Methotrexate

[MeShell]

I have heard great things about methotrexate helping with this disease, so I was considering talking to my doctor about being put on it. But the research I've done has brought back soooo many results of it causing debilitating fatigue (at least for the first couple days after the dose). This is one of my worst symptoms already and I don't think I want to take the chance of making it worse.

Do you, who are on methotrexate, experience fatigue? Any other side effects with methotrexate?

I think I may want to opt for a different treatment.

[Sleepy In Seattle]

It has worked very well for me, and with relatively few side effects.

Here's what I know about it - hopefully this will help.
- People have very different reactions to it - some have no problems with it, some react horribly to it.
- Almost everybody has some side effects right at first, but as your body gets used to it those mostly go away.
- Taking 1g of Folic Acid every day (except the day you take your Mtx) REALLY reduces side-effects.
- Usually your doc will start you on a low dose and work up over several weeks/months.
- Dosages vary quite a bit - usually they try to get you on the lowest dose that works.
- People whose stomachs can't handle the oral form of the drug can do injections at home.
- Many people use it for many years with no problems. Sometimes problems develop after years of use, and you have to switch medications then, but that's usually way down the road.
- It is a drug that has been around a looooong time and is well-studied.
- It reacts badly with A LOT of other medications, so you have to be pretty careful about taking stuff. Check EVERYTHING with your Rheumatologist. 
- It's hard on your liver, so you have to get fairly frequent blood tests to monitor your liver function (mine are quarterly). It's also a good idea to drink a lot of water every day to help your liver flush toxins out.
- It's best not to drink alcohol while on Mtx. Some people do, but it should be very limited.
- Most people find it's best to take it after dinner so you end up sleeping through any side effects (fatigue, etc).
- It is an immunosuppressant, with all the complications that go along with that - you are more susceptible to infections, viruses, etc...so be careful about washing hands, etc....especially in the day or so right after your weekly dose. (That being said, I have been healthier since being ON it than I even was before...!)
- It's important that you only get killed-virus vaccines while you are on it (not the weakened ones).

My own experience: I started with 7.5mg once a week, and slowly worked my way up to 25mg/week. By the time I got to full dose, I was feeling pretty crummy the next day, so my doc suggested I break the dose up and take half one night, and half another - so now I take 12.5mg on Mondays, and 12.5 on Thursdays, after dinner. I sleep through any ickiness and feel great the next morning! 

Side effects - it never did bother my stomach - but I have a cast-iron gut. I am careful to always take it on a full stomach. It does kinda give you a weird taste in your mouth about 15 minutes after you take it...I eat a peppermint patty and that seems to clear it up. 

The main problem I have with it is vanity-related - it has made my hair much thinner, and very brittle  I am experimenting with different supplements (biotin, etc) and special shampoos and conditioners to see what can be done. My family says they don't notice it, but I think they're just being nice  Usually any hair loss kind of levels off after about 6 months. I'd say I probably lost about 1/3 of my hair. It was thick to begin with, but it's not now.

Vanity aside, I'd say that overall, it has made me feel a LOT better - my energy levels are almost normal now (I used to have debilitating fatigue, even on Plaquenil) and I have very few aches and pains. Really, I have been amazed how taking "poison" twice a week has made me feel SOOOOOOOO much better. I think it's just what my weird-o body needed. 

I had to go off it for a couple weeks recently because I had to take antibiotics for a UTI (you have to go off the Mtx for many other medications or if you have surgery), and interestingly enough, I GOT SICK right afterwards (the usual winter virus crap). Weird, because I had nursed my family through several rounds of viruses while on the Mtx, and I was SURE I would get really sick (I ALWAYS used to get EVERYTHING that was going around) - but I stayed healthy. Then I go off the immunosuppressant, and I get sick!  I don't understand it - but it just reinforces to me that the Mtx - for whatever weird reason - makes MY body work better and stay healthier.

Just one person's experience - but there it is. I hope that helps! Best of luck to you, whatever you decide....

[lori]

many many years beffore I got any autoimmune dx i complained of fatigue....

then when i got the sjs dx the rhuemy put me on plaquenil... soon after i had some issues that made me question the med and i stopped...
but when i suddenly had a huge flare and bloodwork revealed i had full blown RA, the rhumey insited i begin agressive treat-

i have NO stomache issues with the mtx even tho i have a very senstivie tummy.
i take it at night, with dinner- i always make sure i have a high carb meal cause i heard that helps.

at first the next day was my " down day" felt a bit wiped out the next am till about noon but now i dont even notice its my " down day"

i take 3 mg folic as well as a b complex

i also had to add humira due to the ra but thanks to the meds, im in ra remission and my sjs syptoms seems alot less than many here who are not on mtx

if you cant tolerate the oral mtx there are injections...its not hard to do at all.

my advice, give it a try- you will never know how YOU will react as we each are diffferent

god bless

lori

[Styx]

Do you, who are on methotrexate, experience fatigue? Any other side effects with methotrexate?

