help, mtx not working

Im 32 yrs old & from canada, new to this site. I have RA, been on mtx for 6 weeks, so far im not feeling any better, Im exausted, also on sulfasalazine 4 tablets a day. Doc just bumped me up to .8 of mtx from .6 ?? i dont know how long this shot is supposed to take but im getting frusterated.....anyone? im so sick of pain & my elbows wont even go straight anymore....& ive lost my strength...

Hi Jen, welcome to the Creaky boards!

As you are now finding out, there is no one size fits all when it comes to meds. Each individual has a different reaction to the same medication. It will take time and patience to find the right combination of medications unique to you.

Often a "fair trial" period for a new medication can run 3 to 6 months. Mtx is one of those meds that typically takes that long to tell you if it's going to have any effect or not. Your rheumie may add something like Humira or Enbrel to the mix.

It can be extremely frustrating while you wait, try something new, wait again...it's part of the process. But when you hit the the cocktail that's right for you, you'll know it! [[gentle hug]]

Are you taking oral mtx. or giving yourself injections? Sometimes the injections work better with fewer side effects. Ask your doc about it.

Carolan

Hi Jen,

Hang in there, it can take a lot of trial and error before you get the right mix.

I had a great first year on plaquenil after the initial months of a horrendous flare when RA first ever kicked off.  Slowly the Plaquenil seemed to lose it's effect and then MTX was added  which didn't make a huge difference.   It wasn't unitl I went onto a trio of meds with Enbrel now added to the mix that everything turned around.

It took me four years by which time I could hardly walk or bend any limbs easily, but that is partly due to me being apprehensive about taking anything other than Plaquenil.   My Rheumy supported me in this but looking back I would have been better to have gone with his advice.   That's why I would advise anyone to ensure that they have a Rheumy they trust and can talk to.   If additional meds are recommended then I would suggest that you give them a try but allow at least 12 weeks before you start to write them off.  

Enbrel can work very quickly, for me within days.   Although I thought the MTX wasn't working it was once the Enbrel was introduced that the difference came and only when MTX was stopped temporarily that I realised both were needed to work together for me.

Research has shown that a head on approach is better, therefore a triple mix is preferred early on and gradually reduced if possible, rather than the other way around.   Providing all blood checks are carried out at regular intervals as advised, then your Rheumy can keep a close check on any negative effects.

Best of luck.

Dozey.

Hey Jen!  I can empathize.  It took about 7 months to find the right group of meds for me.  I wound up in horrible shape, but adding Humira to the mix I was already on made all the difference.  I know it's hard to hear, but try to hang in there.  Give the meds a little time to work.  Things will eventually get better.

Hello Jen,

As you are aware and several folks have stated there is no One Size Fits all with this disease.

Though you want to be as aggressive with it as possible. I also have major issues with my elbows and have had two surgeries in the last two years for them. 

Talk to your Rheumy and let him/her know the MTX isn't enough do some reseach on the Biologics that are out there.  Most of us have started or are on Enbrel. There are several on Humira, Rituxan and several others.  It all depends on what is best for you.

Are you also on any NSAIDs? These are important to take in conjuction with the MTX.  I am on the following: MTX .50cc a wk, Celebrex 400-600mg a Day, Enbrel 50mg a wk. Of course alll the suppliments that go with them. Though they are the most important,

Also for your elbows, make sure you stretch them and I am now using Voltgran Gel on them 3x a day.  It actually helps some.

Good luck

Hi Tess,

Your comments on mixing Nsaids with MTX was interesting as that is exactly what I was warned against by my Nurse Specialist.   I have called her when I have had extra pain that has dragged on and on and she has warned me that it is not adviseable.   Maybe that's because of the Enbrel as well, I'm not sure but worth double checking.

I took Nsaids throughout the day, every day for three years but once I got onto my MTX, Enbrel, and Plaquenil mix I was told to quit and have specific steroid injections if the pain was really bothering me.

Back home tonight so I shall watch out for you over the next few days.

June.

X

June,

You are correct about NSAIDs if you are on MTX and plaquenil. Those of us that are not we are able to take the MTX (DMARD), Biologic and an NSAID such as Celebrex.

I hope this is the case since this is what my doc has me on....  

Got your post card today!!! Thank you..... 

Tess

Hello everyone!  I was just diagnosed with R.A. and (perhaps) Fibromyalgia as well, am 36.  I have been on methotrexate for 5 weeks. It is awful right now.  The day after I take it am very nauseated and I seem to hurt more then other days.

But my main question to everyone is has anyone experienced weight gain on mtx?  I have been doing WW since January and had lost 17 lbs.  I gained 10 lbs in a week with steroids, then lost it in about 3 weeks.  Recently, even though I am walking 2-3 miles a day with my dog and eating around 1800 healthy calories a day, I have put on 5 lbs in the last 3 weeks.  It is very frustrating!  I thought I had conqured my weight problem, finally, and to have this set back is heart breaking. Thanks everyone for any insight you may have.

Jen S.

Hi Jen- welcome!

Getting used to methotrexate can be really rough- it definitely made me more tired at the beginning than it does now (or, maybe I've just figured out better how to incorporate it in my life so its less disruptive). Hang in there!

There is a weird thing with RA and weight in the beginning for some people- I think a lot of people lose weight when they're untreated (I lost about 15 pounds, although I was really really sick)- its partly due to loss of appetite, and partly due to the fact that your body is using a ton of resources to launch this immune attack against your joints and cause low grade fevers and all of the lovely other effects of this disease! That stuff can cause you to burn more calories and maybe eat less and as a result lose some weight (as I understand it). But then, when you're treated, and your immune system isn't raging, all of that stops and you can gain some of the weight back. I bet that would be really frustrating in the middle of trying to lose weight! (I wasn't trying at the time, although I probably should have been!). I don't know that it happens to everyone, but weight loss is often listed as one of the symptoms- so, its possible that the problem is more from the methotrexate helping you get better than the methotrexate making you gain weight. That also might mean that once you get your body under control, you'll be able to lose weight again- if you can exercise, that is a huge step in the right direction, for me, that can be one of the harded parts. Maybe you could ask your doctor what she thinks about it, too?

Hi all,

It was when I was at my lowest after a tough 4 year slog that I lost 28lbs.   I had a huge appetite and couldn't satisfy it, but the weight dropped off.   I've now managed to gain 14lbs that I'd lost over the last year and the appetite has settled to be more manageable although I still eat good sized portions - I love my food.

My Rheumatology nurse explained that it's the activity of the immune system and therefore the metabolism.

Dozey.

Hello!

I have been on mtx for about a year, 2.5mg 10x week, and now I have been having alot of  stomach burning, for about the last 3 weeks or so. I think it may be an ulcer.  My rhumey increased my folic acid, and perscribed me some meds for the acid in my stomach, in hopes to ease the pain.  Time will tell if this works......    I guess my question is, has anyone had any symptoms like this while on mtx?   And if so, what did you use to help with the stomach pains?

Thanks, jenmik

Hi,

Omeprazole is often used (UK) to guard against this whilst taking anti-inflammatories.

Anti-inflammatories are to be avoided whilst taking MTX and Enbre, and of course - alcohol (MTX).

Dozey.