Feeling like the treatment is gonna kill me

Hi all, I'm brand new to the group although I had undiagnosed PSA for almost 20 years before I got a diagnosis. Rhumey has started me on Methotrexate 3 pills last week and 4 pills this week with 5 next week and every week after. The side effects are terrible. I take it on Weds. night after dinner then spend thurs into friday with a headache, sweating, and vomiting. It makes me so sick, then on friday the headache leaves and the vomiting stops but my stomach is still off. I am still very tired and sweating almost constantly. Each side effect lessens to the point where I can finally leave the house by sunday and by Weds. I am back to just pain again. Will this cycle lessen as I get used to the medication or should I stop it now? I have to babysit my 2 & 3 year old grandsons while their mother works, it is the only way she can work so she is taking thurs off,but it is hard to tend the babies while I feel so sick so much of the week.

Thanks for the input. :)

It does get better, many of us take the MTX by injection for fewer side effects. Also playing with your folic acid will also help.The docs usually start off at 1 mg, but with a phone call that can be changed easily up to 3 mg. The other big factor is drinking enough water. Its not uncommon to hear recommendations of 1.5 oz per pound of body weight.

Thanks for the response, I did call the doctor's office and was told to cut back to 7.5 mg if the 10 is giving me too much side effects. My folic acid is at 1mg daily and I even took it last night despite the constant vomiting. I'll call and ask about increasing the folic acid. As to water, if tea counts along with water I get plenty.

Lots of Tea is NOT a good idea. Its a diuretic. Diuretics are a big time NO NO they dramatically increase the dwell time of the MTX slowing down the excretion of the stuff. Lack of folate is what causes by far the largest amount of your SE. Diuretics further deplete it.

CUE Janetieu who is still on a quest for the perfect "Cuppa"

I started on MTX at 10 mg and moved now to 20 mg. I don't have massive side effects luckily BUT - thanks to heaps of advise from the guys on this forum I DO drink buckets of water for the dose day and the next and avoid coffee/tea. I find fruity herbals are perfectly yummy when I want a hot drink.

Good luck

Thanks, I guess I have to cut down my coffee consumption and switch to fruity herbals. I guess since I was able to quit smoking almost a year ago, it is logical that I pretty much quit coffee too. Normally I drink about two pots of coffee a day, but I do drink lots of water in between cups of coffee. I have found that while I was a sick as dog on Thurs after taking the 10 mg. Weds night I felt better friday and today than I did last week on those days. I guess it is trial and error until I find what works for me, but thank you all. I do appreciate the tips and hints.

My rheumy prescribed a med that helped with the side effects - I can't remember the name, but it staarts with an L, Lev... I couldn't handle methotrexate and had to stop taking it. Also, has your doc prescribe any anti nausea med?

I also had to stop MTX because the side effects outweighed the good if any. I literally felt it was slowly killing me as well:( I now take Sulfasalazine and although I do have side effects nothing compared to MTX, it was dreadful to have to mentally prepare for the weekly dose:( Hope you find the med that is tolerable for you! Good luck:))

My MTX side effects were similar - though perhaps not quite as severe - bad nausea instead of actual vomiting (though the headaches were wicked).

For me, time made a huge differnce to the SEs. Within 4 months I was taking what I understand is the equivalent of 8 pills, and as long as I took the required folic acid and kept my hydration well up, I took the MTX before bed on a Wednesday, and made sure I didn’t s cheduke any meetings before 10 on Thursday.

Having said all that, for me personally, it was completely ineffective. So once I started a treatment that worked, I dropped it like hot cakes:)

I had to stop taking MTX because of the side effects. Some people get use to it, but I didn't. Does your doc know about your sever side effects? Some people just can't take MTX.

Leucovorin Calcium is a pill that helps with the side effects of Methotrexate. You may want to ask your doc about it. Good luck and hope you will be feeling better soon!

Hi, It can get better but I found it a slow process. I'm on 20mg MTX with 5mg folate acid the following day. My doctor also prescribed Pramin 10mg (metoclopramide tablets) which helps significantly with fighting the nausea. Like tntlamb, drinking lots of water works wonders. Don't give up under any circumstances as the sooner you start and stay on your treatment plan, the better position you are in.

Everyone has different side effects on MTX. If I vomited or felt nauseas at all I'd be off it as I hate vomiting and only have 5 times in my life. I get tired 2 days after taking 5 pills and have brain fog, hair loss. Tried injectable; my choice as pills not working well. Took myself off injection after lessening dose as it knocked me down worse and more hair loss and worsened skin psoriasis?. Back on pills, and this time it's tiring me more compared to before. Suffering is not a way to live with med. side effects. Do tell your Dr. when you have side effects you can't tolerate. I also take 5mg Folic Acid each day less of MTX. EX: 5mg MTX, 4 days of folic acid. Good luck.

Hi Mariellenl! I'm with Meri-never throw up and couldn't tolerate anything that caused vomiting. (I'm 60 and haven't thrown up since I was 15!) --there's another one of my fears revealed, guys!

I'd start pushing for a biologic if I were you. I was worried about SEs from them--that was a big deterrent for me-but no SEs so far! I'm happy my insurance approved the Enbrel without first taking a DMARD because I'm pretty sure my hyper-sensitive system would have had a bad reaction, too.

Good luck--I hope you're feeling better today!!

hi grandma J, I did just that and my rhuemy has put me on Humera, but I haven't started it yet because I have to figure out the financial piece. The stuff is 2500.00 a month and my co pay is 600.00 a month (1/2 my income) so I am working to get that cost reduced.

Grandma J said:

Hi Mariellenl! I'm with Meri-never throw up and couldn't tolerate anything that caused vomiting. (I'm 60 and haven't thrown up since I was 15!) --there's another one of my fears revealed, guys!

I'd start pushing for a biologic if I were you. I was worried about SEs from them--that was a big deterrent for me-but no SEs so far! I'm happy my insurance approved the Enbrel without first taking a DMARD because I'm pretty sure my hyper-sensitive system would have had a bad reaction, too.

Good luck--I hope you're feeling better today!!

I don't know of anybody paying their whole copay- seriously.....

Contact the company assistance program for your drug. The programs are NOT need based but if there is a need its even better.

http://discussion.livingwithpsoriaticarthritis.org/forum/topics/copay-assistance-cards

I'm sorry mtx is being so rough on you. It does sound like you need a lower dose. If that doesn't help maybe mtx isn't the thing for you. I couldn't stay on it due to side effects either. If it were only so simple that one medication helped all of us and we could all tolerate it. Life would be so much easier. As mentioned, folic acid is important. You can always get extra from orange juice.

I really hope things are looking up.

As long as your copay isn’t more than a third, the copay assuming card will pick up the tab. Just Google it. This is assuming you do not have nedicade ect…

I'm starting my 8th week of 15mg Meth, with 1mg folate acid 6 days a week. At first I was so sick, no vomiting, just nausea and fatigue, cramps etc. And massive dehydration. So, thank you for this info - I thought it was because of a heat wave we're having where I live. Yes, drink masses of water, gingerale..it will get better, slowly but surely. And make sure you eat something when you take the Meth. I've also heard scotch mints can be helpful. Good luck, give it a good try and hope it works for you.