methotrexate & side effects
Up to Traditional Meds and Side Effects
I took methotrxate for 5 weeks (3 pills once a week). I felt awful. I slept away most of the 1st week , expect when I was at work. Then started the mouth sores, headaches and stomach aches. after the 5th week, pains still there the doctor's office said I could stop. Then I had my Rhuematologist appt & he said I could try the shots. I hate shots so I asked what else was available, so I am now on Arava pills. 10 mg pill once a day. So far 1 week in, no major side effects, Hope it continues. Anyone on Arava?
Candi,
There are a few people on Arava on the site, not sure whom. I am on the MTX 6 pills a week, plus 50mg Enbrel shot 1x week, 600mg of Celebrex daily and 30mg of Cymbalta daily. This doesn't include all the Folic Acid, Magnesium and other over the counter that do not inter act with the scripts.
I am so glad you are finding some releif from the Arava, it is very common if one doesn't work another should. Are you on anything besides the Arava?
Hi Tessa,
I am on plaquenil (over 1 year) and mobic (about 6 months) plus meds for high blood pressure (aldactone, HCTZ and Toprol XL) - I also have osteoarthritis and Fibromyalgia along with the RA.
I have tried vioxx - worked great until I got the jitters and racing heart - I was on it over 3 years. Then tired celebrex, bextra - same reactions. also tried neurontin, cymbalta, pamelor, etc. If it didn't cause heart palpitations, it caused headaches or raised my blood sugar too high. Also tried sulfasalizine - hurt my stomach. tried a prednisone thingy, raised my blood sugar and made me sick.
I was so happy that the plaquenil and mobic work (to some degree) and don't make me sick.
I went to my hand surgeon today, because the pain in my thubs were getting unbearable. Instant xrays shows OA in the joints along with bone spurs. I got a nifty little splint for my thumb (worse hand first). haven't had as much pain Can't wait to go to work tomorrow- I'm a preschool teacher of 3 year olds.
Hi Candi,
I've been on mtx for more than a decade and recently switched to the injectible. Honestly, I will never go back to the pills. No fatigue, no stomach issues. The shots are virtually painless and it's a breeze once you get past the initial nervousness.
Were you also taking a folic acid prescription with your mtx? This is suppposed to counteract many of the unpleasant side effects.
Hang in there!
Hi Carolan,
Yes I was taking folic acid. It didn't help the side effects OR would it have been much worse without the folic acid.
It's been about a week on Arava & no major complaints yet. I feel a little less stiff, so I continue & wait. Hope it works, I really don't like shots.
I can't believe you were on mtx pills for 10 years. 5 weeks was more than I could handle.
Previously Carolan Ivey wrote:
Hi Candi,
I've been on mtx for more than a decade and recently switched to the injectible. Honestly, I will never go back to the pills. No fatigue, no stomach issues. The shots are virtually painless and it's a breeze once you get past the initial nervousness.
Were you also taking a folic acid prescription with your mtx? This is suppposed to counteract many of the unpleasant side effects.
Hang in there!
I'm sorry the methotrexate was so rough for you!! that is good that the arava is working though.
I second what Carolan said- I've been on mtx for about 7 years now. I HATED the pills. I would have an entire day of the week where I couldn't do much and would be exhausted, I'd throw up at the drop of a hat. Ugh! I had to learn to do the injections, and at first it was scary, but it is absolutely worth it. It works better, there are no stomach effects, its all good. (or as good as mtx can get!)
Ladies, I think after being on MTX pills for 6 Months and being so fatigued I am going to ask Rheumy in December to switch me to the injections to see if that will help. Because with the Levoxal for Hypo Thyroid, also causing me to be tired the less pills that have that side effect maybe I can be more useful during the week and weekends.
Candi,
I'm sorry you had such a bad reaction! The truth is, there's no one size fits all when it comes to treating autoimmune disorders. The good news is, there's an increasingly wide variety of meds to try and it sounds like you've found one for you!
Tessa, overall I tolerated the pills pretty well but even 10-15 years on I'd sometimes get hit with the nausea or fatigue at odd times. My rheumie sayst the shots are more effective per dose because it doesn't have to work its way through your digestive tract. Now that I've added the Enbrel, I've been able to cut back the mtx by 25 percent. Maybe I'll eventually be able to cut it in half!
Carolyn,
I see the Rheumy in December so i am going to ask his opinion. I know at one point he didn't want to give me the injections not sure his thoughts on it though. He did mention that if I haven't seen an improvement with the Enbrel he might increase my MTX because I am still only on 15mg per week. (not sure if that is high or not anymore, been hearing there are folks on more than that per week).
I just don't want to be exhausted by 7PM every night. It's depressing.
Hi Candi
Sorry it's been so hard! My son tolerates his MTX (25mg once a week) well with folic acid, but does have to take it at night or has nausea. He was tired for the 1st month and then it got better. HIs friend that he met a children' s hospital only lasted a month on it and then went to the injectable. Eric does not want to inject it as he is already doing enbrel and says that is enough! Seems like everyone is different- I hope you dind something that works for you!
hey Jennifer- just so your son knows, if he already does Enbrel injections, the mtx injections will be a cakewalk! they really hurt a lot less.
Also, he may be excited about the thread we have somewhere on here about how eating hard candy while taking Enbrel helps with the sting!
I second what kate said - mtx shots are a breeze compared to Enbrel!
The hard candy trick really helps. What I've also discovered is it stings a lot less if A) I don't swab with alcohol (just out of the shower is clean enough) and B) if I don't hesitate before inserting the needle. The less I think about it, the better. I've developed a routine where I put the unwrapped candy and the syringe out on the bathroom counter to get to room temp while I'm showering. I hop out, dry off, pop in the candy, whip off the syringe cap and inject without stopping to prepare myself mentally for the sting. It goes a lot faster and hurts a lot less. 
