MTX side effects or RA

Posted , 12 users are following.

This one not about myself but my girlfriend she has been diagnosed with RA about a year ago and was put on methotrexate 4tabs once a week with one folic acid on the other days.Her dose has been upped to eight MTX once a week but she seems to be getting worse.Both her elbows have what look like golf balls growing out of them.her feet are swolen,wrists are going the same way.Is this the side effects of MTX or just the RA taking its toll?

0 likes, 11 replies

11 Replies

  • Posted

    Sorry, but I think it's the RA!  Have they discussed something like enbrel?  Keep us posted!

  • Posted

    Sorry to hear about your girlfriend's diagnosis and her issues with MTX. I too got worse on that same medication and got off of it. Everyone's system reacts differently to medications so she probably just needs to find a medication that reacts well with her body. There are plenty out there to try. MTX is considered 'the gold standard' of RA drugs, but it did nothing but make me feel worse and I know others have had the same issue. Have her talk to her doctor asap and have them get her on something else. Good luck to her! 
  • Posted

    The lumps on her elbows are probably rheumatoid nodules. I agree with suelmc222. Methotrexate didn't do me much good either but it the cheapest and most succesful drug so docotrs always start with it. RA is a strange disease. It behaves quite differently from one person to the next. A drug that is magic for one person does nothing for someone else. Time to talk to the doctor again I think.

    In the self help department, good supportive footwear really helps feet and a trip to a podiatrist for orthotics might be worth a look. Using a wrist splint at night when wrists often hurt the most, will force that hand to rest. Pharmacys usually stock them.

    Don't underestimate the power of rest - preferably in bed. RA severely punishes us heroes/fools who soldier on. Took me a while to learn that one!!

  • Posted

    I was up to six Mtx per week when I started growing a nodule near my pinky toe. We switched to Enbrel without the Mtx and I feel a lot better but still have the nodule after five months. It is a side effect of the drug. But they do happen because of RA.

    The drug or the disease? It's really true that everyone reacts differently to both disease and treatment. Keep her talking to her doc.

    I'll say that actually I feel like a new person on Enbrel and only hope it's long term. Hope the best for your girlfriend!

  • Posted

    The symptoms you describe sound like RA ( the side effects of methotrexate are feeling sick/ yuck brain fog etc) although some folks just can't tolerate and don't benefit from methotrexate as mentioned in other posts .

    it sounds like her symptoms are escalating so she really needs to contact her rheumy nurse/ consultant about what s happening. 10 tabs once a week is usually the most they ll go up to ( with same mg folic acid taken the next day or through the week) but there are another couple of drugs they can add. It takes about 12 weeks for any of these, including increased dose to take effect. In the meantime they could offer her something to relieve symptoms while waiting to see if the methotrexate is going to help.

  • Posted

    Hi - sorry to hear the problems with your girlfriend.

    I'm not a doctor - But to be a bit technical - will try and explain clearly why some get better response from certain drugs and others do not.

    There have been medical studies done that show that people that carry certain genes respond better to Methotrexate.  My belief is that this is because the target of Methotrexate is not just the immune system - but also has some antibiotic capability (in Cancer treatment it limits cell replication) but can limit bacterial growth in infection too by removing folate.

    There is lots to promote that bacterial infection can be part of the cause of rheumatoid arthritis with 2 key bacteria implicated 1) Proteus Mirabilis 2) E Coli.

    Which is why for a lot of people they can also fight RA with antiobiotic therapy (very low dose Minocyline).

    The reason why sometimes Bacteria are at the heart of RA is that there are amino acid sequences that are similar on the bacteria to certain genes.

    Diet changes are related to the above because foods (especially when heated) they also contain some amino acid sequences that are very similar to bacteria (especially complex gluten proteins) - and are at the core of what the Rheumatology researchers call citrullinated proteins and can be the the cause of epotiope spreading to other tissues. 

    My belief based on reading lots of medical studies is that for people that Methotrexate does not work - that an elimination diet to see what proteins MIGHT be reacting is more likely to be a factor in those cases.  Those people may not have bacterial infection at the heart of there RA but may be reacting to 1 or more specific food proteins.

    It is also worth considering that a known side effect of Methotrexate is to increase Intestinal permeability - which allows further undigested proteins (bacterial or dietary) through the gut wall.

    • Posted

      Just listening in on this conversation and interested in what you ve written.  I know of another person with Chronic fatigue syndrome who was treated with long term low dose antibiotic for rickettsia by a medical specialist / researcher in this field .
  • Posted

    Buckeyes,suelmc,gail32047,emFox,Rowbirdie andTreatMeGently thank you for your advice and concern good to know others care CHEERS
  • Posted

    I too had problems with MTX. It started off okay but then I started to feel really sick on it even if I took folic acid.  I also had the nodules on my arm near my elbow - just at the point where you lean on it if you are sitting at a desk. Eventually it went (after probably 2 years) and it's been gone for about a year, but hs just started growing again.

    As most people have said, RA is different for us all.  I also think gail32047 has a made a valid point....never understimate the power of rest.

     

    I hope your girlfriend manages to sort out her medication and what works for her.  I have been on an elimation diet and it's made a huge difference to my joints and wellbeing.  As it really does hit us all differently tell your girlfriend not to give up finding what works for her, no matter what any doctor says.  We know our bodies better than anyone.

    Best of luck

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.