Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Darned methotrexate!

Hello everyone! I have a few questions/comments about methotrexate. I have been on mtx for two weeks, and tommorrow will start the third week. I know there have been many discussion on mtx before, and I really have tried to read all the old posts, but I just wanted more feedback if you've had any experience with mtx.

So far, no improvement. In fact I didn't realise how much my AS had progressed until now. I have pains in MANY more places than I knew about since I've been on a cocktail of different NSAIDS and COX-2's for the last few years. I've lost almost ten lbs. during the last two weeks (not by choice)and I sleep all the time. I'm just exhausted, either from the meds or just from all this new pain. Has anyone had pain in their teeth? I mean where it feels like a cavity, but it's not? I've also noticed I'm grinding my teeth a lot more. Anyone else have this on mtx? And my last question, when will this work???!!! (if it's going to) How many of you are on mtx with success? Thanks guys so much for your input! I know you guys will come through! You always do!!
SAM

Hi Sam,
I'm on mtx. If you want to PM me I'll get back to any questions you might have.
Michelle

Hi sam ..I have been on mtx for about 4 yrs now ...It has been great for me so far it is the only thing that keeps my knees from filling with fluid and it has helped me all over my body (mostly knees and shoulders)and had lowered my inflamation levels in blood tests.It does take at least a few weeks to a few months my doc says get some results some people even longer .It took me about a month.So far I have not had any side effects except once out of 4 yrs one blood test showed my liver slightly outa line but the doc lowered the rx and my levels are perfect now.Also I would not drink alc. at all on this med they dont mix well.For teeth pain im not sure ive ever had this but since ive got a.s. my teeth have been going a bit south .There has been threads on here before about as and teeth probs they seem to have a link!Hope any of this helps ..Feel free to pm questions ..Steve

I was on mtx for 2 years. It took about 2 months before I noticed a difference. In the beginning it was great, like the miracle I was waiting for. Then I had very high LFT's it affected my liver so badly for so long I had to come off MTX. This does not happen to everyone I might add but make sure you are tested. Are you on tablets or injections? I was on injections once a week. Don't forget alcohol is not good with this. You are also more prone to the effects of the sun so be careful. Hope you are feeling better real soon and the MTX kicks in.

sam, aloha again

it can take up to three months for mtx to work its ways in your system...how much ya on ?
how's your bloods doing ?

fatigue is a normal part of the package...are you doing folic acid? b12?

on the nine months i was on mtx...now i had bad teeth to start with, but they all got abcessed...

now the zen of mtx...if it fails for you, you're closer to enbrel.

all the best
aloha Ben

I've been taking Methotrexate for about 8 years now and it works great for me. It did take about 6 weeks before it really started to work. Make sure that you take folic acid when using methotrexate and don't drink alcohol.
You may see a few side effects from using it at first but they should subside after a bit (fatigue,mood swings,etc.) I still get the occasional tooth ache and grind my teeth and I have false teeth...go figuire??

Dan

Hey Sam:

Wanted to say a few words and to give you a few links. Firstly, here is a drug profile for MTX from the pharmacy forum. Methotrexate profile Sometimes links like this are so far back in the forum that it takes a lot of digging. It might help you with what are recognised side effects of MTX (I can help with definitions if need be). Of course, things like 'tooth aches' and 'teeth grinding' aren't likely to be listed, which is why it's important to poll the wonderful folks of KA. Interestingly, I wonder if the mouth ulcers that you can get with it are related at all?

Secondly, I wanted to share this link too: How long until methotrexate works?, if for no other reason than to show that others have wondered the same question before you.

From my perspective DMARDs like MTX can take anywhere from 6 weeks - 3 months to declare whether or not they're going to work. And that doesn't include potential drug increases along the way (sorry to say). For myself, I'm not sure if the MTX worked well for me or not, although I should mention that I did have more effect with the injectable version than the oral route (more bioavailability that way). As for side effects, I was fatigued and had some hair loss. Occasional mouth sores. It's unfortunate, but often times you can tell if a drug is working by the presence of side effects. Then of course it becomes a balancing act, 'are the side effects tolerable for the benefits that I'm getting'. I'm a tooth grinder too, but I never linked it MTX use, moreso to TMJ involvement. I have a mouthguard that I can wear when things get bad for me (and it's oh so attractive too ).

I hope I've answered some of your questions. I've modified my own reply so many times that I've lost your original post in the process!

Take good care, and keep asking the great questions!
Jeanna

Good morning all!
Thanks for the links Strutsy, it's always good to read other posts, and somehow I never saw those when I searched for methotrexate..Oh well. So your mouthgaurd works pretty well? I had one, and grinded right through it in a matter of weeks. I decided it was pointless. What's yours made of? (Oh, and my husband also thought it was extremely attractive! A real turn on!)
So Dan, you grind too? I wonder if mtx is the culprit??? Thanks for replying so quickly.
Aloha my friend Ben!! I am on 10 mg (pills) per week and 1mg folic acid each day. My doc hasn't ordered blood tests yet, and I don't go back until March 16th. Should I be concerned?? I now FluffyPechey said the liver problems were present with mtx.
Thanks also Steve and Michelle. So far I think I have a little more info. It's true what they say, "knowledge is power". I always feel better just knowing what is happening even if my pain is still around.

If anyone else has successfully (or non-successfully) tried mtx, I would still like to know. It always helps to hear other KA'ers viewpoints. Thanks everyone!
SAM

You're right, even if it doesn't work, I'm one step closer to the Holy Grail!!