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This week it will be 5 months since I started taking methotrexate. I’m grateful to say that my overwhelming experience has been positive. The anticipated post-medication nausea, headaches, and exhaustion have been minimal. And my body’s overall response to the medication has been positive. I find myself with almsot “normal” energy on many days, which has been fabulous for my spirits, my life and my business.
But … and you know there’s always a “but” … I do have one side effect that is a bit troublesome. I think MTX is affecting my menstrual cycle. Now I’ve discussed this with both my GYN and my Rheumy, and they both say this cycle distruption is “normal” for a 45-year-old. But I didn’t have the slightest cycle disruption until 3 months ago. Nothing had changed in the last 8 years! So why, all of a “sudden,” am I experiencing complete menstrual chaos?
Everything I find about MTX and menstrual cycles says there is the possibility of disturbance or spotting. What I don’t know is whether it can induce complete menopause or if the effect is amenorrhea with hormones still present in some level. And again, it is frustrating to have the docs both saying … don’t worry, you’re 45 anyway. That seems like a lame excuse!
I know … I know … it IS a minor side effect in the big scheme of things. And it certainly isn’t significant enough for me to stop taking methotrexate. Plus I think of friends who have had emergency hysterectomies for a variety of dramatic reasons when they were younger than I am now. And it was all bound to happen eventually. But I kinda like estrogen … it helps with a lot of vital functions in my body. And I just wasn’t mentally prepared for this … thought I had about five years to wrap my brain around “the change.”
They say that nothing is ever simple. And that’s been the story of the last couple of Sundays (my MTX day) for me. Sunday of Week 4 was pretty good … if you don’t count the two feet of snow that fell the day before. Sunday of Week 5 was pretty nasty … but not really because of the MTX.
I’m still finding that the ginger nearly eliminates the nausea. And that MTX makes me a bit more tired than usual.
But the biggest lesson over the last two weeks has been what my limits are. The snowstorms of February 2010 taught me that I may be able to do something I used to do (like shovel snow for an hour), but that the price I will pay is a steep one. And because I work in a business where happy clients are essential to my livelihood, it’s been a challenge to figure out how to reschedule people and not hurt myself even further.
I have had alternating days of great accomplishment and productivity. Followed almost immediately by days of incredible fatigue and frustration. But somehow this still feels like an improvement.
Last summer when the RA hit my life with full force, I had a very simple rule. Do only what is necessary and take it very slow. My main symptom was overwhelming fatigue. I did have some joint pain, but it was 20% of the issue while fatigue was 80%.
Then when I began to take medicines for the RA, the rules changed. The fatigue levels are improving markedly, and actually that is making it harder. I find that I can do more, but that this is making the pain levels go up quite a bit. So, the new rule seems to be do whatever I can one day but don’t forget I will pay for it the next day with exhaustion and discomfort. And if I go really nuts, I WILL be in pain.
My big challenge seems to be finding a balance of accomplishment and recovery. MTX day / Sunday seems to fit well as a recovery day. However, I clearly need more than one recovery day in the week. This is a very new concept for me … and one that will be another part of this luscious journey.
Week Three (Sunday) was pretty much a non-event, which is maybe why I haven’t blogged it until now (Wednesday). I moved up to 7.5 mg, which is three pills. Only one pill away from the final dose of 10mg/week.
As with Week Two, I did start with some crystallized ginger & ginger tea on Saturday and continued on Sunday.
I took one pill at lunch on Sunday, and ventured out of the house to spend some time with friends. The afternoon brought a pretty good energy level and no real nausea. Sunday at dinner I took the remaining 2 pills, and again experienced nothing significant in terms of side effects.
Now I am wondering if the nausea from Week One was due to the glass of wine I had on Saturday night. I haven’t had any alcohol since, and the nausea is certainly less significant. We are planning dinner with friends this coming Saturday night, but I think I’ll skip the wine … much as it pains me …
And I have to say that the last two Sunday nights have been poor sleeping nights … but not because of MTX. Instead, I have had a sick and coughing husband who keeps waking me with his restlessness. So I’m now wondering if the overtired feelings on Monday are really all the MTX or not.
