I have finally been dx'd and will be starting injectable MTX next week. This site has already provided some great advice for me concerning drinking lots of water and taking a higher dose of Folic Acid, but I have a few other questions. Maybe some of you could tell me your experience with MTX.
Many of you have talked about being wiped out the day after taking MTX. Is it just fatigue or does it cause you to feel ill? How soon after the injection do you feel this way? How long does it last?
I was told to have someone with me for the first injection in case I have an adverse reaction. Has anyone had a bad reaction? And how soon after the injection did the reaction happen? I'm asking because I don't have anyone to be with me. I can go to my Mom's, but then have to drive home. Will I be able to drive after the injection. Am I just being overly nervous?
Hi again Marlene57, my first mtx injection was done by the nurse at my doctors surgery. Firstly to make sure I knew how to do it correctly and secondly to check that I was ok. I drove home shortly afterwards.
I think most docs will want to make sure you're 'trained' to self inject so I wonder whether you'll get a call to go in for the first dose.
For me, feeling wiped out was pretty extreme fatigue and nausea. I just laid about on the settee. To minimise my 'down time' I injected during the afternoon/early evening so I slept through a good bit of it and then just had one day to get through before I felt better. It sounds counter-intuitive but eating helps the nausea if you get it. But not everybody gets it at all .... especially if you get your hydration and folic acid right.
You're right to be cautious but try not to be nervous.
When I first started my MTX I was taking it orally. My first dose caused considerable fatigue - as in I pretty much slept for a week. However, keep in mind that I was also a grad student and had been in a considerable flare prior to this, had just had an allergic reaction to the first meds I tried (wasn't bad, but had hives in my mouth so went to the ER) so the fatigue was probably much worse due to all of that.
The fatigue lessened gradually over time, until the oral meds started making me sick with flu like symptoms all weekend after my dose. I'm now on injections and much much much prefer that - the side effects are actually less bothersome to me this way (and believe it or not it's cheaper!). I still get some minor fatigue some weeks (I usually just say, oh my meds are hitting me hard this week and take a nap), but it's not bad. It helps if you take it before bed time, but not too close to bed time - at least for me if I'm too sleepy I can't give myself a shot worth a damn (though sometimes I still end up giving myself a gnarly bruise regardless). And give yourself permission to take it easy and see how you react to it.
Did you do any training with your doc or his/her nurse on how to inject yourself? It can be a little unnerving at first if you're not used to it, but eventually you'll get pretty good at it and it'll be fairly painless most of the time. Sometimes I still hit a blood vessel and it stings and bruises up, but overall it's not bad.
Oh, and I do get a small reaction at the injection site - just a little bit of redness and the puncture spot raises up a bit, but that's usually gone within a few hours/by the next day.
Oh thank you Jules G and Subliminalflicker! Your info helps a lot.
The nurse did show me how to do the injections myself and I've had to give my husband cumadin injections, so I think I can handle that (if I don't close my eyes before the needle goes in, LOL).
Jules, I will try afternoon injections so I can sleep through most of the fatigue and hopefully start to recover the next day. Sounds like I will be able to go to Mom's for the first injection and then drive home.
Subliminalflicker, thanks for the tip about eating. I usually do want to eat when I'm nauseated. It's also helpful to know that the fatigue will lessen over time.
I had an easy ride with Mtx and it was a game changer for me. I took it orally for about 2 years .... maybe a bit more. I was suffering from extreme fatigue when I started on it and slowly but surely energy returned (that's how Mtx works - like a slow old carthorse). My knees and left arm were very stiff and at my worst I was down to one useable limb. Again, Mtx loosened me up little by little. It really seemed to do everything by increments. After about 6 months I started to get my life back.
What it didn't do was quell swelling. That was left to Humira which has also improved my mobility to near normal. I was hoping to continue Mtx alongside the biologic but liver enzymes started rising so the decision was made to stop. Shame! Other than the raised enzymes - and that was after some years - I had no side effects whatsoever ... maybe bit queasy in the first weeks, I can't remember. But that was as nothing compared to everything this drug did for me.
I took oral mtx at the highest dose (25 mg) without any side effects. Nothing. It didn’t seem to help much either. Eventually, it was switched to injectable, which the rheumatologist said sometimes works better. (So why didn’t she just start me on injectable? I’m impressed that yours did!) No SEs from that either. I didn’t think it was helping either, until I stopped it before surgery. Then I knew it had been doing some good. I am now on Enbrel, with mtx on the side.
Repeating: it works slowly! Don’t expect a speedy miracle.
