Advice please

Posted , 7 users are following.

i have been on MTX for about 18 months taking two 10mg tablets a week. After some time I started developing liver problems and the dose was reduced to one 10mg tablet per week. In December my liver blood results had improved and because I was in pain it was decided to reinstate the higher dose but with more folate. I also have Cimzia injections each fortnight.

all this time I have never had any side effects from MTX but for the past two weeks I have been getting very nauseous, usually starts just after I take them and it's lasting a few days. I've also noticed a lot of hair falling out too. 

Has anyone else been able to tolerate it for a while before it causes side effects?

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11 Replies

  • Posted

    Hi Mary,

    I have a real intolerance to a lot of meds and after my sister's reaction to MTX I declined taking it.  Her reaction was immediate, sickness and I mean sickness within 30 minutes, although she thought at the time it was something she had eaten. Because she didn't realise it was the pill, she took the next one and immediately it all started again.  Her Rheumy told her to persevere, but within a couple of weeks the sickness still continued and like you, her hair was falling out so she stopped it. 

    I had a really bad reaction to  Hydroxychloroquine,  I took it for about 6 weeks, but my yes were not focusing properly,  headache, itching, sore throat, breathlessness, mouth ulcers, stomach cramps and a feeling of nervousness throughout my body.

    I hope you find something to suit you. x

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  • Posted

    Just because someone had a bad reaction to a particular medication it doesn't mean you will, we are all different.   I took hydroxychloroquine for a while and never suffered any side effects, didn't reduce pain or inflamation though so I ceased.  Same with MTX, no side effects!   I did get terrible side effects from cimzia and now arava though.   The worst for me is tramadol and ibuprofen, itchy, itchy, itchy!

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  • Posted

    I have been taking MTX for 8years now with only minor side effects.. short breath, ulcers, fatigue and feeling really out of it I have always been on 20-25mg. But I tried hydroxychloroquine and had a bad reaction. Could not keep anything down and since I am young my doctor wants me to get off MTX so I that I can have kids. So my doctor wants me to give hydroxychloroquine another go - if I can't handle it I will have to take something else. Hope this helps you!

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  • Posted

    I'm on MTX 12.5mg for almost a year. No serious side effects apart from hair loss.

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  • Posted

    Thanks everyone, I was just disappointed that these side effects came on after such a long time. I find Cimzia very easy to take but took Hydroxycloroquine for a while but found it didn't help much at all so after talking with my Rheumatologist I came off it. Even with the higher dose of MTX I am still getting stabbing pain in my feet, my hands and feet are swollen and hot, I'm exhausted all the time and have a dull headache too. It's such a rotten disease to have! Sorry, I'm a bit down with it all today.

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  • Posted

    Hi Mary:

    When I first was put on MTX about 6 months ago, I had a complete intolerance to the pills. I told my Rheumy and he said as I got more of it in my system the sickness and fatigue would start to subside. After 4 months of gutting out the stomach sickness and fatigue, we finally changed over to injections once a week and my stomach upset is gone, but I still am fatigued for a day or so. I found much better tolerance with the injection rather than the 25mg tablets I was taking.

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  • Posted

    Hi Mary, after u reduced the MTX to 10mg. a week how long before u started seeing the liver count starting to come down and how high did the liver count for? Thanks Jo

     

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    • Posted

      Hi Jo, I keep records of all my blood tests done monthly so I can tell you that my ALT reading, which should be under 35, was usually in the 40's and then spiked to 151 on 4/8/16 That is when the MTX was reduced. My next bloods were done on the 18/8/16 and the reading was 36. You can see that it reduced immediately and has stayed low, even now I've gone back to 20mg at the beginning of December, ALT 27, in fact the ALT was 30 on the 20/1/17. I have tried to be more careful of my diet, no fatty foods etc. to give my liver a helping hand and reduced my alcohol intake to a couple of glasses of wine maybe once a week (not easy when you have a hectic retired social life haha). Hope this helps. Mary 

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    • Posted

      Hi Mary, my alt/AST has for the past 3 years always been 20/21. I am on MTX and 6months ago I started Oriencia.  Had blood test 4 weeks ago and my alt/AST was 44/39.  Saw the dr. on Monday, had another test and the ALT/AST had gone even higher 49/44.  My doctor does not seem concerned.  I sent  him an email and still waiting to hear back.  When I saw that my alt/AST had jumped up I decided to drop from 20 mg. MTX to 15mg. The Friday before my appointment . When I told the doctor that I lowered my MTX dose he said "where did you get your medical degree" of course I didn't reply.  To be honest I am not sure if the MTX is the cause or if the Oriencia could be the cause but since I don't get any answers from my doctor I have decided to not take the MTX and will have another test done in 4 wks.  By doing this I think it will tell me which medication is causing the liver spike. It can't be alcohol because I don't drink.

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    • Posted

      Jo, please be careful stopping your meds without consultation with your Rheumatologist, sometimes it can be worse for you stopping them. Those results are not too bad (compared to mine) and maybe you could alter your diet a little. I know MTX lists liver damage in its leaflets but not sure if Orencia does too. Your Rheumatologist should be able to tell you. If you do decide to stop though I hope you get some relief from the RA some other way. Good luck.
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