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View Full Version : Sorry guys, another MTX question, probably number 10000.



debbie-b
12-30-2010, 07:50 AM
Just got back from my rheumy.
He finally got of his " vitamins cure everything" bandwagon.
Now he is starting me on prednison, mtx, folic acid and flexerol.
I've got to tell you friends, I AM SCARED.
I have read about the hairloss, nausea and all the other nice side effects from mtx and prednison.
I also don't have a set schedule at work, sometimes I am off on tuesday and sunday or wednesday and friday. I hardly ever have two days in the row. Plus I never know what day I am going to be off work.
Do I have to take the mtx on the same day every week?
Can I take it at night?
I am sitting here shaking, just thinking about taking it for the first time. Which I will do this weekend, I am actually off saturday and sunday.
Please family, could someone give me some tips?

Debbie

tgal
12-30-2010, 08:44 AM
I can't answer the MTX question because I can't get anyone to work on that with me. I am on the prednisone (and 10 other meds) and I know it is a scary time. Try to remember that not all people get all the side effects of each med. You may be one of the people that get very few. Try not to "borrow trouble" as my mom would say until you know how it is going to react on you. Be prepared but not overly worried if that is possible.

Others will be on here soon about the MTX. Just remember that we are here for you. I wish there was more that I could do *huge*

predcheeks
12-30-2010, 01:33 PM
I was on methotrexate for about a year. It had to be taken the same day everyweek but after checking with my dr..it was ok if it was a there were a few hours difference each week. One week I forgot and didn't take it until the next day..and nothing happened- i would check with your dr though. the dr also put me on leukovorin..it helped to prevent the yucky side effects-hair lose and mouth sores. i know it's so overwhemling being stuck on a new med like that! i remember being sooo freaked out..but i promised you will be ok! like any other med-you have to figure out the dosage that would be right for you. i had to take it as an injection because the oral kind made me too nausous. if you have any other questions about it..let me know and i'll help with what i can. just remember that the medicine is there because the dr thought it would be better for you than whatever is going on with your body..so hopefully it will help! i just remember i was reallllly sleepy the day after so if posisble to arrange your work schedule around it..i would recommend it. everybody is different though so maybe you won't have fatigue as one of the symptoms. good luck and i hope it helps!!

debbie-b
12-31-2010, 02:02 PM
I can't answer the MTX question because I can't get anyone to work on that with me. I am on the prednisone (and 10 other meds) and I know it is a scary time. Try to remember that not all people get all the side effects of each med. You may be one of the people that get very few. Try not to "borrow trouble" as my mom would say until you know how it is going to react on you. Be prepared but not overly worried if that is possible.

Others will be on here soon about the MTX. Just remember that we are here for you. I wish there was more that I could do *huge*

Thank you Mari,

I am not stressing over it, but it does scare me a little. I have heard many horror stories about it, both MTX and prednisone.
I just picked it up from the pharmacy and of course I have been reading about all the possible side effects.
Just reading it, makes me want to vomit.

Debbie

debbie-b
12-31-2010, 02:17 PM
I was on methotrexate for about a year. It had to be taken the same day everyweek but after checking with my dr..it was ok if it was a there were a few hours difference each week. One week I forgot and didn't take it until the next day..and nothing happened- i would check with your dr though. the dr also put me on leukovorin..it helped to prevent the yucky side effects-hair lose and mouth sores. i know it's so overwhemling being stuck on a new med like that! i remember being sooo freaked out..but i promised you will be ok! like any other med-you have to figure out the dosage that would be right for you. i had to take it as an injection because the oral kind made me too nausous. if you have any other questions about it..let me know and i'll help with what i can. just remember that the medicine is there because the dr thought it would be better for you than whatever is going on with your body..so hopefully it will help! i just remember i was reallllly sleepy the day after so if posisble to arrange your work schedule around it..i would recommend it. everybody is different though so maybe you won't have fatigue as one of the symptoms. good luck and i hope it helps!!

Exactly what you are talking about, that is what I am afraid of.
My company will not budge, if you are full time, you have to be awailable 6am-10pm, 7 days a week.
If I request to have, say every Monday off, I will not be considered full time anymore and I will loose my health insurance.
These people are real jerks, I have worked there for five years and just called in sick one time, that was 2 weeks ago.
Before that, I had never called in, even though we get 3 paid sickdays.
I have to try and take the MTX a day before my next day off and see how it goes. If I get alot of nausea, I have to have to figure something out, about my days off.
I get mild nausea from Mobic ( anti inflametory), so I can imagine how nauseaus I will get from MTX.
Well anyway, thank you.
Oh another question, can I take the MTX at night before I go to bed, or when is the best time to take it?

