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Rheumatoid Arthritis
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Posted 3/2/2010 7:46 PM (GMT 0)
Hello all....I just took my first dose of Methotrexate (MTX) a couple days ago...so far feeling ok...just tired, but that is my norm so I am not sure if any of it is from the med. I have RA and crohns. Initially was VERY bad off, but in general I have been doing well. I have gone through the ranks of drugs, and am currently taking Orencia. I felt as if I was doing well (I mean I can walk...which doesn't happen off meds), but the doctors thought I needed more, 3 different rheumatologists and PCP told me its time. So here I am. I have resisted taking the MTX for 8 years, but now that I am not longer able to have children I didn't really have an excuse. I'm a pharmacist so I know the side effects...and I'm scared of them. I am curious about how people do on this med long term...after the initial period of getting used to the med. Aside from the possible fatal side effects, I am concerned about loosing my hair and never drinking again. I have also been trying to find information on exposure to my family. I am not able to conceive so we do not use protection, but I am concerned about exposure of the drug to my partner and have not found good evidence for or against using protection during intercourse. Any insight anyone can offer would be great.
Posted 3/2/2010 10:18 PM (GMT 0)

Hi Honeybee79 and Welcome to HW and the RA forumsmilewinkgrin

I have Crohn's disease and AS and I have been taking MTX now for 4 years.

At first the MTX gave me hideous headaches, but once my body got used to it they stopped. I do have hair loss, from it and the pred. I take 5mg of folic acid a day and that is supposed to help. As for drinking, I just dont do it as I dont feel its worth the risk. I have blood tests every 6 weeks (when I remember :-) ) to monitor my liver etc. I also drink a lot of water the day I take it so I dont get dehydrated and it seems to stop the headaches. I feel the MTX really helps my AS, hopefully it does the same for you.

Good luck and keep us posted.

Jo

Posted 3/2/2010 11:45 PM (GMT 0)
Hi Jo,
Thanks for the reply. I noticed from your post that you are taking Humira. That worked great for me for over a year. It was the first time since diagnosis that I was able to get of prednisone. I started to have a shortening of effect so I started using it about every 10 days, which worked great for awhile until I developed anti-bodies to it and had to stop. I could barely walk or care for myself so I had to go back onto the prednisone for a short time, but since starting the Orencia I have been off it again. I was so hesitant to start the MTX because I feel like I'm doing well, but I still have some pain (I guess I have just learned to live with it) and the MD doesn't want me to. She feels the Orencia will work better and have a longer use for me if I combine it with Methotrexate. I am hoping the benefits outweigh any problems I have.

Thanks again for your input.
Posted 3/3/2010 12:24 AM (GMT 0)
I've copied a thread I posted earlier. Hope this helps. I think eating/drinking these may be why some people haven't been successful taking MTX.

I

So many of us are on this medicine I thought I'd share info from an article I read in an arthritis magazine

Apple, orange and grapefruit juice block methotrexate and some antibiotics: ciprro and levaquin

Milk and yogurt block 'cycline' named antibiotics, and cipro.

Wait 3-4 hours after consuming these to take your meds. Or ask your pharmicist.

Posted 3/3/2010 6:03 PM (GMT 0)
Blah...today I feel terrible...not sure if its the drug or me freaking out about the drug or just a bad RA day...have a headache, super nauseous, tired, hands and feet are killing me and I've added 5# of what I'm hoping is water over the last couple days...I hope this feels better soon!
Posted 3/4/2010 6:32 PM (GMT 0)
I can't tolerate MTX at any dosage. Me and the toilet bowl were bff's the whole time I was on it and I lost a LOT of weight. Stopped eating because I just couldn't eat, it was terrible.
Posted 3/4/2010 6:56 PM (GMT 0)
WOW! That is terrible RunAround...that is what it is like for me when my Crohn's is out of control. I didn't eat if I wasn't at home...because I knew I would be needing a bathroom almost instantly sad
Posted 3/7/2010 12:56 AM (GMT 0)
Hi Honeybee,

I've been taking Mxth for 18 months now for AS. Last November my blood tests came back very high so I was taken off it straight away. I noticed a downturn in my condition by not being on it as it works very well with remicade infusions that I have every 6 weeks. Thankfully I've been back on it for the last 3 weeks but once again the head down the toilet bowl has started on some mornings. But to be honest it's better on it than not so I cope.  I'm always tired, so not sure if it's the AS, remicade, mxth or one of the many (or all) of the drugs I take.

