MTX stopped

[Nagswoman]

Anyone else decided that they have had enough of being nauseous for 4-5 days after each MTX? Then, of course, there were the endless infections to cope with too. I stopped taking it 2.5 months ago, during another infection, after being on 20mg weekly for 3.5 years, without discussion, and feel very much better. My 4th attempt at steroid reduction below 4mg, is actually going quite well. I don't seem to be having any symptoms but, I expect, all will be revealed when my 8-weekly blood tests happen at the end of the month. Should I be having any symptoms?

[PMRpro Ambassador]

The one thing it didn't do to me was make me feel nauseated - that would have been the end pdq! But the rest was bad enough.

[SnazzyD]

It’s a personal decision isn’t it? I’ve turned down meds in the past that I felt have had too much of a detrimental effect to be worth it and frankly I’ve decided what is life worth if I’m suffering all the time with no guarantees? We’re all different though as is every situation. With that I’ve also accepted that if my decision was wrong I’d have to accept that too; you win some you lose some and you have to decide if you do ‘lose’ that you’re ok with it.

There’s isn’t a one size for all for should or shouldn’t you be getting symptoms at 4mg. If your PMR is quiet it’ll be fine but if it isn’t, signs will show. If your markers are up, it could be for other reasons like a grumbling infection or a viral infection and not PMR. So, symptoms are important when weighing up the evidence. People on this forum have said their markers are up but they feel fine. I would caution against reducing too quickly now. I do wonder what stress the body goes through when reduction outpaces the body’s adrenal function and perhaps this can cause a flare, I don’t know. Low adrenal function can make one feel pretty rough so bear it in mind. Good luck.

[Odosmum]

I gave up on methotrexate because I didn't have enough good days in the week. It made me miserable.

[SheffieldJane]

Good luck with your decision. Quality of life matters!

[Hidden]

Hi Nagswoman

To obtain the full effects of MTX it takes approx 12weeks & similarly when you first stop MTX you don’t notice it at first, that is how it has been in my experience but l’d have thought by now you would be noticing if it was going to be an issue.

It’ll be interesting to see what your blood results show.

Best Wishes

MrsN 🌸

[Hidden]

I was on methotrexate for months. It made me feel sick and hypoglycemic which is when I put on the majority of my weight gain. I felt so good after going off of it. I have actually put it down as allergic to. I thought I was dying so what does it matter if I eat the whole cake...ooops... not one of my better decisions.

[Blackcatlover]

Hated methotrexate. I lasted for six months and was sick three days out of every week. It never helped me reduce my prednisone. My numbers would go up if I went below 15mg of prednisone.

[Constance13 in reply to Blackcatlover]

Six months? Wow! I lasted three days on mtx and gave it up.

[Marijo1951]

I've been taking MTX for just over 2 years without obvious problems. Except that I now know that I shouldn't have taken it while I was on antibiotics - nobody warned me and I'm sure the flesh wound in my leg would have healed up much faster and without the complication of cellulitis if I hadn't taken the MTX . I did stop taking it when I had a couple of heavy colds, one after the other starting in the New Year. I spoke to the rheumatology nurse at the hospital about possibly stopping it, and came to an agreement to cut the dose from 15 mg to 10 mg per week. My next hospital appointment is in July and I hope to discuss dropping it altogether then.

[Nagswoman in reply to Marijo1951]

I don't get why I was on 20mg. Most people seem to be on 10mg to 15mg. I knew about antibiotics but I was told at the end of December to take the MTX even if I was on antibiotics but I had stopped it due to infections. When I was told that, that was when I completely stopped. That was bad information. Don't antibiotics and MTX together do liver damage or something?

[Marijo1951 in reply to Nagswoman]

Not sure about that but, as I understand it, the MTX interferes with the antibiotics so they can't do their work properly (excuse the non-medical terminology!)

[PMRpro Ambassador in reply to Marijo1951]

Antibiotics may increase the level of mtx in the blood - so make side effects worse. The mtx may prevent the immune system fighting the infection for which you need the abx. And certain abx don't mix with mtx but they are very specific.

[Marijo1951 in reply to PMRpro]

Thank you for explaining it properly. After I gashed my leg open in August, it took just over 4 months to heal, after a couple of episodes of cellulitis for which I was taking the antibiotics.

[PMRpro Ambassador in reply to Marijo1951]

That often happens with cellulitis - horrible.

[Marijo1951]

Also I meant to say that I haven't heard of anybody else being on 20 mg of MTX as a steroid saver. People I've heard of are on either 10 or 15 mg. I started on 10 mg and went up to 15 after a couple of months and now, as I explained, I've gone back to 10 mg.

[Devoid in reply to Marijo1951]

Hi I’m on 20mg of mtx and have been on 25mg , this was prescribed when I couldn’t get on with the steroids as a way to try and reduce the steroids, I’m now on tocilizumab and methotrexate and steroids down to 7.5 mg . Never been sure that the methotrexate helps but the consultant gave me a good enough reason to continue. Only had nausea on one occasion, but hair loss and fatigue have been an issue but not sure what is side effects and what’s the illness

[ignatz in reply to Marijo1951]

Hi.. I'm now injecting 22.5mg MTX (Methotrexate) every week since end of 2019 as pills did not seem to have any useful effect. Started on 20mg in early 2019 and raised to 22.5mg in Autumn 2019.

No obvious side effects

....but still struggling to reduce from 10mg Prednisolone after flaring on slow taper to 4.5mg in January 2020. Aches and 'fog' back at 9mg....sigh. Current blood include... C-reactive protein Your Value

6.2 mg/L

(Standard Range

0 - 5.0 mg/L)- hardly raised at all!!!

Back in 2017 my C-reactive protein was 81.8 when first diagnosed.