Methotrexate vs Quality of Life

[Sunburst001]

Hi

A wee while ago I asked for feedback on whether to continue with MTX.

healthunlocked.com/pmrgcauk...

Many thanks for the wisdom.

After only 6 weeks on MTX (4 was @ 20mg) my ALT was already showing a clear upward trend and was above the NZ normal range. I was brought down by stomach pains, bloating, cramps and diarrhoea. Hair loss had noticeably increased.

My rheumatologist asked me to pause the MTX until my liver was back on track - then resume at a lower dose.

I’m going to let that pause extend with no resumption in mind. Given the very bumpy tapering during my first 4 months on Prednisone, I’d like to give my body a chance to see how things go on a much slower, better informed and planned taper. Currently one week on 30mg. Will stay there until the MTX reaction is out of my system and then take stock. Thinking drop by 2.5 mg then - for as long as needed at each step before taking the next drop. Does that sound reasonable?

🌻

[DorsetLady PMRGCAuk volunteer]

Sounds reasonable - but at the risk of sounding like a broken record, you won’t know until you try!

[Sunburst001 in reply to DorsetLady]

So very sensible. ✅✅✅

[TandemTime]

Personally I think my 2.5mg drop ( only started on 15mg ) was too much between 12.5mg and 10mg. Could it be a thing to go smaller drops more frequently when you get below 15mg? Wishing you lots of luck. Might collagen give your hair a boost? My daughter at 4 years old lost a huge amount of hair it was very scary. She was referred to a specialist. They explained hair has 3 stages, growth, resting and falling out. She had had flu 3 months before ( shock to the body) and he explained she had skipped the growth stage. I can't remember but I think each stage was 3 months, it did get worse then better after say 4 months. I hope this happens for you.

[Sunburst001 in reply to TandemTime]

Thank you. I have increased my folic acid to 5mg daily on advice of rheumatologist. Will look into the idea of collagen as well. Your info about the three stages is very helpful.

I was thinking 2.5mg drops down to 15mg then a time to stop and think. But very open to seeing how it goes at each step down from 30g. The rule of thumb is usually <10% for each drop - so getting beyond that when reaching 22.5mg. Nothing will surprise here in the Prednizone. 😊

[Obscureclouds in reply to Sunburst001]

In line with comment from TandemTime I tapered more slowly from 15mg. I went down to 14mgs for a week, 13mg for 2 weeks then to 12mg for 3 weeks then dropped by 0.5mg for about 5 days to reach 10mg. I felt more tired on 10.5mg so stayed on that a few days longer. My consultants plan now says to stay on 10 mg for two months so I intend to do so, even if I feel fighting fit, as advice on this forum was it’s sometimes best to have a period of consolidation. At least with a smaller drop you feel more in control if you start feeling it not working as it should. We’re all different but I’m sure you will find what works best for you.

[Sunburst001 in reply to Obscureclouds]

Thank you. I find it reassuring that other people have been cautious. Definitely time for a stop and think when I get to 15mg. 🌻

[Obscureclouds]

To be honest it was my intention to decrease by I mg per week to be down to 10mg at the beginning of March. I had been on 15mg for over 3 weeks when I had my second visit to my Consultant at the end of Jan and he was strongly pushing me to take MTX giving me the impression that I should reduce Pred as soon as possible. By the time I received his follow up letter I had already advised him I wasn’t going to take MTX so at the end of the letter he added a new tapering plan saying I should stay on 15mg for Feb, go to 12.5 in March, 10 in April then by 1 mg every two months. But by this time I was already down to 13 and feeling good and wondered why he was now suggesting such a slow taper in contrast to his previous one ( given the tone and content of a second letter from him I even considered he may be making a point because of my decision on MTX) . As always DL and Pro offered words of wisdom ( and others shared their experiences) which gave me a much better understanding of the management of GCA/LVV and of tapering Pred hence I modified my tapering regime to fall in line with his new plan of hitting 10mg in April instead of March. I now felt a lot more relaxed and happy about taking it more slowly and so far so good. For me I’m sure slow tapering without MTX is the right decision. Having done the research and considered the experience of others, I think it’s best to follow our instincts so good luck with what ever you decide.

[Sunburst001 in reply to Obscureclouds]

Thank you for sharing that story. I have decided to stay off the MTX until some unspecified future date. I had pretty much decided that before my session with the Rheumatologist last week. She gave me a “get out of jail free” card by asking me to pause the MTX until my ALT level had returned into the more normal zone. I was very happy - I no longer needed to present my case for stopping after only 6 weeks. We left it a bit usefully vague about if/when I would resume MTX. I’m tempted to say “over my dead body” but that might be tempting fate. 😉

[Elvied]

I felt awful on MTX ,lost so much hair ,my skin awful.

My lips were super dry and peeling. I had to take a super strong folic acid.

I ended up with diverticulitis from the combination of prednisone and MTX. I would never take it again.

[Doublef]

That is exactly what I did, I am now also on Lefluminate but not convinced that it is doing anything.

[Zappata]

I sometimes think the rheumys need to look as if they're doing something so they try one thing then another

[tangocharlie]

I tried MTX a few times but it was so dreadful for me, the effects on stomach and guts the worst, I said I just couldn't take it anymore after a few months. As we had run out of DMARDS (I'd tried Leflunamide, Aziathaprine, Sulfasalazine) we then tried Hydroxychloraquine (HCQ) and this has worked great for me, I've managed to get down from about 25 Pred where I had been stuck for a long time to 9, even if it has taken 2 years. Might be worth a try?

[Bignorhill]

I was put on MTX, did not have any side effects but was dismayed but the fact that I was told the doctor would check my bloods each month before letting me carry on with MTX each month, when I looked at what they were looking at it did not include the liver tests that were required. So knowing there was no proper monitoring going on I stopped taking the MTX. The Rheumatologist then just told I must be alright now as I am not taking the medication and signed me off. Fortunately, I do not seem to be having a problem with PMR or Vasculitis that I was supposedly taking the MTX for.

[Alliekat65]

Hi

I too am on methotrexate and had terrible bloating and diahorrea but I now inject.myself once a week and this my body prefers

Good luck

[CowgirlJo]

I didn't like MTX partly due to hair loss but when I stopped taking it my hair stopped falling out & gradually returned to normal, altho I have to say it was always very thick so the loss wasn't noticeable to others. I also found the MTX didn't help me reduce the pred, but I was at a much lower level than you. I have since tapered successfully following the DSNS method. I'm not down to zero but happy with progress.

[Golden20]

I’m sorry to hear of your reaction to MTX. I really feel for you. I was started on it last May and have struggled with stomach issues. I stuck at it until February just gone but I was having such awful stomach pains, I ended up in hospital. It was making my life so miserable. Since stopping my stomach pains have gone. My Rheumatologist wasn’t happy about my decision and offered MTX injections but I’d had enough of that drug. The cure in my case, was worse than the PMR. She is so desperate to get me off of prednisone, which I get but I’m on such a low dose now. I want to see if I can manage, whilst tapering very slowly. I wish you well. Stay strong.