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The start of methotrexate..

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Posted 3/13/2011 7:17 PM (GMT 0)
So I took the med last night. I feel some what sick to my stomach. I am real tired. I have been drinking my water but even drank a couple cups of coffee trying to wake up. No help so far. The sick to my stomach feeling is mainly when i stand or sit. Anything except lay down. So hubby got me movies to lay on the couch and watch but the one on now is Paranormal activities 2, uhh don't know how thrilled I am about that. Figured it was the perfect time to post and update. I hope the feeling goes away before i have to go to work tomorrow!! shocked I am glad it's not worse than this but I did manage to start kids breakfast and fold some clothes(huh 5 kids ...I mean 6 loads smilewinkgrin )
Hope you are all having a pain free day and that the depression boat has finally left us all. Take care and hugs to all of you. Heather
Posted 3/13/2011 8:18 PM (GMT 0)
Please keep us updated on how you are doing and feeling on Mtx
Posted 3/13/2011 9:54 PM (GMT 0)
I had to quit MTX due to the rollercoaster my body was put through week after week (I took it for six months) BUT!!! not everyone experiences this... there are tonnes of people out there who can tolerate MTX just fine.

Also, don't get too concerned if you're still experiencing ups and downs on it in the first little while. I've heard lots of stories from others who said it took their body months to get used to it but, once they did, it was plain sailing.

Good luck :)
Posted 3/13/2011 10:02 PM (GMT 0)
I am feeling for you. I started MTX when my 3 children were younger and it was hard but i think after about the third week i really noticed a difference with the joints not hurting as bad. i now take 2.5 mg 6 tablets one time a week. i also have monthly infusions of orencia. lupus, fibromyalgia, RA and a bunch of other junk.lol hang in there. i do take oxycodone 20 mg er twice a day. so idon't chase the pain it is a slow release all day and all night. i have break thru pain med but i rarely use it because as you know sometimes it doesn't help. you listed narcolepsy and low iron... have you had a metabolic panel run to check your b-12 levels. when mine were low i had b12 injections 7 days in a row and it helped a ton. also there is a drug for narcolepsy called...provigil. that helped me a lot before my diagnosis. Any how just some ideas i am not a dr. just a girl that has had many health afflictions and has been down the pharmacutical road many times.

Good luck with your health, may tomorrow bring more joy than pain.
Posted 3/14/2011 1:11 AM (GMT 0)
How much are you on? Sometimes you need to start with a low dose and build up to the higher doses. Worked for me anyway. Its a great med if you can tolerate it, golitho
Posted 3/14/2011 1:20 AM (GMT 0)
Thats what i was just about to ask you , What Dose ? also Don't be surprised if First time is mild and second or 3rd increases in Nausea, But again depends on Dose & your Tummy 
Posted 3/14/2011 1:55 AM (GMT 0)
I was wondering the same- what dose were you started on?
Hope you are feeling better by now- I wish you all the best!
Posted 3/14/2011 1:57 AM (GMT 0)
Hey everyone! smilewinkgrin Up from a nap and thought I would check to see how all is doing? I feel better than earlier. Every time I try to sleep, though, I feel like I am still partially awake. I don't know, just annoying.
I am on 2.5 and 6 pills a week. Rhuemy said he may back it down later but for now I need to stay at that along with the predisone and plaquenil. It's good to know that the nausea may be worse the next time. This time was only here and there. I keep getting hot, then cold. Blanket on, blanket off. Drank so much water it's up to the bathroom, then back to lay down, just start to doze and up to the bathroom. TMI(too much info? I know sorry blush )

I have had a panel of blood test, 2 different ones in the last 3 weeks. One by Rhuemy and the other by pr. dr. They didn't say anything about b12 just the thyroid, vit. d, and iron. All 3 not working properly. I have to call tomorrow so I will ask about the b12.

I hope tomorrow is good for all of you. I'm sure I will be napping on my lunch break. Take care and thanks! Heather shocked turn smhair
Posted 3/14/2011 2:26 AM (GMT 0)
gee 6 is a lot to start out with in my opinion but I'm no doctor. I started on just 3. How about Prilosec? Did he say it's an option to combat the tummy troubles? Did you take it on a full stomach?

