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MTX stop working, now what?!

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Crohn's Disease
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Posted 3/22/2012 11:19 PM (GMT 0)
I posted back in November asking usually when the arthritis would come back after stopping methotrexate. I de tox because of my endometrosis was causing cyst, lost an ovary back in Nov so i figured I better try now rather then maybe never. With in 5 weeks of stopping mTX the arthritis came back full blown. Crippled really... unable to use stairs or open any bottles. I was miserable I couldn't even take the dog out!! I had to make a tough decision at that point and think what was more important: Live a happy healthier life arthritis free but not be a mom or trying everything in my power to have a kid but be sick and miserable (at this point the pain was just blocking any thinking I just wanted relief) So I went back on MTX and gave up having a baby for that moment. I went back on it the first week of Dec (the first time being on it with in 3 weeks I saw a difference with in 5-6 weeks I was arthritis free) but this time it's a no go. Swelling has come back granted not as much pain with out mtx but it's still not arthritis free!!!
I've tried everything before MTX. Remicade, humira (I'm still on it) Pred,azethioprine. All the natural stuff too.
At least in the mean time I'm almost crohn's free...the only thing I still can't eat is lettuce

Now what?!?!?! Has this happen to you if so what was next and did it work...is it still working?

Posted 3/23/2012 9:07 PM (GMT 0)
no one had this problem? I'm feeling a little lonely here lol!! Well if no one has had this problem that's great. I feel like a medical disaster ! =/
Posted 3/24/2012 4:33 AM (GMT 0)
Hi RA&CD132010,

I haven't answered your post because I've never had arthritis. I know that there are some others here who have, but I think only a small minority. Everyone here is concerned with Crohn's primarily. I sympathize with anyone who has both Crohn's and RA - dealing with both has got to suck big time.

The main connection between Crohn's and RA is that they're both inflammatory autoimmune diseases, so sometimes the same drug works for both. I am treating my Crohn's with an herb, and it's working for me. I don't know if it would work for arthritis or not, I goggled it and see that some claim it works. So, I'll give you my info, and let you decide if you want to pursue this method of treatment.

I made a lengthy post about it here:

https://www.healingwell.com/community/default.aspx?f=17&m=1385214

Despite some initial enthusiasm, I don't think anyone followed up. As far as I know, I'm the only person on this forum who is using lingzhi as a treatment.

Feel free to ask me whatever questions you like about it, and let me know if you try it, and if it works. You've got to give it at least a month to see if it really helps.

best regards,
Robert
Posted 3/25/2012 12:56 AM (GMT 0)

RA&CD132010 said...
I posted back in November asking usually when the arthritis would come back after stopping methotrexate. I de tox because of my endometrosis was causing cyst, lost an ovary back in Nov so i figured I better try now rather then maybe never. With in 5 weeks of stopping mTX the arthritis came back full blown. Crippled really... unable to use stairs or open any bottles. I was miserable I couldn't even take the dog out!! I had to make a tough decision at that point and think what was more important: Live a happy healthier life arthritis free but not be a mom or trying everything in my power to have a kid but be sick and miserable (at this point the pain was just blocking any thinking I just wanted relief) So I went back on MTX and gave up having a baby for that moment. I went back on it the first week of Dec (the first time being on it with in 3 weeks I saw a difference with in 5-6 weeks I was arthritis free) but this time it's a no go. Swelling has come back granted not as much pain with out mtx but it's still not arthritis free!!!
I've tried everything before MTX. Remicade, humira (I'm still on it) Pred,azethioprine. All the natural stuff too.
At least in the mean time I'm almost crohn's free...the only thing I still can't eat is lettuce
Now what?!?!?! Has this happen to you if so what was next and did it work...is it still working?

I am a moderator elsewhere, but I follow a lot of threads elsewhere that I don't post to, but I made a point to in this case because I was scared when I read you talking about 'babies' and 'pregnancy' and and 'methotrexate' together in the same post - NEVER take MTX if you could ever possibly get pregnant! It is a Pregnancy Category X which means it is known to cause fetal defect and death, and you have to take 2 forms of birth control when taking it.

MTX can cause damage a fetus at any point of a pregnancy, and can stay in your system long after you stop taking it. The effects are dose-related, and every patient is different (its is actually prescribed to induce abortion in high doses), so you need to talk your your doctor as soon as you can, and if that doctor is clueless keep looking until you find one.

I am sorry if that seemed abrupt, but I felt like I needed to let you know that, I hope it helps, and keep trying...I will be pulling for you and you are never alone (even if it feels like it a lot). :)
Posted 3/25/2012 3:07 PM (GMT 0)
I have Crohn's Arthritis and it can be so painful. It comes and goes for me. My Rhuemy told me that it will be under control once the Crohn's is under control. Although, no matter what meds I am on, my Crohn's has seemed to be under control (clean scopes), but my joint pain remains to varying degrees. I hope you get some relief. I have decided not to have children so I can live a more pain free life. To be honest, I don't think I have the energy to chase after a little one. I totally need my sleep and I know with children that is sometimes impossible to do.
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