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Introduction - not long diagnosed, just started on Methotrexate

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Rheumatoid Arthritis
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Posted 1/22/2012 3:55 PM (GMT 0)
Hi there, I've been reading through this forum this afternoon and thought it was worth signing up and introducing myself.

I was diagnosed with RA just before Christmas after almost two years of gradually increasing muscle pain in my legs and shoulders. A locum doctor misdiagnosed me with polymyalgia rheumatica but luckily my regular GP is very thorough and didn't think this was likely so started giving me regular blood tests to build up a profile. Then my index finger and knuckle on my right hand swelled up and got painful and he sent me to the rheumatologist, who diagnosed me with RA. Since then my left elbow has become quite painful too.

I started the methotrexate last week. I didn't notice any side effects from the first dose but a few hours after the second I felt a little dizzy and I've been light-headed since. Today, three days after my second dose, I'm feeling tired and groggy and a bit nauseous as well. I was getting quite worried but from what I've been reading my side-effects have been pretty mild so far compared to a lot of people and may just be part of an adjustment period to the drugs. I've also been feeling better since finding that out - mental attitude is clearly going to be a big factor in dealing with this, so I'm going to try not to worry and just see how the next few weeks go. The rheumatologist does seem hopeful that we've caught it very early, so I'm just hoping the methotrexate works for me.

Thanks for reading...just getting all this down in writing has been a big help in sorting my thoughts out.

All the best
David
Posted 1/22/2012 7:37 PM (GMT 0)
Are you taking the pills? if so maybe the self injectible Methotrexate
would be better for you....and the injections have fewer side effects...
something to consider and make sure your only doing this weekly
such as every Tuesday or every Thursday (examples).

Many well wishes to you and it might take a few weeks for the methotrexate to
get into your system and build up...but hope your feeling better soon...
Posted 1/22/2012 8:51 PM (GMT 0)
Hi Chartreux, yeah I'm on the pills, I take them on Thursday evening and then Folic Acid on Sunday. I'm feeling a fair bit better tonight, the nausea turned into a stomach ache over the course of the afternoon and that seems to be gone now, I'm guessing the Folic Acid helped. I suppose all I can do now is see how I feel for the rest of the week and how I react to the next dose.

Thanks
David
Posted 1/22/2012 10:32 PM (GMT 0)
Methotrexate pills do cause a lot of stomach issues, so if it continues,
ask about doing the injection, it's not hard to do the injections, you do those
in your thigh, stomach or (arm if some one helps you...) and once you've
done a few it get easier...and the medicine is about $10. here in the USA
for the injection...just make sure to get the smallest syringes...and
it doesn't give you as much stomach problems...might be worth asking your
RA doctor about and it's also once a week...I take the folic acid 4 hours before doing
the Methotrexate (MTX) medicine as it helps....and many well wishes to you....

Post Edited (Chartreux) : 1/23/2012 8:37:46 AM (GMT-7)

Posted 1/22/2012 11:11 PM (GMT 0)
Make sure labs are done often (should be @ 1x/month I believe). I got relief from Mtx but liver enzymes went sky-high! Wish I could've stayed on it!
Posted 1/23/2012 4:04 PM (GMT 0)
Thanks for the advice Chartreux, I'll bear it in mind.

Angelina, I'm getting blood tests once a week at the moment, I think they were meant to be fortnightly but as I said, my doctor is extremely thorough :)

Thanks
David
Posted 1/23/2012 6:49 PM (GMT 0)
Welcome David!

A bit of advice- take your pills after you have eaten a full meal. Also be sure to drink plenty of water, especially on your MTX day. I drink at least 48 oz per day. (I no longer take MTX but got into this good habit when I was.) It helps flush your liver.

I never had stomach issues with MTX but some people do have an adjustment period.

I wish you all the best.