I have had some mouth tenderness, but nothing that I’d really count as a sore. Just little spots that seem slightly irritated for a brief time. And no hair loss yet either. Hoping it stays that way. I do take 1 mg of folic acid every day to help combat this.
Maybe this weekend will be more “normal” and give me a better idea. But overall, I continue to be hopeful that the side effects will remain small and the MTX benefits will be well worth the effort.
Thanks for listening …
I’m pretty sure that ginger is my new hero.
This week I am moving from 2.5 mg to 5 mg of MTX. So I anticipated a lot more nausea than last week. But thankfully I planned ahead. Since I know that ginger helps manage nausea, I started with ginger tea on Saturday morning. And had about five small pieces of crystallized ginger in the afternoon and evening Saturday. I may ultimately take ginger capsules, but wanted to start with “real foods” since I could see what my dose really would be. (Can never be sure that supplements deliver what the label says.)
Sunday morning I decided to do one of my two intense yoga classes of the week. The theory was that if I’m MTX-tired on Monday, I won’t have to drag myself through a hard class again until Thursday. Normally, I have a smoothie (mostly veggies & fruit) every morning. So after yoga I made a carrot/orange/ginger smoothie. Have to say I got a little overzealous with the ginger … but fundamentally it’s a good flavor.
After the smoothie, I took my two tabs of MTX (and all my other meds/vitamins). Then I just settled down to do some laundry and watch a couple shows from the DVR. Nothing like a little laziness to make me feel better! I also munched a few ginger snaps … which was mostly just a yummy indulgence. The cookies really don’t have as much “active ingredient” as the crystallized ginger.
By 4pm I’d only had minor queasiness … nothing at all as intense as last week. However, the tiredness did start to set in and was solved by a short nap.
By 7pm I was ready to declare ginger the hero of the day! Now the next test of the 5mg will be how tired I am on Monday …
The rheumatologist says, “We have to treat your RA aggressively. We want you to feel young and stay active, plus this will keep your life expectancy up where it should be. So let’s add methotrexate next.” Okay, I’m not a hard sell … in fact I was worried that I would have to sell him on MTX. Apparently not.
Despite all the things I’ve read online about wicked MTX side effects, I’m on board with this medicine. Not willing to take any chances with my joints, which so far are in pretty good shape. The good thing is that I’ve also read some great ideas online about how to mitigate the MTX side effects. Hoping to find a good balance between benefit and downsides … and that’s really all up to my body.
I filled the MTX prescription on Thursday, along with a scrip for 1 mg daily of folic acid. Decided to start the folic acid right away, but waited on the MTX until Sunday night. (Last night.) I also have tried to add more folate-rich food into my diet – dark, leafy greens and citrus. That’s easy!
You need to know this about me … I’m not good at patience! So the days between Thursday and Sunday were full of anticipation for me. I spent more time than I probably should have wondering what my side effects would be. But I really wanted to get on a Sunday schedule with MTX.
First week, I’ll take just 2.5 mg. Next week we’ll move to 5 mg. The following week to 7.5 mg. And then the final dose of 10 mg in week 4. More weeks that I’ll have to be patiently waiting to see how the full dose affects me and my life.
Yesterday evening our family had a birthday dinner for one of the kids. Taco dinners are a favorite … and a moment of great gluttony for most of us! Considering I didn’t know how the MTX would make me feel, it kind of sucked to moderate my taco intake. (More leftovers for another day!) But I also never do well with strong medicines on an empty stomach. So … I ate up. And then had birthday cake. No wine, no coffee … which generally upset both my stomach and my sleep.
After dinner I opened the MTX bottle, and my first thought was “oh these are just little pink pills … so little … how bad could it be?” Weird thought, huh? Took the pill and went to watch a particularly engaging TV show. Thank goodness for that. I was queasy and felt yucky for most of the two hour show. But nothing particularly awful. And by the time the show was over, I felt mostly normal.
I do feel a little extra tired this morning. It was harder than normal to get out of bed. But that could be the side effects of an extremely busy and emotional week … not the MTX.
So far, so good … as we say at my house.