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.
This Luscious RA 
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April 5, 2010 at 5:15 pm
Sue
Hey, just stumbled across you bolg and thought I would leave a comment about the methotrexate.
I have taken it for many years, both in tablet and as injections. Injections were easy enough but my mind got everything out of context and in the end I went back to tablets.
Currently I am almost pain free from my ra but I tire very easily and my joints in my feet and hands are the worst. Started with it in my 30s and now I am 51.
I hope that one thing here may help you 🙂
Work out how long it is from taking your meds until you start to feel bad and tie this starting point in with when you go to bed. That way you should sleep through a fair bit of the low point.
I am rubbish for roughly a day and a half. I take my meds on a Sunday, stay in bed on a monday and manage to start my week on a Tuesday afternoon! I plan my life around this and try to look upon these two days as enforced rest to enable my body to rest and build up some energy! There are anti-sickness medications you can take but as I say I manage mine because it forces me to completely rest.
I take my tablets with bread or cake! Carbs seem to help me considerably, I eat a good solid meal before I take my meds, (17.5mg in one go . . . spreading them out didn’t buy me anything and to some degree spun out the worst side effects), and I eat small “high carb” meals to stave of the nausea for two days after.
Lucozade seems to quench the strange thirst I get after my meds and good old mints help with the tinny taste!
Do take your folic acid? I take it every day, not methotrexate day, as it helps the side effects considerably.
If you take Ibruprofen for the pain see if you can get something to take that will help prevent complications arising in the stomach. Pretty normal practice I think so you may have this anyway.
Hopefully, something in the above may help.
Take care . . . Sue
April 5, 2010 at 10:22 pm
thislusciousra
Sue,
Thanks so much for all the detailed thoughts and experiences! I know they will help me, and anyone else who finds this blog. I have been dealing with a bit of a shoulder flare, so haven’t been able to write much. Will post my MTX and other updates soon I hope!
Barbara / RAinPA
April 9, 2011 at 10:15 am
Cathy
All of these stories sounds so much like mine! I was diagnosed back in December with RA and I’m 59. My dad had it had and a really bad case where nothing really worked for him. I seen the pain he went through and not something I wanted but here I am. The stiffness in the mornings before I started treatment was a killer…..I was wheel chair bound so I thought….had a terrible time walking and talk about tired! I could barely blow dry my hair for the shoulders were so inflamed…..but yet the hands and the feet were the worst. I’m taking 6 pills once a week of the Methotrexate…and that is every Wednesday night before bed…..the first time I took these….the next morning waking up was a miracle! Of course I was on Prenasone also but weaning off that now…..down to half a pill of that until gone. I just hope the Methotrexate will still work and I still feel fine once the Prednasone is out of the picture. Right now I feel pretty good….I have some days where all I do is lay around and yes you do know when to call it quits or you will suffer the following day or two….it’s baby steps with me from here on out. Has anyone gotten on disability over this?
May 18, 2012 at 3:58 pm
Niomi
I to have recently started my own personal journey with MTX or as I call it: METHO or My Chemo Meds!
I was looking for information on wether or not MTX can cause disruptions in my menstrual cycle and your blog here is the first thing I found! So of course I begin reading the different posts and am enthused to hear of a journey that is all too familiar. I am a 35 year old mother of 3; who takes care of my quadriplegic father 40+ hours a week. Sometimes I
May 18, 2012 at 4:04 pm
Niomi
I to have recently started my own personal journey with MTX or as I call it: METHO or My Chemo Meds!
I was looking for information on wether or not MTX can cause disruptions in my menstrual cycle and your blog here is the first thing I found! So of course I begin reading the different posts and am enthused to hear of a journey that is all too familiar. I am a 35 year old mother of 3; who takes care of my quadriplegic father 40+ hours a week.
Sometimes I feel so overwhelmed, i don’t knw if i can make it! I thank you fot shedding some light on such a painful and truly scary disease.
on such a painful and s
May 18, 2012 at 7:40 pm
thislusciousra
Niomi – thanks for posting! I’m glad my blog helps you feel less alone. I know all the blogs I fund helped me! As for MTX, after almost two years the downsides are pretty minimal. I’m sure it’s part of why I feel better. Hope you will improve too!