help weaning methotrexate

[DianaW13]

Hi everyone,

I was wondering how people have weaned off of methotrexate ( currently on 15mg inj. weekly) and if there was much herxing with that. I have weaned myself off of prednisone – it’s been 2 1/2 weeks since my last dose and have upped my Mino dose to 100mg daily for about 10 days now. No noticeable herx so far. I also take 100mg bid celebrex and 200mg bid plaquenil. I know that the plaquenil is working as I tried to wean that down to 200mg daily a couple of months ago and started swelling up after 10 days.

I also would like to increase my daily dosage of Mino to 100mg bid (Dr. S’s suggestion).

Thanks so much!

Diana (RA)

[Parisa]

Diana,

Did you stop the prednisone 2 and a half weeks ago and also starrt increasing your mino? I would really wait a full month after being fully weaned before increasing the mino. I know it’s hard to go slow when you want to make progress but you don’t want to have a big flare.

Hopefully, someone with experience with methotrexate will respond to your questions regarding weaning from it.

[DianaW13]

Hi Parisa,

I did increase the Mino shortly after weaning from the prednisone. I was only taking 2.5 mg of pred every 3 days though, and the Mino dose I was taking at the time was 100mg MWF and 50mg Tues and Thurs. So far I haven’t noticed any extra swelling – maybe a slight increase in my feet, but my hands have gone way down and I feel better. I have been on Mino since beginning November 2011 (100mg MWF), so, 8 months in now.

It is difficult to go slow! I would LOVE to stop all the other meds today if I could! Thanks so much for your advice though. I will wait a while now before any new adjustments. I wondered how others managed the methotrexate though

[Marybeth]

Hi,
I am not sure my experiences with MTX are worth anything but…I went from pill form to self injections. But it did start making me sick to my stomach so my RA doctor discontinued it all together. I was not aware that one had to wean off MTX like prednisone. I also only stayed on MTX for about 4 months. I also did not start AP until early this year which is almost 3 years from my use of MTX.

[DianaW13]

Hi Marybeth,

Thank you for your reply. I know I should be patient in weaning my meds, but I just had my methotrexate shot today and I am noticing pain in tissues surrounding the various needle locations. I’m not sure how much longer I want to keep up with this. I wonder if it’s as hard to go off of it as the prednisone?

[PhilC]

Hi Diana,

Have you considered trying low-dose naltrexone (LDN)? If it works for you, it should help you get off the MTX and possibly the hydroxychloroquine as well. Also, are you taking milk thistle extract and N-acetyl cysteine (NAC)?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DianaW13]

Hi Phil,

Thank you so much for the info! I have never heard of LDN. I will read more on this tonight for sure! ( I had a quick look after reading your post though) Do you know if it is available in Canada? I do not take milk thistle or N-acetyl cysteine ( 🙄 have not heard of this either!)

What I DO take (on top of the above mentioned) is celebrex 100mg bid, hi-potency complex B formula, vit C, folic acid, fish oil (most likely not enough) and probiotics.

I am seriously considering getting off of the methotrexate sooner than later, even though I have only just gone off the prednisone and have also increased the Mino.

Diana

[PhilC]

Hi Diana,
@DianaW13 wrote:

Thank you so much for the info! I have never heard of LDN. I will read more on this tonight for sure! ( I had a quick look after reading your post though) Do you know if it is available in Canada?

Yes, I believe it is available in Canada. The best web site for information on LDN is http://www.ldnscience.org. Many web sites about LDN have some incorrect/outdated information, but that web site is supposed to be a good one. Also, I should point out that LDN makes some people worse (much worse in some cases), so caution is advised.

@DianaW13 wrote:

I do not take milk thistle or N-acetyl cysteine ( 🙄 have not heard of this either!)

By the way, the reason I asked is because you are taking a lot of different medications, and I was wondering if you are taking anything to help protect your liver.

@DianaW13 wrote:

I am seriously considering getting off of the methotrexate sooner than later, even though I have only just gone off the prednisone and have also increased the Mino.

Suddenly stopping the methotrexate would probably not be a good idea since it may be helping to keep your inflammation under control. Perhaps you could start out by reducing the dose to 12.5 mg.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DianaW13]

Hi Phil,

Thanks so much for sharing your info. I am looking into it. As far as the methotrexate is concerned, I was thinking of lowering to 12.5mg or 10mg for a few weeks, and then maybe one more decrease before finally going off altogether. I spoke with Dr S a while back and he suggested upping Mino to 200mg everyday. It’s so hard to know how to manage increases/decreases. My last adjustment with the prednisone and Mino didn’t seem to bother me. In fact, I do not miss the prednisone at all, and I feel much better being on daily dosing of the Mino (lol, I’m even beginning to see my knees again).

Diana

[dianne-sunshinecoast]

hi dianna, regarding reducing methotrexate- i do remember a rheumatologist saying that to reduce methotrexate tablets – not sure about injections- it was best to reduce by 2.5 mgms @ a time. hope that helps . kind regards ..di. p.s. every 2 wks. sorry forgot to add that.

[DianaW13]

Thanks Dianne,

Your post is timely as today (Tues) is my methotrexate day. I will do 12.5 today. And thanks for the 2 week info, as that is what I was thinking just this morning (your post confirmed my thinking!)

Diana

[Kathy1465]

Hi-

Just some advice from my own experience. We are all different, but please lower the dose slowly! I messed with my Mtx not so long ago because I was feeling so good. It took about FIVE weeks after lowering the Mtx, but then I was in a horrific flare, which took a while to resolve and really set me back. Dr. S recommended lowering one pill and then waiting at least a month before lowering it again. Any faster, and he warned me I could go into a flare. That is just what happened and I wish I would have listened to him. I am better now, but I will never do anything but SLOW AND STEADY where Mtx or prednisone is concerned again!

Wishing you much success!

Kathy

[DianaW13]

Hi Kathy,

Thanks for sharing. Dr S. wants me upping the Mino dose to 200mg everyday so I am going to go slow with the methotrexate as I steadily dial up on the Mino. I’ve been on 15 mg of methotrexate weekly for months now, so I will stay on 12.5 for at least a month before adjusting again. I don’t want to change too much at one time.

How long were you on methotrexate, and at what dosage did you just stop?

Diana

[sher]

i have been on iv rituxan and had anaphalatic reaction, so can not take it anymore. i am still on prednisone 5 mg day and want to start on AB treatment. Has anyone on prednisone prior to starting AB therapy? would you wean off pred. before starting AB treatment. I am new to AB treatment any advice??

[lynnie_sydney]

Welcome to the Road Back Discussion Forum Cher.

If you use the search box at the top of the front page to General Discussion, where the topics are listed, and type ‘weaning pred’ in, alot of past discussion on this subject will come up for you to look through. The posts contain some really useful information so well worth taking some time to look through.

Many people start AP treatment whilst still on prednisone and it is worth taking your time to wean off it, especially as you may experience some initial apparent worsening (Jarisch-Herxheimer response) due to cell die-off. The last 5mg is genreally thought to be the hardest to wean from, as the adrenals need to start working on their own again, so it’s generally worth taking this very, very slowly.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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