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Ready to give up on MTX

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Rheumatoid Arthritis
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Posted 8/7/2013 2:55 PM (GMT 0)
Starting my 6th week of MTX today and I am ready to toss it in the trash. I am taking it a day early because of a weekend camping trip and 5 hour drive, which the dr said would be ok. I am taking 12.5 mg sub q and almost 2 mg of folic acid daily. I have Zofran for the nausea and Fioricet for the headaches as well. Last week I was so sick, I couldnt even open my eyes for 48 hours without vomiting. My stomach hurts so much from vomiting/ dry heaving.

I have occasionally seen very very minimal improvements with morning swelling/ stiffness, no decrease in pain levels at all. I would have hoped that the side effects would be getting better and I would have seen more improvement by now. I know we can go up in dose or add other things, not sure what to think. I was supposed to have an appointment next week but had to change it till the end of the month due to an inservice presentation I am doing at work, so I have another couple weeks to try it. Is 8 weeks to soon to make a change if things arent working?

Does everyone else feel so lost and frustrated in the beginning? I know its not instant, but when you add the side effects to the regular pain, I sort of wonder why I am doing this.
Posted 8/8/2013 8:01 AM (GMT 0)
Hi

 I know it can be very hard starting new drugs heck I did same thing I spent my nights throwing up and my days feeling cr*p But then my Rheumy increased the Folic Acid I now take 5mg Daily he then Split the Methotrexate dose instead of taking the full amount on one day I take half on Monday then other half on Wednesday this made All the difference for a little while I still got nausea but it was controllable but as time went on and if I ate a good meal with the MTX it has gotten so I don't need Anti Nausea pills very much at all

So Call your Rheumy there is Always Some way they can help

Posted 8/12/2013 11:46 PM (GMT 0)
Hi Angel,

Try to hang in there. It takes 2 months for mtx to take effect. I remembergoing off it in my first attempt at taking it. I felt so ill on it and everyone said I looked grey, then after afew months break I started it again at a lower dose and slowly built up to my full dose of 20mg per week. Now I adore this med.

I have very little swelling compared to what I was like before and if I go off it to fight infections I swell up terribly so it has had a huge impact on me.

Plus I can now tolerate it, have very few side effects. A bit of a headache the day I take it. Try to dring large amounts of water to help your body cope on the day you take the tablets, see if that helps at all. Or ask your rheumy about lowering the dose and rebuilding slowly back to where they want you to be.

Hopefully you'll feel the effects soon.

best wishes, golitho

Posted 8/15/2013 1:21 PM (GMT 0)
Its so hard to be patient. Sometimes my swelling isnt as bad as other days but pain levels are still high. My pain management dr did start me on fioricet for the headaches, not daily but just to be used that first day or so after I take the MTX that is really rough. She doesnt want to chase side effects with meds, which I understand. The small daily headache is fine, its just that first 24-48 hours that are an issue. I have been going thru alot of the zofran though, I need to see if I can get that increased. Right now I get 30 per month but can refill every 10 days if needed. Since the copay is $7 for 30,60, 90 or 120 I might as well get what I need for 1 copay. If it lasts me for more than the month than thats less expensive for me,lol.

I go back to work on Monday and I have no clue how I will manage. Thats in general, not just because of the med. side effects. My hubby just wants me to quit, but then were will the money come from. My meds are over $200 per month just for the copays, if I lose my insurance my meds would be about $8000 per month if I stayed on everything. We have been considering applying for LTD thru my employer which would give me a small income, I highly doubt I would qualify for SSD at this point. Then it would save on daycare, but I would need to pay towards health insurance (I supply for the family). I would likely break even, but then what about my car payment,lol. Not sure hubby can make up the difference.

It seems like it is always something, nothing is every simple,lol.
Posted 8/27/2013 8:10 PM (GMT 0)
Had my follow up today and the dr agrees that MTX is not for me. This last few days was tough. Ater 9 weeks the side effects are not letting up enough. Even though we are using the injections I was still vomiting for 2 days afterwards. I think I am getting toned abs from all the dry heaving, lol.

So now its on to Humira. Just need to tackle the insurance company, she seems to think they will accept it on the first try due to my side effects from the MTX and GI history.

Hoping for better luck this time.
Posted 8/28/2013 6:48 AM (GMT 0)
Well, I'm glad that you are getting off the MTX since it doesn't agree with you. The first time I tried it in my 20's, it worked for me but not these last 7 years, in my 50's. I wasn't vomiting(poor you) but I did loose a lot of hair. I finally got most of my hair back after 4 months off of MTX(and Rituxan). I am still taking the Folic Acid though.

Yes, your Insurance should allow you to use the Humira since you had trouble with the MTX even though the MTX is normally used with the biologic meds except for Actemra.

I hope that you will find the right combination of meds that works for you. Also good luck with your insurance. Hopefully no battles there.
Posted 8/29/2013 3:28 PM (GMT 0)
I am so sorry you were having so much trouble with Mtx. The first time I took it, it didn't bother me at all as far as side effects, except for a l of hair loss. Went off of it when I lost my job and tried it again a few years later and had the worst side effects! Had to go to the injections and even then, I would still get nauseated at times. Good luck with the Humira!
Posted 8/31/2013 12:55 PM (GMT 0)
I switched over to the Humira and the dr feels this should be much better with the side effects. She even mentioned that it tends to give people energy, I would love that!

What can you expect when you transition from one to another? I took my MTX on a Thursday, by the following Wednesday I was back to being swollen. Today I am poofed up horribly, my hands and wrists look like a chubby infants,and I cant bend much at all, lol. Even my ankles and toes are affected. I cant deny that the MTX was doing its job, didnt realize how much it helped in that area till today. Just couldnt be dry heaving for days on end. I took the Humira Friday(yesterday), how long does it take for that one to kick in typically?
Posted 9/2/2013 1:46 PM (GMT 0)
It is really unbelievable how much swelling and pain I have gotten since Wednesday. Either the MTX was working so great for the RA symptoms and this is just the transition, or my body doesnt like the Humira. Hoping for the first of course.

Every joint in my body is screaming and swollen. I havent really had this much widespread pain since June. My rings are causing increased pain. I need to get those off ASAP. I am thrilled that I am not vomiting but this is tough. I ran out of my muscle relaxer last night and cant pick it up till tomorrow. Thats what I get for not filling it before I ran out. Its a 90 pill supply that I can use 3 times a day but the last time I filled was the end of June. I usually take it 1 time per day, sometimes 2.

I guess I just need to get up and start moving!
Posted 9/3/2013 3:15 PM (GMT 0)
It can take Humira 3-6 months to see any results. For me, I felt the results the first week. Then, after a year it stopped working for me. I am now on Xeljanz (a week now) and hoping for good results. Good luck to you with the Humira!
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