Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Sometime ago while perusing through the support group I read a discussion about how MTX made some of us feel. I don't remember who it was who shared how she coped with the nasty side effects but I decided to use her method. IT WORKS!
I learned the hard way TWICE already what happens if you don't follow the protocol that works for you.
She said the thing that helped her was drinking a lot of water on the day she takes her MTX. I also noticed I was losing a lot of weight because I wasn't eating. So I started drinking a lot of water everyday and snacking all day on healthy foods besides breakfast, lunch and dinner. I use to have nausea everyday. That slowly went away.
Last month I had a doctors appointment on the day I take my shot. I also ran many errands. By the time I got home I was wiped out. I work at home so on Tuesday's I am in the office all day. I relax. No running around. I know not everyone has that option. But when I run around I don't eat and drink like I should. The next day was HORRIBLE.
Yesterday I did it to myself again. I ate oatmeal at 9 AM.....my husband had a guy here working so I was tending to his needs, water, lunch, ran to Target for a potluck last night. Then later drove him home. Tried getting laundry done and side tracked a million times so I had one bottle of water all day. I didn't eat lunch until 2 PM. Then at the potluck had a plateful of food. Got to bed at 10 PM and was dead dog tired.
Woke up this morning with the worse nausea I have ever had since having RA. I could barely move, didn't want to get out of bed. Knew at 8:30 I would have to start work answering phones, paper work etc. At 5 AM this morning I was out there eating a banana, then half a bag of Ritz crackers, had ginger tea or half of it, yuck I think that made it worse. Husband fed horses for me. Thank God because I didn't know how I was going to do it.
Finally sitting hear sipping my English breakfast tea and starting to feel human. I am taking it easy or as easy as I can today.
But that whole drinking and eating really helps. MTX is so Toxic I think all that water 6-8 glasses, and eating helps dilute the poisons enough and still keeps me pain free.
I don't remember who made the suggestion but I wanted to say THANK YOU to her or him now. It works for me and maybe someone new will read this and see if it works for them. I think it's important to get as much out there as far as information and help because RA really is different for each person.
Melissa
I learned the hard way TWICE already what happens if you don't follow the protocol that works for you.
She said the thing that helped her was drinking a lot of water on the day she takes her MTX. I also noticed I was losing a lot of weight because I wasn't eating. So I started drinking a lot of water everyday and snacking all day on healthy foods besides breakfast, lunch and dinner. I use to have nausea everyday. That slowly went away.
Last month I had a doctors appointment on the day I take my shot. I also ran many errands. By the time I got home I was wiped out. I work at home so on Tuesday's I am in the office all day. I relax. No running around. I know not everyone has that option. But when I run around I don't eat and drink like I should. The next day was HORRIBLE.
Yesterday I did it to myself again. I ate oatmeal at 9 AM.....my husband had a guy here working so I was tending to his needs, water, lunch, ran to Target for a potluck last night. Then later drove him home. Tried getting laundry done and side tracked a million times so I had one bottle of water all day. I didn't eat lunch until 2 PM. Then at the potluck had a plateful of food. Got to bed at 10 PM and was dead dog tired.
Woke up this morning with the worse nausea I have ever had since having RA. I could barely move, didn't want to get out of bed. Knew at 8:30 I would have to start work answering phones, paper work etc. At 5 AM this morning I was out there eating a banana, then half a bag of Ritz crackers, had ginger tea or half of it, yuck I think that made it worse. Husband fed horses for me. Thank God because I didn't know how I was going to do it.
Finally sitting hear sipping my English breakfast tea and starting to feel human. I am taking it easy or as easy as I can today.
But that whole drinking and eating really helps. MTX is so Toxic I think all that water 6-8 glasses, and eating helps dilute the poisons enough and still keeps me pain free.
I don't remember who made the suggestion but I wanted to say THANK YOU to her or him now. It works for me and maybe someone new will read this and see if it works for them. I think it's important to get as much out there as far as information and help because RA really is different for each person.