Tessa, at least for me, my rheumie sait 20 mg of oral mtx was the upper limit. So we switched me to injectible because she said I'll get better benefit from the same dose. I believe it worked, but we added Enbrel to see how much better I could get. We're already seeing a difference in the low-grade inflammation that was hanging on, but for me the improvement is subtle and won't become clear until at least a year has passed without a major flare. (keeping fingers crossed!)
Hi everyone! I tried mtx only but not much improvement. Then anti-inflammatory only, same story. Then Humira alone, same story. BUT, when all three were combined...dare I say it out loud? I think it is working!!!!! I'm only 10 mtx pills/wk, Mobic, and Humira. I am a little scared to say it is working as I don't want to junx myself.
I am so happy the combination is working for folks, it is so great to hear. As soon as I am able to start my meds up again and I am switching insurance companies in January I will be asking Rheumy for the MTX injections versus the orals. Since I have to get all new scripts to change the insurance company and mail order pharmacy.
Tess
Hi all,
I have been taking mtx for over 6 yrs was on the shots and when I started on the humira dr switched me to pills I did have some stomach upset but with time that has pretty much stopped. But since I was off (about 2 months) I have been having horrible stomach pains. I am not sure if I should suggest injections again or just try to work thru the pains for a while. Dr cut my dose down also. I was taking 12 pills on Sat nights and now he started me back on 8. If anything you would think that I should be able to tolerate it because the dose is lower. Any ideas??
Kelly
Hey Guys - I could've sworn we discussed MTX and hair loss on here before, and all agreed that it was a major issue, even w/ the leucovorin. But I was just on their website, and read that supposedly only 5% experience hair loss! HA - tell that to my hairdresser who keeps having to take me up 2 inches each time I see her!
Am I alone on this? How bad is everyone's hair loss? And yes, I am on the injectable too. I stay around 6 right now, b/c I find if I go higher, my hair literally falls out in clumps and I get horrible mouths sores.
- Kati
I totally lost hair, althought it mainly happened in the beginning. Now my hair grows normally but its just thinner than it used to be. Of course, it used to be ridiculously thick so no one believes me. I used to have a satin/sateen (whatever it was it was slippery) pillowcase and would only use soft ponytail holders and all of that. Now I don't do it as much, but I know that if I get a little knot in my hair or something and I try to comb it out, usually all the hair attached to it pulls out (I realize that probably sounds gross).
The short answer is, I still have hair loss but it has slowed down a lot. The mouth sores also have slowed down- I did increase my folic acid though and thats what has helped with those.
kate
(its funny that this is the post I just saw, I'm sitting here having injected my mtx about 3 hours ago... I am going to completely crash very shortly, the fatigue has just hit me!)
Hi,
I've read many times about all the side effects that a lot of you suffer whilst taking MTX. What I do find interesting is the fact that a lot of you are only prescribed 5mg a week of Folic Acid. In the UK most people are prescribed 5mg each day except the MTX day.
I have been taking MTX for around a year and have always taken 5mg of Folic Acid every day.
Dozey.
Dozey - I'm prescribed 5 mg once a week, but I'm with you...I take an additional OTC supplement every day except MTX day. (I also don't take my regular multivitamin on MTX day)
Kati,
I experienced a bit of hair loss though mine is a lot like Kate's where my hair is so thick you can't tell only the hair dresser, my brush and I really know. The hubby and kids say I shed as much as my cat now though!!
I still believe that taking the Folic Acid has helped tremendously with the side effects of the MTX except the fatigue. For that I now take magnesium though it doesn't make it totally go away just not taking 12 hours to recoop from it.
After reviewing some of this with my Doctor and HAIRDRESSER... we agreed to only wash my hair every other day and to ensure i used a good amount of conditioner and rub my scalp with it and rinse well. I now only dry my hair with a blowdryer once in a great while.
BTW my hair is down to the middle of my back so it is fairly long. As kate described if i get a knot (birds nest) the entire clump or strain will come out from the root immediately. So I sleep with it tied up in a soft scrunch to prevent the extra knots, though you need to be careful because sleeping with your hair up too tight can cause it to remove frm the scalp also.
I know it's a catch 22. Good luck.
Tess, you're so smart. It never even occured to me to discuss it with my hairdresser-- DOH! great idea.
FWIW, I took my son to get his hair cut yesterday (thick, curly hair, SUCH a waste on a boy!) and the lady cutting his hair said she herself uses Nioxin products for her fine/thin hair. Between the Nioxin and coloring, which plumps up the hair shafts, her hair looks really good. I may have to try it. I do highlight my hair, which makes it feel thicker.
Carolan,
I started the Nioxin last week. Its too early to really tell... I'll keep everyone posted. I lost a TON of hair. I had enormously thick hair too, but it really came out, in clumps. I recently went to a bob cut, and I think I hate it, so now I'm trying to build my hair back up, so I can grow it a bit longer again.
Mostly I wear it in an updo these days. My thinking is that its getting ready to be summer anyway. Maybe if I wear it up for six months, it will grow while I'm not looking. 
Oh, sorry! Nioxin is a line of products that includes shampoo, conditioner and a leave-in serum that are supposed to plump up the hair shafts. Many salons carry it.
Carolan,
I think I will also check this out, they don't sell it at my salon, but it is available in my area.
Correction on the website. www.nioxin.com
Thanks for the info...
Tess
Hey Guys -
Has this happened to anyone? You take your MTX injection, only to realize that you have no leucovorin and that by the time you fill the prescription, you will be outside of your 8 hour window?
I just downed folic acid instead. Was that right to do?
- Kati
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