Hang in there! Hope you find relief once the drug takes hold!
Posted 3/14/2011 8:03 AM (GMT 0)
so 2.5 x6 =15mg ? i was started on 10mg then 20 but only a short time as was throwing up so then dropped to 15 then 5 with Prednisone & Humira But trying to increse it again to 10mg as no more Humira ( my choice) Has He Given you the Folic Acid? that really Helps, oh also an ant acid like Mylanta in Morning.

 if you find it Too Yucky you can Drop it down a bit then slowly increase sometimes you can get more used to it that way

Posted 3/14/2011 12:45 PM (GMT 0)
How much folic acid are you taking?
Folic acid protects you from the nausia and other side effects of methotrexate-I had to up mine to 3 mgs after my first dose-never had side effects after that.
Posted 3/14/2011 1:54 PM (GMT 0)
That is a lot for the first dose.   You should be able to play around a bit with your dosage starting out, going down a couple of pills and then increasing gradually.  But it sounds like your doctor does it differently! However, if it is too much, don't hesitate to say so, call his nurse and tell them you need to decrease for a couple of weeks.  Also, try to get the Leucovorin script, it is amazing! If you are really sick to your tummy, they can give you something for the nausea, I have promethezine and while it makes me sleepy, it really works well.

Hang in there, and hope it gets better!!

Posted 3/17/2011 10:45 PM (GMT 0)
Hey Everyone,
I haven't been on in the last couple of days. Mostly because I have been so tired. I been going to sleep at 7:00(by accident) and my older kids have been helping out getting the younger ones to bed. Last night, I just laid on the couch..I wasn't even tired..or so i thought. I was out, I guess. Only woke to hearing my almost 17 year old tell the younger ones to let me rest and ask what they needed.
My stomach hasn't been nauseous but more of a feeling like I did to many sit up's?? confused I don't know if that makes any sense. Kind of like a raw feeling. Today though I have had a bunch of energy and feel pretty good. I have managed to go to work, give my kids baths, clean the house and am making bananna nut muffins. It might be because I'm excited. My husband is taking us to the smokey mountains for spring break and has rented a very nice cabin yeah
So to answer everyone. Yeah I still think 6 pills is a lot to start out with. I am taking 1mg of the folic acid. I don't know if it is helping or not. I have had severe pains in my hands this week and of course everything else hurts and work is blah with all the same issues. But even at work today I managed to get all my paperwork done, payroll, cook kung poa chicken and vegetables and rice for 500 kids, make all the toasted ham and cheese, and cook the pizza's, load my staff's coolers, run the register, clean the three comp. sinks and still feel ok. That made me feel good!! So I am very hopefull at this point. I am still worried that this next dose Saturday may end up being worse but if i could cross my fingers I would to hope it will be at least the same as this last time. Hope this finds you all well. Take care. Heather turn
Posted 3/17/2011 11:32 PM (GMT 0)
I agree 15mg is quite a big first dose. If you still don't feel good after your next dose, it may be worth a call to your rheumy and ask about your side effects. I know I couldn't tolerate it at first. I was dropped to 10mg and slowly built back up to 20mg. I was also on one dose of 5mg folic acid 24 hours after the mtx.

Maybe that would work better for you?

It does take a couple of months to work but it is a truely good med once it works and your body adjusts. Don't forget to drink as much water as you can especially on the day you take it. That seems to help with the nausea and side effects. I get headaches if I don't drink enough.

Unfortunately even on the meds we still have our good days and bad days. I'm generally good now but today have woken with sore knuckles and toes, its overcast, so maybe the weather has played apart or I may have just done too much yesterday? You neverreally know.

I've learned to enjoy my painfree moments and go walking when I can, sort f enjoy the moment to the full. Like you with your cooking. Get out there and enjoy your life as you can. I'm so over waiting.

We wait for meds to work, we wait for appts with rheumy's, we wait for new meds to be approved, we wait for things to get better. I'm just over it!