Melissa
What many have found is that eating a high carbohydrate meal BEFORE taking MTX helps. Good excuse to eat pizza!
When I was taking high dose MTX I used to schedule my work so that it was fairly sedentary for a couple days post dose when my energy level was zapped.
Now I take Humira and only 7.5 mg of oral MTX and there's no nausea whatsoever. And next to no loss of energy.
What I did have issues with was my liver. The enzymes just kept going up and up. I saw my rheumatologist yesterday, and he is anxious to see if I can tolerate mthx after being off of it for 6 years. I see the liver specialist in July, and it depends upon what she says. He is talking liver biopsy, and I am talking "NO!" Been there, done that and not interested in revisiting that kind of pain.
Well, I am glad you have more or less figured out how to cope with mthx. I do understand about having stomach issues with an injection. When I was on Actemra infusions, from the very first time I got nauseous and my stomach hurt. It just got worse and worse, and coupled with not working after 8 months, that was a fail for me.
Just a quick note. I am taking cholesterol medicine plus now MTX. My liver function went up. My doctor recommended taking a supplement "Milk Thistle". I take a couple a day and my numbers are back into the acceptable range. Look it up and see what you think.
no one in my immediate circle really is too interested in how i micromanage the meds or the symptoms from the meds but I agree that tweaking helps me ameliorate the more immediate affects. to me the folic acid, the leucovorin and the timing are the most crucial along with no booze, period. i hate the brain fog from it more than anything. i'm getting stupider every day :)
i have a buddy in town who has been taking mtx for RA for 30 years. i figure by that point we will not be as hyper observant about this ole dmard.
depot
I never said that injectable MTX was not toxic. Of course it is.
But when the method of delivery [injection, e.g.] bypasses the digestive tract, it makes the drug much easier to tolerate in terms of nausea.
I think it does help keep my liver functioning. And it seems to counter the effects of Arava.
But in the 9 years I was on mthx before, it did not stop the gradual rise in liver enzymes. I do think it helps the liver recover, once I got off the mkthx.
Or maybe this time will be different? I sure hope so!
could your liver be pissed from something else like fatty liver? alcohol? weight? metabolic stuff? i wish you well with your liver biopsy and I hope you get all the answers that you need :)
depot
I've really noticed the last few weeks my day of my 1 ML injection evening and next day are getting worse and worse. My pain is just about non-existent now. Sure, my hands are stiff in the AM as is my whole body for about 2 hours but really the major pain I had this time last year was unbearable and I cried a lot in the shower and had every emotion a person could have.
A couple of weeks ago I woke up to a very swollen tendon in my left elbow area and it hurt so bad I was crying. In a couple of days it was gone with ice and a brace,
My big complaint was my doctor not being available or being told go to urgent care. Like what could they do? Really, spend 5-6 hours there. Uh, no.
Tuesday AM I do my injection and feel pretty darn good until about 5 PM or so. Sometimes longer but come Weds. UGH....they get worse and worse. The exhaustion, nausea, the complete feeling of just being "unwell." Just moving around the house last night and today SO HARD. Thursday...like it never freaking happen and everything is great until the next Tuesday.
Today I finally called the doctor because he was seeing me every 2 months with labs but at last appointment changed it to 4 months. I was suppose to have blood work June 9th...oops.....and a week before my appointment in August. So he (scheduler) tells me get labs tomorrow (because I sure can't drive today) and has me seeing the doc on Monday! WOW!!!! Maybe the fact that the MTX is getting worse the day after or how I feel? Maybe because I am having no pain they will lower the amount I inject.
I always counted on my Vyvanse (amphetamine) for ADHD for the brain fog and fatigue and it's helped up until the last few weeks.
Maybe I am not resting enough? Maybe I need more sleep but I can't sleep like I use to.
So wish me luck for Monday. Must be serious to get me in that fast. My PCP is usually a month out.