Debbie

Debbie

predcheeks
12-31-2010, 05:53 PM
first of all you are very strong for having kept that schedule! i don't know how you do it! maybe you should explain to your doctor that you are concerned about the possible side effects and your work schedule..and see what he/she recommends. i know that everybody's bosy is different and when i did research on the med when i was on it..a lot of people didn't have the same side effects as me. Your plan sounds good to take it before your next day off and see how your body reacts to it. I know that a lot of people say after being on it for a couple weeks..their symptoms start to get better. I would keep in the back of your mind that injections are another way to go with that med if you do feel nausous from the pill form. Definatley drink lots of water and gatorade the day you take it..it helped me with energy! Good luck and let me know how it goes! I'll keep my fingers crossed for you!

debbie-b
01-07-2011, 08:02 AM
first of all you are very strong for having kept that schedule! i don't know how you do it! maybe you should explain to your doctor that you are concerned about the possible side effects and your work schedule..and see what he/she recommends. i know that everybody's bosy is different and when i did research on the med when i was on it..a lot of people didn't have the same side effects as me. Your plan sounds good to take it before your next day off and see how your body reacts to it. I know that a lot of people say after being on it for a couple weeks..their symptoms start to get better. I would keep in the back of your mind that injections are another way to go with that med if you do feel nausous from the pill form. Definatley drink lots of water and gatorade the day you take it..it helped me with energy! Good luck and let me know how it goes! I'll keep my fingers crossed for you!

Thank you so much.
Ok, I am freaking out now. I am going to take my first dose on monday. I am working 11am-7pm that day. We useally eat dinner after I get home. That is probably not a good idea, huh?
Should I take the MTX right before I go to bed? Can I eat anything during the day? What should I not eat?
I take my Ambien on an empty stomach, right before bed and it works within 10-20 minutes, should I take the MTX right after it? OMG, I am panicking.
I am going to be off work on tuesday and wednesday, but on thursday I have to work a 8 hour shift, with heavy lifting and fast pace running around.
I can't do this job much longer, but I am unable to " learn" another job, because of the brain fog I have 90% of the time.
I am so sick of this.
Please give me some tips, on how I can handle this MTX bs.

Debbie

predcheeks
01-07-2011, 05:49 PM
hey..don't freak out!!!!..you will be finnnne!! i would say eat dinner then take it..something on your stomach is probably a good thing. i took it before bed..so i would say that's also a good thing..but everyone's body is different so if you take it then and it doesn't work for you then you know for next time:) i never noticed anything specific not to eat..i didn't really change my diet at all. uhg it sounds like your job would take a lot out of you! i am in the process of finding a new job because i had figure out a med combo that was right for me. i had to quit my old job...one of the hardest things i've ever had to do! i realize now that it was a great choice because i got my life back by getting my lupus under control first. thank goodness you can get paid while out on disability. i agree with you that learning a new job sounds so hard right now but i think i'm finally up for it!i wish you the best of luck!!!!

magistramarla
01-07-2011, 10:00 PM
Debbie,
There is a thread here called "It's M Day". Several of us discussed taking MTX. It might help you to read it.
I've been taking it for 18 months. The pill form made me terribly nauseous, but I tolerate the injection fairly well.
My hubby gives me the shot every Sunday night about an hour or so before bedtime. I then relax with a cup of tea and some dark chocolate.
For some reason, the chocolate helps with the bad taste in my mouth that the MTX causes.
I sleep through the worst of the nausea.
The next day, I'm still a bit queasy and "out of it" until after lunch. By 2 pm, I feel fairly normal.
I hope that this helps.
Hugs,
Marla

debbie-b
01-08-2011, 03:58 AM
Thank you predcheeks,
Your tip really helps, because my rheumy said to take it, whenever I want to.
But it is better to hear from somebody who actually takes it themself, to know what was best for them.