Time to work is an incredibly valid point. We are so used to say, tylenol, ibuprofen or aspirin working within 30 - 45 minutes for a headache, that it's hard to culture your inner 'patient patient' (Seenie, I think you coined that phrase) when it comes to the DMARD's, like mtx, and also the biologics which can take months and months to really show their true worth. I've made the mistake of blowing a med off too soon (compounded by a doctor who should have advised me better!), so yes, be a patient patient ............. even though you actually want to scream, shout and pull your hair out with frustration at how slow progress seems.
Thank you, Sybil. Good to know that it works so slowly. I was expecting to wake up one day in the next few months and have no symptoms. I'll be more realistic about it now.
How does the Humira work for you? Do you still have your life back?
Sybil said:
I had an easy ride with Mtx and it was a game changer for me. I took it orally for about 2 years .... maybe a bit more. I was suffering from extreme fatigue when I started on it and slowly but surely energy returned (that's how Mtx works - like a slow old carthorse). My knees and left arm were very stiff and at my worst I was down to one useable limb. Again, Mtx loosened me up little by little. It really seemed to do everything by increments. After about 6 months I started to get my life back.
What it didn't do was quell swelling. That was left to Humira which has also improved my mobility to near normal. I was hoping to continue Mtx alongside the biologic but liver enzymes started rising so the decision was made to stop. Shame! Other than the raised enzymes - and that was after some years - I had no side effects whatsoever ... maybe bit queasy in the first weeks, I can't remember. But that was as nothing compared to everything this drug did for me.
Yeah, I've given up on the miracle, but will continue to be positive that it will help.
My rheumy started with the injectable because I also have UC. He said the oral can cause stomach and intestinal problems.
Thank you for sharing!
Seenie said:
I took oral mtx at the highest dose (25 mg) without any side effects. Nothing. It didn't seem to help much either. Eventually, it was switched to injectable, which the rheumatologist said sometimes works better. (So why didn't she just start me on injectable? I'm impressed that yours did!) No SEs from that either. I didn't think it was helping either, until I stopped it before surgery. Then I knew it had been doing some good. I am now on Enbrel, with mtx on the side. Repeating: it works slowly! Don't expect a speedy miracle.
Yes I do have my life back. It is a slightly different life, not because of any disability - I have dodgy joints but the drugs, starting with Mtx, did seem to protect them in time - but because the disease does rumble on and present some challenges. I am happy with the way things are though.
If Mtx works well for you, then the slowness will seem like its main drawback. However there comes a point when the balance tips .... a point at which you think "ah, so it has actually been working!" But it doesn't necessarily stop there. Even after 18 months or more I noticed small, pleasing changes that gradually added up. It's a very odd drug!
I suspect that Humira's working in a similar way, perhaps.
Marlene57 said:
Thank you, Sybil. Good to know that it works so slowly. I was expecting to wake up one day in the next few months and have no symptoms. I'll be more realistic about it now.
How does the Humira work for you? Do you still have your life back?
Sybil said:
I had an easy ride with Mtx and it was a game changer for me. I took it orally for about 2 years .... maybe a bit more. I was suffering from extreme fatigue when I started on it and slowly but surely energy returned (that's how Mtx works - like a slow old carthorse). My knees and left arm were very stiff and at my worst I was down to one useable limb. Again, Mtx loosened me up little by little. It really seemed to do everything by increments. After about 6 months I started to get my life back.
What it didn't do was quell swelling. That was left to Humira which has also improved my mobility to near normal. I was hoping to continue Mtx alongside the biologic but liver enzymes started rising so the decision was made to stop. Shame! Other than the raised enzymes - and that was after some years - I had no side effects whatsoever ... maybe bit queasy in the first weeks, I can't remember. But that was as nothing compared to everything this drug did for me.
I definitely won't be pulling my hair out...I'm losing enough already. Can't promise I won't scream and shout, though! ;)
It's strange how suddenly and quickly the symptoms of this disease come on and how help comes at such a snail's pace. Dx took almost 30 years. You'd think another several months would be nothing, but I really would like a life again, or at least know that I will be able to support myself and see my children and grandchildren. I've always been able to do what I had to do in tough situations, so I will make my mind up, now, to keep working.
It's great to be able to talk with people here. I feel that I'm getting info that the dr. just doesn't have time to give me. Thank you!
Jules G said:
Time to work is an incredibly valid point. We are so used to say, tylenol, ibuprofen or aspirin working within 30 - 45 minutes for a headache, that it's hard to culture your inner 'patient patient' (Seenie, I think you coined that phrase) when it comes to the DMARD's, like mtx, and also the biologics which can take months and months to really show their true worth. I've made the mistake of blowing a med off too soon (compounded by a doctor who should have advised me better!), so yes, be a patient patient ............. even though you actually want to scream, shout and pull your hair out with frustration at how slow progress seems.