Methotrexate scares me | Arthritis Information

 

I had my first rheumatologist appointment yesterday. He gave me a shot in my behind of cortisone and gave me a prescription for injectable methotrexate. He also gave me a lot of reading to do on this drug. The more I read, the more I don't want to take it! The possible side affects sound so scary that I think I'd rather suffer with RA. I haven't filled the prescription yet and am not sure that I will.

The cortisone worked very nicely for me. Not all the pain is gone but I went from totally non functional and feeling like crap to actually doing laundry, my hair and other exciting things today.

I just don't know about the methotrexate. I'm already taking plaquinel isn't that going to be enough? I read about all the different drugs that many of you take together and I begin to wonder why I'm being such a baby...

Any words of wisdom would be very much appreciated.

I'm with you!  I too take plaq. and am terrified that I will have to go to methotrexate.Hi Kelly, my experience with MTX was that it worked very well, for 6 weeks then I become resistant to it with terrible chest and sinus infections, I tried it multiple times after stopping it for a break and antibiotics etc bu to no avail, so I can not tolerate it.

I understand your fears as when I read the info, i panicked and phoned my rheumatologist and told him I wasn't taking it, but as he explained it has been around for years and the milder side effects are the common ones, they watch you closely with blood tests etc, it really does work though Kelly, I really would encourage you to try it.

Also generally Plaquenil  and most other DMARDS (disease modifying anti-rheumatic drugs) tend to work better when they are combined.

I hope your RA doesn't become severe enough or resistant enough to have to try the biologics but believe me if and when you need them it is very hard to get any government subsidies unless you are taking MTX at the same time (or with some drugs the criteria is that you have to have adequate proof that you have failed MTX therapy, and that you have tried triple therapy for more than 3 months, eg; MTX, Plaquenil, sulfasalazine etc) at the same time.

Another thing is that the prednisone long term is actually more dangerous than the MTX, so I would encourage you to get off of that as soon as poss.  Read my other post to Roxy re Pred for the side effects that have occurred with me after 6 years on it and no alternative.  My rheumy says I am like a time bomb waiting to go off!

So Kelly I hope you don't think I am being too much of a know it all, but I have been there and done all this and it is necessary on your road to effective treatment , one good thing is that history shows it is very effective in controlling RA and other autoimmune  disorders, plus before you can try other DMARDS you must follow the usual path of treatment,  Good luck and I hope your decision gets easier.  Kind regards Janie.
I've been taking MTX for 4 months, now. No big deal. Really. I have my hair, my liver's fine. My doctor monitors my blood every month. It doesn't make me sick. It doesn't change much of anything at all, except that I'm a little more functional than I was. It's also not a miracle drug - no huge remission.

It's not worth worrying over, if it can help you.

Cortisone is working nicely on your inflammation, but it isn't doing anything to protect your joints. You have to have that. Once your joints have eroded, you can't get them back. You'll end up crippled and in pain forever.

The truth is, there aren't any great answers with RA. You're always dealing with the lessor of evils.

Hi Kelly,

I was the same way ...very afraid to take methotrexate.   In fact I put it off for a bit until I was so sore and couldn't move.  I had to do something...so I began taking the methotrexate.  Sure glad I did...it's worked very well for me and I've had no problems with it.  I've been on it for over 14 years now. 

Good luck,

Kelly

Hi Kelly

These drugs are scary, but it is a matter of weighing up the possible risk of side effects (the worst ones are very rare) with the certainty of joint damage otherwise. Prednisone has lots more potential than mtx for bad side effects, if taken for a long time.

I'm on methotrexate again for the second time. The first time I was on it for 2 years and it bought me a 4 year complete remission (during which I time I was able to take up running.)

Just make sure you get your routine blood tests done without fail and stay away from sick people as much as possible.  And if you do get a 'lurgy while on methotrexte, see your doctor promptly.

All the best for improved health,   

Wendy38913.9381018519

I really had no choice about going on MTX. It was a very serious discussion between my doctor and me. For me, it was life or death because my initial symptoms were so serious. And, they started me at a pretty high dose.

Initially, it upset my stomach, but I got used to it. I still get a little fatigued and some stomach upset, but I can plan around that. But still, I am on a high dose.

You can't just stay on the prednisone. That is far more destructive in the long run. It is the intermediate tool that they use to hope to get the inflammation under control. But it does nothing for your joints and long term use of it will destroy your bones and joints.

First, they usually try the Prednisone, then add the MTX and see how you respond. Then, they will either taper you off the prednisone for add Plaquenil and then maybe a biologic.

It is all a toxic cocktail at best. But it is better than the deformity that can rapidly result in not being treated with these medications.

They are really strict on getting your blood tests done. If you have something show up, they temporarily pull you off to give your liver a rest and then you can go back on. Unless it is not watched carefully, your risk really isn't that bad.

But talk to your doctor about your fears and why he feels it is so important for you to take this. You always want to ask why they are doing this or that. People who do best are the ones you are more informed and are proactive in their treatment plans.

Good luck!

Hi Deanna,

You are always so sane and reassuring with your advice - you should write a handbook for the newly diagnosed. I mean it! There are not enough books on arthritis written from the perspective of someone who actually has it.

