

[delorisdoe]

I thought the same thing. what should it be called

[Lightwarrior]

I thought the same thing. what should it be called

I agree, how about calling it Wisdom past?

[malin]

When I was diagnosed about 8 years ago now :ohmy: (doesn't feel that long ago!) I was on 80 mg pred and 20 mg MTX, it took me over a year in total to become "better" and I was tapering down the pred for YEARS.

Now tho, I am only on MTX (25mg) and doing ok. I get joint pains occasionally, especially when it's cold but that is really the only symptom I have these days.

[Sangye]

(Okay, I started the thread for Jack's quotes. I called it "What Jack Said" but if others want to change the name we can always copy it to a new thread--no worries. )

[maria garcia]

Has the thread lost alot of members? I love the quote idea.

[Al]

Has the thread lost alot of members? I love the quote idea.
Maria--these quotes are in a thread entitled "What Jack Said". I'll post something on it to bring is into the new posts list.

Al

[Kami]

Hello! I am just getting off of Pred. I have been on MTX since Feb or March of 2010, 20 mg now and I will be completely off the prednisone next week. I am hoping that I can stay off of it for awhile. Keep in mind that I was diagnosed a little over 2 years ago so this has been a long time coming.

[KathyB]

Woohoo on getting off prednisone! I so hope it's in my future!! I'm still in my first six months of WG and know I have to take it slow and be realistic, though!

[Psyborg]

Congrats on the Prednisone. I go to 5mg tomorrow.

[Sangye]

Congratulations, Kami! :thumbsup:

[vdub]

I don't think being on mtx alone is particularly unusual. What would be truly unusual is if any of us had the same treatment.

I was on mtx alone, but then I was on hydorcortisone at the same time because of the stupid pit issue. I'm not sure if that made a difference or not. I'm not sure if the hydrocortisone was a replacement of the other *sones.... In fact, I don't think I was ever on pred except for a one-time bout of psoriasas. I was on an alternative to prednisone that the brain surgeons seem to be particularly fond of for a while, but I don't recall the name of the substitute -- believe it started with a D, tho.

One thing that I have discovered is that I don't know a whole lot about this disease, or it's treatment, even though I have studied everything I can about it. The doctors know way more about it than I do, so I follow their advice.

[maria garcia]

We go to the doctor this week we will see how what they do about her meds. I spoke to her eye doctor and he said they will probably put her MTX higher and keep her of the prednisone. We will see what rheumy decides.

[Kami]

Thank you everyone for the good wishes!!
Good luck Garcia's!

[NicShaf]

If not for a little slip up in November, I would be starting MTX this week Pred free. Unfortunately, I had to bump back up to 5mg (from 3mg) and now I'm at 3mg again. But, my understanding was that it is OK to be switched to MTX or another maintenance drug without Pred as long as your symptoms are under control.
I agree with what others have said, I think 10mg to 5mg is too fast. I tapered differently, just a straight drop to the next rung, but I went from 10mg to 7.5mg to 5mg within about 6 weeks, and then I've been tapering 1mg per month since then.