Most of the gastrointestinal side effects (amongst others) can be avoided with subcutaneous administration i.e. injection. You'll also have better, more predictable absorption of the drug. As lori said, it's pretty easy.

- Taking 1g of Folic Acid every day (except the day you take your Mtx) REALLY reduces side-effects.

1mg right? And yes that should help with side effects too.

FWIW, I did not experience fatigue on MTX. Many times fatigue is listed as a side effect for cytotoxic drugs in case it causes bone marrow suppression (which is a severe complication and uncommon). So I believe typically, you shouldn't experience fatigue unless something very bad is happening. That was my experience as I've never had any fatigue on cytotoxic drugs, and I've used them for years (AZA and MTX, respectively).

Styx

[Sleepy In Seattle]

OOPS! sorry - yes, 1mg....(typo!)

[MeShell]

Thank you ALL for your responses! You have been very helpful.

Sleepy in Seattle, I'm so sorry about your loss of hair, I don't know what I would do if that were to happen to me. But I am glad that you are feeling better than you were. That's good to hear. I will definitely use your tips if I decide to try the methotrexate. I think I might decide to try it just to see. When I first posted this topic I was pretty sure I wouldn't even try it but I feel better knowing that you had fatigue before and it didn't make it worse. I know that it could be different for me, but what's the sense in not trying something if it could seriously help me feel better?

Lori, thank you for your advice. I think I may try it if he gives me the opportunity =).

and Styx, I actually looked the med up on askapatient.com and many many reviews on that site show people who experience fatigue as a side effect to methotrexate.
http://www.askapatient.com/viewrating.asp?drug=40263&name=METHOTREXATE

I don't know what was causing it for them, but this is what brought me concern. I tend to believe patient responses over things listed on drug literature anyway!

[eyeamdry]

I have been on MTX for six years without any problems.  I recently stopped for 7 weeks by my own accord.  I was having problems breathing and I read MTX could do that.  Well, I can't breathe any better--and have a lot of lower back/hip pain and I've just started it back up.  I will probably feel better after a few weeks go by.  Lucy

PS, My rheumy also has had me stop it for a couple of weeks when I've had surgeries.

[MeShell]

I hope you feel better soon, Lucy! Thanks for the input!

[stick gal]

Just started mtx today. So far nothing drastic. Yea!! Lots of fatigue but that's why I started it so nothing new there. Dr started me on 10 mg. didn't think about taking in the evening but gonna try that. Those with side effects, did they happen day one or come on gradually? Thamks

[Sleepy In Seattle]

For me the hair loss came on very gradually - the other stuff (fatigue, ickiness, etc) was worst the first few doses and then my body seemed to adjust. Now when I take it, I just get kind of pleasantly sleepy and heavy in my limbs. So I got to bed and sleep! 
(Actually, I tend to sleep better on Mtx nights than the other ones...it's kind of nice!)

[MeShell]

Lol well that actually sounds kind of pleasant! I guess I'll take it at night!!!

[Styx]

and Styx, I actually looked the med up on askapatient.com and many many reviews on that site show people who experience fatigue as a side effect to methotrexate.
http://www.askapatient.com/viewrating.asp?drug=40263&name=METHOTREXATE

Yes, but four things to consider:
1) There is a caveat with MTX specifically because of oral administration and the fact that it is not a prodrug. With only one exception, notice that every one of those patients listed nausea as the very first complaint. Therefore, it's very likely that these patients were taking the oral form of MTX. MTX is immediately active upon ingestion, and for some (or perhaps most if not all?) patients will cause temporary but highly symptomatic damage to the gastrointeistinal tract. This undoubtedly leads to fatigue for many as well. This can very likely be averted with SQ adminstration. I never even bothered trying oral for this reason in addition to the better absorption.
2) askpatient.com in particular is going to self-select patients that have negative experiences, IMO. The actual prevalence is probably much lower than how it may appear on that site.
3) nocebo affect after reading the drug literature, reading other peoples' experiences.
4) As mentioned above, some of those patients may have gone on to experience bone marrow suppression, and fatigue was anemia related. This is an issue of improper dosage.

[Styx]

And it looks like one of those patients with fatigue and spondyloarthropathy was actually receiving MTX injections... of 100mg/wk(!!!). I'd like a hit of whatever her doctor was smoking.

This is one of the problems with reading patient testimonials: there are frequently pieces of context missing that are important to consider.

[Pisces24]

After my R-Chop, I had a series of 4 methotrexate shots in the spine. They were not that bad at all.  The first time I had bad nausea though as I couldn't keep anything down but the oncologist told me to ingest extra caffeine (ie soda pop and chocolate) which would help and extra fluids. It helped too. Otherwise I didn't get any side effects. The oncologist said the shot were to lessen the change of the lymphoma getting into my central nervous system.

They had me lay on my back for an hour after the shot and then I went home and laid on my back for 4 hours. I could get up to eat, go the bathroom, etc. but oncologist wanted me to rest / relax.

[MeShell]

Alright, Styx, I gotcha.  Don't really know what else to say to all of that, lol. Thanks for the input though.

Pisces, thanks for sharing your experience!