Have just swallowed 3rd lot of MTX. Since starting i have been feeling worse in myself. Endless fatigue, more pain and generally feeling like death warmed up. That is all the time without any respite
I expected nausea but not this. Is this normal at the beginning?
I would be ever so greatful for any input, thank you.
Hi Ursi
I'm not sure. Basically 3 months ago when I saw the consultant I told her I felt I concerned with increased fatigue foot and ankle pain and asked if there was any options. She gave me a steroid injection and a 2 week nurse appointment with view to starting methotrexate if the injection helped. It did and I started methotrexate. Since then though I haven't really felt any more improvement in my energy especially now the injection has worn off, in fact I feel more exhausted and my mood is getting low. The aches and pains vary but they haven't gone. I just took the dogs for a walk, possibly 1 mile. I began, feeling like I was dragging a stiff body, it loosened up half way but ended with sore arches, balls and ankles of both feet, not to mention the knees and the right hip. the achy muscles. Oh life is great lol. But at least I COULD do it unlike a lot with LUPUS x I think it takes a long time to get in to your system and they need to get you to the right dose which your body can tolerate. The nurse gave me the impression the dose I was to eventually be on was not that high and could be increased if need be. Its early days for you and me x
Most drugs take at least 3 months to act. Have they mentioned azathioprine? This may be a better match for you.
I have also just gone on methotrexate and don't see any difference, in fact I feel a tad worse with pain and swelling in my ankles and sudden onsets of tiredness where one minute I'll be ok and the next if I dont sit down and rest I feel my body would collapse. Maybe I need to up the dose and I will find this out when I see the rhumy nurse in two weeks. Luckily I haven't had other side effects, that I know are linked anyway, like sickness.
Just like you ursi and feeling completely exhausted and like dearh warmed up. Note at the beginning I said a tad worse, hahahaha, thats because we have so many problems anyway what's a few more added to the pot. Xx
I was on methotrexate and felt like that, absolutely wiped me out! Felt awful! Did help my joints a lot but added to the fatigue.
Changed to mycophenolate and had no side effects.
Can take you time to get used to the medicine.
Jo
Me too....on methorexate for a year as don;t like to give up. Like Joanne above I felt wiped out for at least two days after taking it and then my memory was affected. Changed to leflunomide and tolerating this though I am on my second flare up in 4 months and second lot of steroid injections too. It does seem as though we are all started on the cheaper dmards before the biologics!
"death warmed up"--strange but that phrase has been on my mind for a few days now. I'm sorry; and I know what you mean I'm afraid.
Hope this gives you some kind of help:
Started MTX about 16/17 weeks ago.
In the beginning I would get a burst of energy, and then feel better for about 4 days after taking it. I was almost forgetting to take my pred. and plaqunil in the mornings. Was walking 3x a day, the pain decreased. MTX INCREASES SUN SENSITIVITY, and I got burned on one of my walks which set me into a flare and then I had to go on a prednisone taper. (Having a terrible time with sun). Also I've had upper and lower GI distress--for some reason it constipates me.
Anyway, last week I took it (Sat.) and for the first time experienced that dreadful fatigue so many people have suffered.
I don't know: it's unpredictable.
Be sure to take FOLIC ACID supplement (I forgot sometimes, which probably has contributed to my woes). It has helped a lot with the joint pain, tho it's not turning out to be the life changer I had hoped. But who knows?
From what I've read, heard here, and from the doctors: it takes some time, like at least 12 weeks, to see improvement.
I really hope you start having some benefits soon. If you feel up to it, let me know how it goes for you this week... Take good care! pen xxx
I gave methotrexate a trial of about two months before I finally said "nope"; I couldn't function on it -I was timing my doses for when my son was in school because it made me into a zombie for two days before my brain would clear enough for me to be sable to talk, let alone think! I would actually see how you feel after a few weeks -it may take a while for a medicine to kick in, but in my view shouldn't make anyone feel worse while waiting it out. I was put on something else instead, which was loads better. I think sometimes we are so used to suffering stoically we just assume it's a requirement.
Thanks to everyone who replied. Good advice aplenty and food for thought. I have also spoken to a specialist nurse at my local hospital.
Have now decided to give this a fair try.
Hope you are all having a decent weekend xx
Iv been on the mtx for nearly 12 weeks now but for actually taking them iv only done 6! Recurrent infections, increased pain and my insomnia is back despite desperate fatigue! At first i felt amazing, it kicked in quick and i wore make up for the first time since i got married beginning of December! Now i cant wait to get the hell off it and change to something else, ill try anything but i think iv give it a good enough go after landing in hospital for the first time in 3 years. Please don't let this scare you, i know that's easier than it sounds, I'm just being honest. I would give it a go, if it doesn't work for you either demand something else. Your very closely monitored so there are many opportunities to say you've had enough. I hope you have a good experience love xxx
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