Methotrexate S@cks

[Carla]

Alright I will admit it, I'm a little cranky today. I hate this MTX business. My freaking hair is falling out, I can't even dye it for fear it will break off (oh, how vain amd I LOL). I'm so (word not entered) tired I could scream. And worst of all is that the doc has given me the impression that this is permanant (9 refills). MEH as Katie would say.

Speaking of Katie, ya know what's really bad is that I've been named Godmother to Katie's (from this site) "baby to be" Molly and I can't attend the baby shower this
Sunday. How lame is that.

Anyway, back to the MTX. Headache, nausea, vomiting, exhausted, name it and it's slapping me in the face. I will admit that these things are getting better every day but COME ON. NO sunshine, what the blazes is this. I mean with SLE I'v always been careful but, NO sunshine. Cripes, I have NO Vitamin D in my system now. GRRRRR

I will also admit that, obviously it has done something good because I can actually type now. My hands, wrists, ankles no longer look like balloon animals (ya know when the emergency room people blow up the gloves for little kids, yeah, think that with pain) and I can lift a coffee cup (Yeah Coffee).

So, tell me, my friends, who's been on this "stuff" for an extended period. Is it still helping you. Do you get more infections, what precautions do you take? Anything to keep the side effects at bay? I need answers from you guys not the "doctor websites" where not one of them has ever been through it.

Love you all and hope your feeling good today
Carla

[Kiara]

Hey Carla!! I so know what your going through!! Last night I noticed that as I passed my hand through my hair, it was falling out, not just 2 or 3 hairs but like 10!!! I began to cry!! and it keeps falling!!! the effects are bad, but my rheumy is giving me Folic acid, which is said to help wth side effects; and I guess its true! I think that the sun part, well...... I'm used to it; I cant even stand in the sun for 10 mints, rash begins to take place all over, and get dizzy, ect. I also noticed that I get sick easier, I got an infection in my ear cartilage piercing, which I got before I knew I was sick! and UTI too!! but i can say it has helped alot! as you said, I can type wth less pain!! weeee!!
Hope this helps!!! xoxoxox, KIA

[Carla]

Hey there Kiara, Sorry to hear you have to take this crap too. Last night was my night to swallow the "8 pills of hair death" Definitely sorry about the UTI. I called today and whined that I'm tired of being tired and by the time I get my energy back it's time to take the dose again ergggg. So he's called me in something called Leucovorin...called it in immediately (what doc does that) and said take it immediately, so maybe this will help me get some energy back.

[Dawn]

I know what you are going through. I hope that your doctor has given you Folic Acid, it will help ease the side effects of MTX. Once your flare has eased up, they may take you off the MTX. I know it is the worst the day after taking the mtx...I would not even get out of bed and kept a tub next to in fear of not making it the bowl. They took me off of it, due to seizures were coming about with me, only that I have a strong history of them, but not three in a month...that was rough...I was not even able to drive for several months either. The hair will grow back, but I know what you mean when it is in your hands and you are trying not to let it clog your shower and to see it in the garbage is even harder, but you need have a good laugh...it helps...I wished I had a magic wand and was able to wisk this all from us...but till I am able to do this, I laugh, it does help.

Be good to yourself...gigle a bit!

Hugs,
Dawn

[Tricia Rebish]

hey my name is tricia im new ive been on mythatrexate for 17 years and im 28 and i use it for arthritis and i was loosing my hair at first but all ive been using is folic acid thats what my doctor gave me and ive had several ive had ra since i was 5 and yes it does help i notice when i skip a week or two i cant move at all.

[Carla]

OMG, honey I'm so sorry to hear you've been going through this crap since you were little. The folic acid seems to be doing the trick with the hair and the tiredness (is that even a word? (LOL). Well, welcome to Butterflies and thank you for responding to my rant. You'll find I do a lot of whining and then someone comes along and tells me they've been going through this since age 5 and I feel like a schmuck for being such a woosy about everything. My husband is always telling me "it could be worse", he's right I should remember that more often.
Carla

[Leslie]

I wouldn't go on Methotrexate for years. I kept saying no no no. After trying many other drugs that did not work I finally gave in, took it and it saved me. I never had an issue with my hair falling out from the drug. In fact it stopped my hair from falling out. I also took folic acid to help with the side effects. No sunshine? Again, I never had an issue with that either. I love the beach and I refuse to ever give that up. There is so much I have had to give up because of this disease...hell no, I love my sunshine! :) Every person's body reacts different 2 medications. Not everyone is going to have the same side effects. I wouldn't say NO sunshine, yet. You may be one of the lucky ones and not have an issue. Give it time. It took a year for me to really start feeling more like my old self. I started feeling better before that, but I remember at a year how far I had come. If it has more negatives than positives methotrexate might not be the drug 4 u.
I would give my right arm to be back on it right now, but I do not have medical insurance and have not been able to afford doctors visits, labs and medications for a few years.
Good luck.
Smiles, Leslie

[Kiara]

Hey!! well guys hope ur doing ok!!! Well its true, not every body reacts the same way to meds. I didnt mention, but I have I cant be in the sun, so even though the med says so, I'm used to it! Its tough at first, I got tired of feeling tired right after injecting it (I cant drink the pills, I throw up), but then I realized and said :HEY, I WILL LOOSE 2 DAYS AND A HALF, BUT I WILL BE ABLE TO BE MORE ACTIVE 5 DAYS!!! so i guess thats what has helped me the most, oh and my rheumy!! she is a great dr!!
take care guys, luv ya! xoxox

[Carla]

Hey Ladies, thank you all. I think I'm through the worst of it. Hair has stopped coming out in clumps...it's still growing in from my last bout with MTX. The best thing is that my hands are not swollem to balloon size anymore...well, sometimes first thing in the morning, but it seems to go away quickly. The nausea and vomiting have stopped completely. I'm more afraid of the predinsone right now and think I should talk to him about weaning off that and seeing what happens. My bones are already a mess, I don't want to stay on all these drugs that are proven to make it worse.
Again thank you all.
Love, Carla