Hope this has been of some help to you.

Posted 3/8/2010 3:06 PM (GMT 0)
Honeybee79

I was Dx 4 yrs ago, I tried everything to avoid going on MTX, (antibiotics, body cleanse, overdosing on vitamins etc.)The pain was so bad I had no other choice. MTX made me sick the day after for about 3-4 months, but it did work, for about a year then we added enbrel. And after being on enbrel for 6 mos I stopped the MTX as it scares me too. I have been on enbrel alone for about a year. But I am starting to flare, it might be time to switch or add something else.

I resisted meds for along time and one day the DR looked in my face and said what kind of life do you want to live, pain free or med free. That woke me up, I had a teenage daughter I couldn't even walk the mall with her. We have walked miles since then. You will find a combination that works and then we have to find another one.

pjp
Posted 3/8/2010 3:56 PM (GMT 0)
Saturday night was dose #2 and I was not looking forward to it, but surprising I felt really good yesterday.  Even managed to get out for a hike with my son.  Much better than last Sunday.  I am hoping that is continues.  I haven't really noticed an effect from taking the MTX, not that I was expecting one this soon.  Since I was feeling so good before starting it I'm not sure how much I will notice, but my dr. thinks that adding it will help the effectiveness and longevity of the Orenica, because when that stops working I don't have much in the way of other options.  I have tried Enbrel and Humira and both worked for a short time, but I ended up having a reaction to the humira so now drugs in that group are out for me.  So other than new therapies coming out in the future, I'm basically out of other options...and we all know that most treatments are short lived so hopefully the MTX will keep the Orencia working for man years...and hopefully I can tolerate it that long. 
Posted 3/17/2010 3:33 AM (GMT 0)
I was on MTX for about 8 months. Initially the doses made me quite sick for a few days but after a while I kind of got used to that. When we added Enbrel the sickness was HARDCORE. The two together were more than I could take. I not only felt sick but was washing my hair down the drain. I told the Dr. we had to stop MTX. I really like the Enbrel, but my hair is still sketchy. My Dr. told me that he has a patient that has been on it for 20 years. I find that hard to believe, but I guess anything's possible.

Incidentally, Folic acid really does help. My Dr. gave me a Rx for it - not the over the counter dose.
Posted 3/20/2010 3:27 AM (GMT 0)
Hey all...thanks for the replys...been super sick that is why I haven't updated lately...got a sinus infection and a bad flare up at the same time so we have stopped the MTX for now. I was also having bleeding gums, mouth sores, and couldn't pee. We are holding for a month and then retrying to see if the peeing issue is resolved. After several days of prednisone my joints are feeling better so we will see. I am not sure how I feel about trying again :(
Posted 3/20/2010 4:46 PM (GMT 0)
Mtx gave me repeated mouth sores so now upped my folic acid to 5mg daily so we'll see. I'm also using gelclair 3 times a day as a preventative measure. I'm also on fourth course of anti biotics for a wee infection that just won't go. Gone onto injections now though so maybe things will improve. Defo better on the sickness front as it doesn't pass through the stomache so happy days :-). Good luck with it all though and I hope it works out for you.
Posted 3/27/2010 11:35 PM (GMT 0)
I have been taking MTX and now Cimzia shots for months and I to am having best friend issues with the toilet. I do think it is helping but I am not sure it is worth it. side effects, sickness, and long term effects, not to mention the fatality issues. i wish you all the best and look forward to hearing your outcomes. Be well
Posted 3/28/2010 2:37 AM (GMT 0)
I've been on MTX for 2+ years and other than fatigue (manageable) I have no tummy troubles. In the beginning when I was also on mega doses of prednisone I took a prilosec 1 x per day too. Has anyone tried that?
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