2010: An Injectable Methotrexate Oddesy

By BerserkeRA Thursday, January 21, 2010

Cue 'Also Sprach Zarathustra' Foot in mouth

 

I went on methotrexate last fall, and it seemed pretty good.  However, when my dosage was upped to therapeutic levels, I got some nasty side effects -- I was nauseous 3-4 days per week (even with prescription anti-nausea meds) and it wasn't related to digesting the pills (as it started 24 -36 hours after taking them) and had incredible, earth-stopping fatigue 7 days a week.  It worked, however, and I thought I might just have to live with it for a while (and maybe it would settle down).

 

My Rheumie's face fell when we discussed this in my last appointment.  I quickly told him I didn't what him to think it wasn't working (scared, y'see, that he would take me off it and then I'd go back to the fun world of sitting in a chair and cursing my hands and feet).  I pushed very hard for the addition of a biologic... which he didn't want to do yet.

 

His solution was to try the injectible methotrexate at the same dose as the oral form.  He told me the injectible was about 20% more effective than the orals.  I said "GREAT!  But, hey, will it fix these side effects?"

 

His face fell again.  He looked at his lap.

 

I said: "I've got to fix the fatigue at least.  I can't see continuing to teach for 17 more weeks like this.  I mean, I think I have to go on disability every single day and I hate it."

 

He nodded sadly and said "It might help with these sides, but its not probable.  We might have to take you off of the methotrexate."

 

"Nooo!" I said.  "It works."

 

He looked me dead in the eye.  "Yes, it sounds like it is working, but the price you are paying...  That doesn't seem equitable."

 

Of course, the black tide of panic welled up in my mind.  No methotrexate?  But Plaquinal didn't do a dang thing for me except kill my appetitie.   What do I have to do, just suffer through the pain?  I'd rather go on disability...

 

"Let's try the injectible for a month.  If it doesn't get any better, we'll try a new direction -- maybe a TNF drug, and we might try that later anyway.  We might also try to partner the methotrexate with something else so we can lower the dose, but then the dose might be too low to be therapeutic.  We'll just have to see.

 

"But for now, let's focus on one change at a time and see if we can make it better.  Let's freeze all your other scripts and dosages.  By the way, do you think you can stick yourself with a needle?"

 

What a question, right?  I said I probably could (I have some background in medicine, and have given shots to animals, and assisted in injections for humans).

 

His office keeps a full time RN on staff to train patients in self-injection.  She was waaay cool and took away a lot of my nervousness.  Turns out methotrexate can be injected any old way you want (e.g SC, IM, IV, even straight into the bone marrow!) and it's effective.  He gave me the subcutaneous form.

Lene Andersen, Health Guide
1/21/10 7:30pm

I hope your wife wasn't stuck at home weaving incessantly during this odyssey? Smile

 

Also, I'm really happy the injectable meth is working for you!  back in the day when I was on it, I couldn't tolerate the pills - horrible stomach problems to and I started the injectable, as well and it significantly extended the time I was able to use methotrexate. 

 

And yes, RA definitely does not play by the rules. It's perverse that way. I'm still plotting revenge...

1/21/10 8:03pm

I think she was at home drinking, so she may have also been weaving... ;)

 

Yeah, I hope I can keep going with it (or at least find something better before i have to face going off it).  I'm just so relieved not be so fatigued all the time.  I still get about 4 hours of it -- it rolls in like clockwork 21.5 hours after I take the injection.  Hows that for weird??

Lene Andersen, Health Guide
1/21/10 8:20pm

sort of cool, actually, that you can pinpoint it that exactly.  Makes planning for the faceplant much easier!

1/29/10 7:17pm

Whelp.  Turns out my liver doesn't like the injectible so much.  I'm having to back way off on dose, and that forces my treatment down the biologic road.  Doing the insurance game now, and will hopefully know something next week or so. 

 

In the meantime, I'm trying to convince myself that the RA won't notice the big dose reduction...

 

I believe there are some meta-rules that RA lives by:  One for sure is that RA is a mofo... A second is that RA doesn't believe in playing fair.

Lene Andersen, Health Guide
1/29/10 7:53pm

Aw, crap. So sorry to hear that. Will keep fingers crossed that your insurance cooperates.

 

Y'know... you should do a post about RA's rules.  Got two of 'em already and I'd love to see more. Smile

2/24/10 8:53am

I'm going to do the rules post at some point -- I need to get me sense of humor back first :)

 

Unfortunately, my RA did notice the drop in dose (see rule #1) and my insurance company took its sweet time approving the Enbrel (just got the prescription in yesterday, and am now just waiting on them to fill it and deliver).

1/22/10 11:20am

I started on injectable MTX for the exact same reasons and have been totally satisfied with it! No nausea at all!! I still have a little fatigue for about 48 hrs after the injection BUT it has given Horrible night sweats! Does anyone else have this problem? But all in all i agree injectable MTX is the way to go! 

Anonymous
pat
1/29/10 5:16pm

I am new to RA, but my doctor put me on methotrexate and Arava, and the nausea is unreal.  I thought it was due to sinus stuff since it is the season for that, but maybe not.  However, if you take nausea vs the all-over joint pain, I'll take the nausea each time.  Unfortunately I am only on my third week of methotrexate - the Arava made me feel good for a small bit but then the pain hit back hard, so he put me on the new med. 

 

This is all still surreal for me.  I have been complaining of all-over joint pain for a long time.  My blood tests are positive for inflammation, but negative for RA.  The doctor claims this can be normal, that if I don't have RA I do have an inflammatory process within my body.  What do you "pros" say about that?

1/29/10 7:13pm

I'm hardly a pro, but your doc is right :)

 

Your doc can also give you an anti-nausea med to help with the sides, and be sure you read Lene Anderson's post on managing side effects.

1/29/10 9:00pm

thank you....he provided promethazine.  what was nice was that I was getting nauseous at work and discovered half a pill didn't put me to sleep and was able to ease the nausea enough to work.  will look at that post, as well as more on this site.  I am grateful you guys are here, but I am sorry you have RA.  :(

By BerserkeRA— Last Modified: 10/26/11, First Published: 01/21/10