Debbie

debbie-b
01-08-2011, 04:09 AM
Debbie,
There is a thread here called "It's M Day". Several of us discussed taking MTX. It might help you to read it.
I've been taking it for 18 months. The pill form made me terribly nauseous, but I tolerate the injection fairly well.
My hubby gives me the shot every Sunday night about an hour or so before bedtime. I then relax with a cup of tea and some dark chocolate.
For some reason, the chocolate helps with the bad taste in my mouth that the MTX causes.
I sleep through the worst of the nausea.
The next day, I'm still a bit queasy and "out of it" until after lunch. By 2 pm, I feel fairly normal.
I hope that this helps.
Hugs,
Marla

Thank you Marla,

I have read about 80% of that thread, it is very informative.
I just have a few specific questions about when to take it, since the doc left it up to me.
It is good to know, that so many of you have experience with this disgusting medicine.
My doc also told me that if I get to sick from the pills, he will put me on the shot.
To be honest, just thinking about the pills makes me nauseous and nervous.

Cross your fingers for me on monday.

Debbie

Saysusie
01-08-2011, 10:34 AM
Good Luck on Monday, let us know how you feel. When you take the MTX may be a trial and error thing for you until you find a time that works best for you with the least amount of side effects. For many, an entire day has to be set aside in order to deal with the MTX. I wish you the best :-)

Peace and Blessings
Namaste
Saysusie

debbie-b
01-08-2011, 05:02 PM
Good Luck on Monday, let us know how you feel. When you take the MTX may be a trial and error thing for you until you find a time that works best for you with the least amount of side effects. For many, an entire day has to be set aside in order to deal with the MTX. I wish you the best :-)

Peace and Blessings
Namaste
Saysusie

Thank you Susie, that is just what I need, good thoughts from all of you.
I feel like a big baby.

Debbie

magistramarla
01-08-2011, 10:19 PM
Debbie,
I hope that you read this by tomorrow. I have another hint to give you.
Hopefully, your doc has started you on folic acid. MTX strips folic acid from your body, and we have to take it to replace it.
Taking the folic acid seems to help with the nausea.
The natural source of folates is leafy green vegetables. I've never been much of a salad eater before, but now I find myself craving salads.
I've found that if I eat LOTS of salad the day or two before my shot, I have less nausea.
It may be a placebo effect, but hey, it works for me, and I'm eating healthy foods!
Hugs,
Marla

tgal
01-08-2011, 11:14 PM
Good Luck to you Debbie! I will be thinking of you. Let us know how it goes!

debbie-b
01-09-2011, 12:01 AM
You guys are awesome,
Marla, my rheumy gave me a prescription for folic acid and sunday we are going to eat at Outback Steakhouse
I will have a big salad and another one monday for lunch.
Thanks again for thinking about me.

Debbie

magistramarla
01-09-2011, 10:13 PM
Hey Debbie,
I just had my shot, and I thought of you.
I ate a big salad with my dinner and I'm now sipping tea with some cheese and crackers - soon to be topped off by a chocolate, then bed.
Hopefully, I'll feel decent in the morning. I usually start my Monday mornings with something bland, like a bowl of warm rice or oatmeal.

I hope it goes well for you tomorrow.
Hugs,
Marla

debbie-b
01-11-2011, 05:49 AM
Well guys, I took my first dose last night. As of now, it is not to bad. I am nauseated, have a slight headache, but I am very weak. Is it normal to be so very weak?

Thanks for all your tips,guys.

Debbie

red246
01-11-2011, 06:55 AM
Hey Debbie! How are you doing today? I am weak after I take it. I started my second go around this Friday. I was terribly nervous about taking it again, but it wasn't too bad. I was nauseated, but not terribly bad. My biggest problem was being weak and achy. I take it right before I go to bed. For me, the 2nd day is the worst. Also, do not be surprised if next week is harder than this first week was - I seem to remember that from the first go around. You will find what does and doesn't work for you and you will get through this! (((HUGS)))

magistramarla
01-11-2011, 10:05 PM
Hi Debbie,
I'm glad that you got through the first dose without many problems.
Keep trying with it, and if the pills are too harsh for you, switch to the injections.
Hugs,
Marla

predcheeks
01-16-2011, 10:46 PM
debbie,how are you doing??i'm happy you made it through your first dose. i remember feeling very weak the day after. don't forget to keep yourself hydrated..gatorade was my best friend. i agree with marla, if the pills hurt your stomach try the injections! i wish i knew about this site when i started methotrexate!

debbie-b
01-17-2011, 02:49 PM
debbie,how are you doing??i'm happy you made it through your first dose. i remember feeling very weak the day after. don't forget to keep yourself hydrated..gatorade was my best friend. i agree with marla, if the pills hurt your stomach try the injections! i wish i knew about this site when i started methotrexate!