I was nervous about starting the MTX but it turns out the side effects were mild and they dont hit you all at once...it is sort of gradual, not a big deal at all. What you read about is in the really high doses given to cancer patients. I was nervous when I started Enbrel and Humira too. The one that I didnt worry about gave me bad stomach problems to the point I had to quit taking it...that was the plaqunil.

Dont worry so much about the side effects...you can always quit taking it if they are bad, but most of these drugs are not  problematic for most people.

Kelly~I've been on MTX for more than 4 years now with very little problems. It's made a huge difference in my well being and despite the fact that I am now on Humira as well; I honestly feel like MTX is the heavy lifter.

The things you read are scary....but they have to warn you about possible side effects. If you don't respond well to it you'll know rather quickly and you can stop it. The majoirty of us here do really well on it and the ones that haven't knew quickly and were quickly taken off it.

To say you'd rather deal with the effects of RA instead of MTX is only your lack of knowledge talking. Trust me; that's not the preferable option. RA left untreated or poorly treated will be far worse than the few side effects you're likely to get from MTX.

No doubt the good results you are getting from the cortisone injection will be short lived. I'd advise you starting the MTX right now while you are feeling better from the injection. Don't wait until the injection wears off. Start it now so once the injection wears off the MTX will already be taking effect and you'll have no gap in your relief.

Good Luck to you. Don't feel bad about being scard....that's natural. We've all been there.

Wendy,

Thanks for the comment. I'm collecting info for a book. But don't have the energy to do it. They have got to get some of my current problems under better control.

Do you know how wonderful all of you are? I truely mean it...just reading your replies has put me at ease. I'm still not 100% comfortable with taking MTX but I know I don't have much of a choice and your posts have made my decision to take it much easier.

My Dr. did prescribe folic acid so I'll be sure to take that as well.

I'm going to try to keep working but I'm off all this week coming up for vacation...probably a good time to start MTX and see how it affects me.

Thank you all for your great advice and for sharing your own experiences with me. I hope I'll be able to do the same in time...right now I need to keep educating myself to learn as much as I can about this nasty disease.

I'm just new to the forum, but have been diagnosed with Arthritis for about 4 years now and was offered Methotrexate about a year and a half ago. Only recently did i decide, with much support from my partner and family that it was the right decision to make. I started to take it in January this year and am still having constant blood tests and trying to find the right dose.

I was really scared after reading all the side effects and it took me a year to decide. Now i'm on it, i still feel pain but less so and my partner has noticed a difference, but i am lucky and have had no side effects at all :) You decide what is right for you, but i think it's worth it in the long run :) If i get a remision like a member mentioned previously, i will be ecstatic with the decision i made :)

HI KELLY,

AS YOU CAN SEE SOME TOLERATE MTX VERY WELL AND ARE HELPED BY IT. OTHERS AREN'T. I WAS ON PLAQUENIL BUT COULDN'T CLOSE MY FINGERS INTO A FIST OR WALK DOWN STAIRS. GETTING UP OUT OF A CHAIR AFTER SITTING FOR AWHILE WAS AGONY. I'VE BEEN ON MTX FOR ABOUT A YEAR AND A HALF AND I'VE RETURNED TO ALMOST NORMAL AND THE ONLY SIDE EFFECT I GET IS SOME MILD NAUSEA AND AN OCCASIONAL HEADACHE. I GOLF,DO HEAVY WORK WITH MY HANDS ETC. AND GENERALLY FEEL GOOD. I'D GIVE IT A TRY IF I WERE YOU AND SEE HOW IT WORKS FOR YOU. I SURE WOULDN'T WANT TO GO BACK TO HOW I FELT BEFORE MTX. GOOD LUCK TO YOU.

                                     DON

I've been on it for 1-1/2 years and no problems at all.  I take the pills.  Made a world of difference for me!

Susan

Another thought to keep in mind is that your chances for remission are greatest in the earliest years of this disease. Hitting it aggressively up front might actually kick it in the butt. Ah, now that's a nice visual.

hi,

i've been on mtx for 7 mo's now & it works pretty good for me. i have small side effects that seem to not be occurring anymore. and my doctor is monitoring me through monthly blood tests which are always fine so far. 

I feel better now than I ever have since this disease started 12 years ago.

Only side effects are a headache on days two and three after I take the MTX,but that has been greatly helped by splitting the dose into two...one in the Ap and one in the PM. 

 

.

Hi Kelly,

   I take the injectable MTX. I have taken it now for over 6 months. I atrted with the pills, I think I had more side effects from the pills then the shot, hair falling out. But I also take folic acid 3 mgs a day, to help with the side effects. I also am back on the Enbrel and take 5 mg Pred. I don't seem to have many side effects. You can always stop taking the MTX. At least give it a try!

Deb
It can be scary when you are not used to taking medication.  Before RA, I took the occasional Advil, and that was it.  Ever.  Now I am on all sorts of stuff, but I have learned that this is part of my life and part of having a disease. 

I think it is easy to scare yourself into a corner and live in fear.  Research, read, ask lots of questions and make your best informed decision you can, then move on.  It is no way to live, in fear.  I think it is important to feel like you are able to work on managing this disease with your own decisions.  I personally take my doctor's advice and feel that he is the expert.  So far, I have not been led astray. 

I have been on MTX for several months with little to no side effects.  My mom has been on it for years with the same results.  I feel that it helps stop the progression of the disease, which is key.  Hang in there...it is overwhelming sometimes to think about.

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