My little rant...best wishes, golitho

Posted 3/18/2011 8:38 PM (GMT 0)
Golitho,
idea I am so with you on the waiting. What sucks more is the waiting just to find out you have to hurry up and wait again..like for a new med or the blood work. Uhg rolleyes only to have a normal life again. I guess that is wishful thinking. I was wondering if the closer you got to having to take the med again if you noticed more energy. The last two days I feel like i have an abundant amount of energy. More than I have in a long time. I am def. hurting. My hands and knees for whatever reason just seem to be in full attack this week. Although it might be because i have had more energy, I have done more and worked them more. I even started noticing my hip kind of feels like it keeps popping out of the joint or something. Rant, vent, whatever. We have every right!
I have been drinking plenty of water, I appreciate the advice on that so much. My Rhuemy hadn't even mentioned it, that's kind of scary. I am hoping that tomorrows dose will not make me sick. We will see. I wanted a nice cold drink tonight after the day I had but know that's a no-no nono We will see though. Hope you have a good evening!! Heather
Posted 3/19/2011 2:11 AM (GMT 0)
Hi Hope you have a Lovely time on Holliday Relax, i Take 5mg Folic Acid Every Day Except the MTX Day.
Posted 3/19/2011 5:29 PM (GMT 0)
BadDay,
I have read a couple of post about not taking the folic acid on mthtrxt days. My Rhuemy had not mentioned it and i already took it today. Why can't i take it on those days? Should I wait and take my next dose of methotrexate tomorrow? I don't want to mess it up.
I think vacation will be wonderful. I am so excited. i just need to get away from all the craziness of life and just relax. I plan on staying in the hot tub, and whirpool bath. Along with sleeping in and playing pool with the kids. We r renting from a place called outrageous cabins in Gatlinburg. The cabin is called Almost Heaven. Doesn't that just scream serenity? I am at the countdown of 2 weeks til we go and I am just giddy turn yeah smilewinkgrin . I think it has helped me get through the week with less issues. Hope you are having a nice weekend. Heather
Posted 3/19/2011 11:41 PM (GMT 0)
Ooo your holiday sounds HEAVENLY!! Good for you! Sounds like it will be just what the doctor ordered!

When I was taking MTX I took folic acid every day, so I'll be interested in what responses you get.

Mel
Posted 3/20/2011 8:12 PM (GMT 0)
Meltdown,
Yes i am so excited to go. Hubby told me at first we couldn't afford a vacation this spring but I bugged him enough and he is worried about me. He has been spending so much more time with me since i started the med. It has been so nice. Then when he said never mind we need to get away and wanted to know if I was still feeling up to it..you would have had to pull me down from the rafters I was so excited smilewinkgrin turn yeah My kids are bouncing off the walls and my youngest has wrote a calendar on our dry erase board with a count down she checks off every day. I just hope i am not sick from the med at the time. Today is second dose and apart from being sick to my stomach and having to drink more water and take nausea med I actually feel ok. Fingers crossed it last til I come back smilewinkgrin
I called the pharmacist to ask about the folic acid but he said take it everyday. So maybe there's are for different reasons, i don't know. Guess we will have to wait and see.Take care!!Have a good one. Heather
Posted 3/20/2011 8:22 PM (GMT 0)
Hi- happy to hear your excitement for your vacation! It will be nice to sit in the hot tub and gaze at the starts. Glad it seems like the MTX maybe working. Try to push thru the side effects - it could take your body a little time to adjust. Keep drinking the water and my doctor has me take the folic acid every day too. 1 mg. He said anymore would negate the MTX but 1 mg. is perfect to stave off side effects.
Posted 3/20/2011 10:22 PM (GMT 0)
Oh, I'm so happy for you. Even if you're not feeling 100% I bet you'll still enjoy yourself.

I was on 1mg folic acid every day also.
Posted 3/21/2011 1:51 PM (GMT 0)
I'm the complete opposite with my MTX, mine tends to fizzle out a couple of days before, and I start to get my joint pain back, especially the day before my dose is due. I'm glad to hear you feel good instead!
Posted 3/21/2011 6:18 PM (GMT 0)
15mg is a reasonably high dose to start on, and some sickness is likely. Everyone has probably already said what I'll say, but it does improve with time, I used to inject 25mg weekly, and towards the end I didn't really notice it aside from the day after.

Hope everyones well (as can be expected!), not had much free time to come here recently :/

james
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