methaxatrate side effects
Posted , 6 users are following.
Hi all
I am feeling really disappointed right now. I have had supposedly PMR
since March 2016. Ihave come down to 7mg last 3 months cant seem to get below 7mg, and on methaxatrate for 6 months 25 mg.
My esr and cpk are still high have not come down. Now I have been diagnosed with fibrosis of the liver.
My question is this a result of the horrible methaxatrate? This drug has done nothing to improve my condition. Why has my rheummy insisted that I go on this drug. He now wants to take me off and wants to start bio treament which invloves some injection once a week.
I now have to see a liver specialist as concerned. Can this be reversed?
I don't know what to do anymore. He still does not believe its PMR but cant really diagnose anything else after extensive tests upon tests.
I feel like coming off everythjng and see what happens. ..
would love some feedback
0 likes, 28 replies
FlipDover_Aust mirella60121
Posted
Hi Mirella, I have a similar story.
Did the predisone help with the PMR symptoms in the first instance and that's how you think you have PMR?
My CRP didn't budge until I started on Tocilizumab (the biological drug).
I presume you were also taking folic acid for a few days following your weekly 25mg MTX dose? It helps avoid the liver damage. It is my understanding the the liver will recover over time from the damage caused by the MTX.
mirella60121 FlipDover_Aust
Posted
FlipDover_Aust mirella60121
Posted
Hi from Canberra!
Almost certain that at least some of the liver damage will be from the MTX. I have some as well, which 'we' are keeping an eye on. My rhuemy isn't overly concerned as yet. If you have had relief from pred, then it's mostly likely PMR. 7mg isn't so bad, can you talk him into leaving you at that dose for a while? How old are you?
I'm on Actemra, still on 5mg pred and 20mg MTX (15mg Folic acid x 3 days after weekly dose of MTX)
mirella60121 FlipDover_Aust
Posted
I am late 40s. I have been on 7mg about 5 months now. Tried to reduce but got stiffness back. I am definately coming off methotrexate . My gp doesn't agree with the bio drug as says long term effects are not good. Something to do with cancer cells stoppers..not really sure. Is the Acterma injections or pill form. And how do you feel now any stiffness?
FlipDover_Aust mirella60121
Posted
There are currently two ways of having Actemra, one is a monthly infusion and the other is a weekly injection. I give myself the weekly injection.
Late 40s is definitely not too young for PMR - I was only just 51, so you can't say that a few years makes a difference either way.
My view on the Bio is that if it works, then try. It's allowed me to reduce to 5mg from 15mg in three months. What's worse, the side effects from pred, or from the bio? Only you can decide that!
I noticed a significant improvement in pain/stiffness and fatigue after starting Actemra - the brain fog and fatigue almost completely disappeared. But remember, my pred dose went down at the same time, so who knows which was actually the cause of the improvement?
amkoffee FlipDover_Aust
Posted
I can't believe you were allowed 15 mg of folic acid. My rheumy would only allow me 3 mg to combat the symptoms of MTX.
EileenH amkoffee
Posted
FlipDover_Aust amkoffee
Posted
"Allowed" isn't the right word - the rhuemy INSISTED! lol
I believe it's a fairly normal dose post MTX. Even with that dose my liver is still very unhappy.
EileenH FlipDover_Aust
Posted
Not sure that folic acid helps the liver aspects does it - it is primarily for the mouth ulcers.
I was also going to say it is a normal sort of dose along with mtx, I've come across higher doses.
FlipDover_Aust EileenH
Posted
Just FYI, Here's the speil on Folate deficiency, which is the side effect of MXT:
Some symptoms caused by folate deficiency include:
anemia (decreased number of red blood cells)
nausea
vomiting
stomach pain
diarrhea
liver problems
stomatitis (mouth sores)
My rhuemy has only ever been concerned about the liver - and has still said I can have a couple of drinks occassionally. (he didn't specify what size though!) lol
EileenH FlipDover_Aust
Posted
My friend in Scotland is on mtx and her doctor says she may have the odd drink too. Others insist on total temperance. Seems to vary a lot.
dan38655 mirella60121
Posted
It doesn't seem like you are doing badly in terms of your pred dosage reduction.
I'm only 138lbs so started at 15mg, THREE YEARS AGO.
I followed rheumi's orders and "forced" monthly 1mg reduction, but started having severe problems (feet, thumbs, fatigue, poor sleep) as I got below10mg.
After many months of suffering, I halted my reduction at 5mg, and then had to stay there for a year. I then made seasonal reductions down to 2.5mg/day, the first try I ended up backat 5mg for a few months, but finally this year I have held solid at 2mg and alternating with 1.75mg every other day.
I consider my progress approximately typical for pmr.
I never took the prescribed Plaquenil my rheumi recommended from the start. He said I should take either Sulfasalazine or Plaquenil with my prednisone, but I never did.
I take as little pred as allows me to be 80% free of pmr symptoms, and I do much better when I stay active, outdoors, morning and evening. I try to stay moving, sitting for long periods brings on a return of symptoms.
mirella60121 dan38655
Posted
FlipDover_Aust mirella60121
Posted
You can't look back and think "what if"..... You do what you can at the time to make your life more bearable. And PMR is horrible to live with day in and day out. It drags you down, you do anything to make yourself feel better.
mirella60121 FlipDover_Aust
Posted
FlipDover_Aust mirella60121
Posted
My Dr's name is Suran Jayaweera. Consults out of ACT Rhuematology. He's just moved here from Sydney - I had to have my initial consultation with him in Sydney - it was worth the 6 hour return trip! I really like him and he's very competant. I was so very sick when I first saw him and just over a year later I feel aout 90% most of the time. First thing he did was put me on MTX, then on Actemra. I went from 20mg pred to (currently) 5mg.
mirella60121 FlipDover_Aust
Posted
EileenH mirella60121
Posted
Every drug has risks - Actemra is used in RA and (now) in GCA and in both cases, the benefits outweigh the potential risks. Whether they will come to the same conclusions for PMR is another matter, that hasn't come into the arena yet.
Whether Flip or anyone else had side-effects with mtx doesn't have any bearing for you - you have to try it to find out. I have a friend who takes it and has absolutely no problems at all - she even has the occasional drink with the blessing of her rheumy. There are others who use it without problems - the bottom line is that you have to try: if it helps and you have no side effects that is great. But nothing ventured, nothing gained. The only thing I would say - I don't know about Flip - is that if you are good at a low dose of pred (under about 8mg) I wouldn't agree to add in mtx without VERY good reasons.
FlipDover_Aust mirella60121
Posted
Yes, I was advised - and I did my own (Dr Google) research.
I've had no side effects from the Actemra that I am aware of.... MXT has affected my liver, but it's not bad enough to stop taking it.
ESR was always 'normal', and CRP went down for the first time in 2 years after 6 weeks on Actemra. I've had a break from Actemra while the Govt sorts out my prescription and my CRP has gone straight back up to where it was prior to starting Actemra. And I feel like crap again!
So in a nutshell, Actemra is fabulous!
mirella60121 FlipDover_Aust
Posted
FlipDover_Aust mirella60121
Posted
please do, I'm interested to hear what your dr has to say compared to what mine tells me!