Thank you for asking. Tonight is MTX night, I have to to increase the dosage. Hopefully all goes well.
But if I have to suffer to much, I will ask the rheumy for the shot, he already offered.

Debbie

magistramarla
01-20-2011, 09:32 PM
Hey Debbie,
How did that second dose go? Are you having a better week?
Thinking of you....
Hugs,
Marla

debbie-b
01-21-2011, 03:26 PM
Hey Debbie,
How did that second dose go? Are you having a better week?
Thinking of you....
Hugs,
Marla

Hi Marla,

Thanks for asking.
This week was worse, but for some reason, tuesday I felt ok, just a little nausea, but wednesday, thursday and especially today, lots of nausea and stomach cramps. I had to work like that. yuck
I have called my rheumy today, I have to go in monday, for a MTX shot, to see how well I tolerate IT. If I feel better with the shot, he will put me on self injections.

Debbie

magistramarla
01-22-2011, 06:55 PM
Hi Debbie,
I'm not surprised. For me, bypassing my digestive system and going to the injections made a huge difference. It still makes me feel yucky for a day, but I'm able to tolerate it. I'm chicken to give myself a shot, but my hubby is great at it. He used to give Kayla her allergy shots. He jokes that he "gets to be a prick" once a week.
I think that we have several members who prefer the injections to the pill form of MTX. I hope that you have better luck with the injections, too.
Let me know how it goes!
Hugs,
Marla

debbie-b
01-24-2011, 02:47 PM
The nurse showed me how to give myself the shot and then handed it to me and I gave it to myself.
It was no big deal, no pain whatsoever.
Now I have to wait and see, how well I do with the shot.
I do have to go and get my blood drawn again, I just went last friday, but my liver # were off, I don't remember what it was, but the # is suppose to be 30 and mine were 64.
That means if my # don't get better or get worse, I have to stop MTX.
So she gave me the prescription for the shots, but I have to go friday again to get blood drawn and call the nurse on monday noon, if the blood test is ok, I will start the shots on monday night.
Has anyone else have bad liver readings after only two weeks of MTX?
Man I hope things work out, because without MTX, what else is there?

Debbie

magistramarla
01-28-2011, 10:40 PM
Hi Debbie,
I hope that all went well with your blood work.
My rheumy in Texas checked my blood often. The one that I have now only sees me twice a year, and she didn't even schedule any labs for my Feb. appointment.
She didn't discuss my lab results with me in Oct, either. She just said that it was all "beautiful"!
I hope that the MTX isn't damaging my liver - I'm not so sure that this doc would catch it.
Hugs,
Marla

debbie-b
01-29-2011, 09:12 AM
Hi Debbie,
I hope that all went well with your blood work.
My rheumy in Texas checked my blood often. The one that I have now only sees me twice a year, and she didn't even schedule any labs for my Feb. appointment.
She didn't discuss my lab results with me in Oct, either. She just said that it was all "beautiful"!
I hope that the MTX isn't damaging my liver - I'm not so sure that this doc would catch it.
Hugs,
Marla

Hi Marla,
My doc had me on a standing order, at the lab, for every two weeks, for the next 12 weeks. But after the bad blood test last week, he had me go back after only one week. Monday morning I have to call the rheumy office, to find out how the last test went, if the liver enzymes are down, I will give myself the shot monday night.
I am surprised, that your doctor only has you test your blood twice a year.
Here is my standing order at the lab, every two weeks for 12 weeks, ones a month for three months, every two months for six months, after that ones every three months.
Maybe it is because I have had hepatitis, when I was five years old. I don't know which one I have had A,B or C, my mom died 15 years ago, so I can't ask her. The only thing I remember from that time is, that I was in the hospital for 6 weeks, in isolation, not even my mom was allowed in my room. But I remember that there was a window, where the top part of that window was open, so that I could talk to my mom and that she always slipped a chocolate bar through that window. lol

Debbie

magistramarla
01-29-2011, 04:56 PM
Hi Debbie,
I was told by a nurse that any patient on MTX should have blood work at least every three months. I think that my new rheumy isn't too bright.
That's why I'm trying to get an appointment with one in San Francisco, at a teaching hospital.
I hope that your ab work is ok on Monday. The MTX is helpful, and the side effects are tolerable.
Hugs,
Marla