Posted 1/23/2012 8:01 PM (GMT 0)
hi david, and welcome to the forum. i haven't posted in awhile, but i was and am very grateful for finding this website. i was diagnosed with polymyositis in nov/09. after a year and half on prednisone 60mg. i was finally put on methotrexate. i too am on the pills. i never knew there is an injectable type. perhaps since i'm on medical and it's not offered to low income???? something i'd like to ask my dr.. i'll be seeing him on monday???? i was told to take folic acid daily since the methotrexate washes out the folic so i've been supplementing from the very beginning/ another question for the doc?????

i've come a long way since 09. my cpk's were at 11,000 at the hieght of my disease. now down to 94.

no longer on steroid. my metho has been tapering down and very anxious because i get blood work done this week. extremely nervous because i haven't been taking care of myself like i should. i've been very depressed lately, more so than ever. so i've been self medicating with too many drinks. just want to get out of my head, and going to local bar, playing darts and listening to loud music, laughter and people. well it helps me escape my own brain.

but of course at the end of the day or night still have to come to reality and here i am.

i haven't been feeling good at all. i put on a front because i can't handle telling family or friends the truth. and i don't want the beat down about my life style.

i've been waking up at night with the worst muscle cramps i've ever had in my life. they start from my ankle and work thier way up to my inner thigh. some nites they are so painful i'm almost to the point of 911. i can say the pain level is comparable to child birth. and that's gnarly.

i've never had the f...it attitude. but now i just get through one day and try to have the most fun inspite i can, because i feel my body slipping away. something i have a hard time explaining to family and friends.

well enuf of that. actually i just wanted to say i eat alot more and drink alot, and i mean alot of water the day of and after methotrexate. it seems to help me with the nasuea and stomache pain. it helped me with my polymyositis. so just wanted to say good luck. feel better and  have a nice day.

 

Posted 1/24/2012 2:01 PM (GMT 0)
Hi wearyRAsufferer, thanks for the advice. I have been taking the pills with food and I did notice I was feeling quite dry for a day or so after my dose. I've also had a pretty bad headache for the last couple of days, at first I assumed it was a tension headache from spending too much time on the computer but I think it may be a side-effect too as I woke up with it this morning. As I say, I can only hope this is just the adjustment period and things will get better soon.

tryn2gtbtr, it sounds like you're having a really rough time. It sounds like there's a few things there you need to raise with your doctor, about the way you're feeling as well as the drugs. It might help just to be able to talk about to someone if you can't with your family. Good luck with the appointment and thanks for the hints.
Posted 1/24/2012 3:08 PM (GMT 0)
Dear tryn2gtbtr,

It sounds as though you may be suffering from low potassium. Has that been checked along with your other regular blood work panels? If not, please, ask them to check for this too. Until then, bananas and potatoes are high in potassium and it only takes a few days to start feeling relief from the extra potassium they provide. If by any chance that is not the problem, there is no harm done. (p.s. alcohol depletes the body of potassium)

Hope this helps till you get in to see the doc.

take care,
Posted 1/24/2012 3:12 PM (GMT 0)
Davidinscotland,

Just wanted to take time to welcome you to healing well. It sounds as though you have already received some good advice from others. I really do not have anything extra I can add.

I do hope that you will continue to visit us.

Take care,
Posted 1/24/2012 7:25 PM (GMT 0)
Thanks MsCrowbar :)

I actually went to the doctor to talk about the side effects today and he said while they might be the methotrexate the dizziness is unusual and it's a possibility I also have an ear infection, so we're going to see if that clears up. Nothing's ever simple!
Posted 1/25/2012 12:59 AM (GMT 0)
Awe, David a ear infection can really hurt, so many well wishes for a speedy recovery from that
ear infection...you have to be careful around other people as the Methotrexate will lower your
immunity and it makes it easier to get sick, and just take cautions when you go out so that
you can stay healthy...hope your feeling better soon...and no nothing ever seems easy anymore, eh....
May you get more good days ahead...
Posted 1/25/2012 2:39 PM (GMT 0)
mscrobar???

thanx for the advice on the potassium. actually got some supplements last week. usually eat one to two bananas a day, but since the holidays, i've been slacking with my diet.

i'll ask my doc about my levels. i know i don't have it as bad off as many others do in this world. usually my attitude is a little more upbeat. been just feeling really frustrated, tired of medicene, doctors, blood work, blah blah blah.... it'll never end. stomach hurts from the meds, muscles always hurt, so worried about going back into stage one. don't want to be where i'm at. can't move yet, it justs sucks.... fear of the unknown/ will i be healthy enough to take care of my mom.

she's a hand full. plus her 100 lb. dog. she treats me like i'm 2 yrs. old. i walk into the house and my throat and chest close up. i can't breathe. my anxiety is thru the ruff. wish i could put my sneakers on and run run run.....

 

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