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Methotrexate for RA: symptoms after taking meds

Posted , 5 users are following.

cheryl97458
cheryl97458

I've been on oral M since January 2017.  Have had abdominal symptoms for 48 hours after taking meds every week.  Has anyone had similar problems and discussed alternative dosing regimen with their Rheumatologist?  It's like a roller coaster effect.  Take pills->symptoms->relief and reduced joint pain->increasing joint pain->take meds.  Thanks for your help.

0 likes, 10 replies

10 Replies

  • Lisa_Batts
    Lisa_Batts cheryl97458

    Posted

    Hi Cheryl

    Firstly reading your 'roller coaster effect' hit home except for the increasing joint pain before taking meds. Now you've been on it for 6 months you shouldn't get that before taking it... it should 'last' the whole week and then some so it could be your dosage needs slightly increasing. Mention it to your rheumy next time you see them.

    Abdominal pains shouldn't be taken lightly but it depends where it is and what it feels like... I know that sounds vague but it's something you need to flag up with your rheumy asap. If it's a general pain he may prescribe Lanzoprozole (a stomach protector).

    I don't get that abdominal pain but the reason I felt I needed to reply to this is after having been on it for 2 years I started getting abdominal pain and bloating... when I say bloating I'm talking about looking 9 months pregnant.. the skin stretches so much it's shiny...... long story short they have found damage to my liver..... yet my blood tests show liver function normal. I am waiting further investigation but have had so many procedures that I'm having an MRCP this week...... it is all veering towards liver damage from MTX....... now before you panic my pain is specifically lower left abdomen and goes round to my back and slightly down my left leg.

    I don't want you to panic! The abdominal pain could just be a reaction you get from the MTX but I think you should get it flagged up ASAP.

    For anybody else reading this too, I am shocked that a medication which is wonderful (once I got used to the side effects) has probably damaged my liver yet my liver function blood tests are normal. To anybody else who is getting the above symptoms demand a CT scan of your liver. Because the only thing they can put it down to is MTX use I've also been off meds for 2 months with no substitute and am in full flare but can't get any meds until after the MRCP.

    Cheryl I'm sure this is not what is happening to you but don't take abdominal pain lightly.... just to be in the safe side.

    My rheumy is very difficult to get hold of but once I do get hold of him he is brilliant... if you have the same trouble I've found going to my doctor and getting him to e mail my rheumy I get a response within a week.

    Doctors do not (in my experience) have near enough education of this drug so always flag things up with your rheumy. My abdominal pains started the end of March and tests were only started mid June.

    I wish you luck and as I said I'm sure you simply need a stomach protector and your meds upped slightly to stop that joint pain before you take it. I just wanted to share my story to bang home 'do not be fobbed off by doctors, always take any symptoms to your Rheumy and take control of your illness and meds'..... fight for what you believe you need

    Good luck Cheryl

    Lisa

    ??🌻

    • cheryl97458
      cheryl97458 Lisa_Batts

      Posted

      Thanks so much.  I see my Dr. in about 3 weeks and will definitely discuss this.  I'll keep you posted and sure hope your liver recovers nicely.

      Cheryl

       

    • sunny25366
      sunny25366 Lisa_Batts

      Posted

      Lisa! Thank you so much for your candor! I can tell that something is not right but have normal LFTS so Ive been Under the false  perception that Im doing ok. Im going to make sure I get at the very least an ultrasound of my liver and kidneys. I think MTX is one of those crazy meds that can disguise the damage it does. It helps my symptoms (Lupus) BUT I am worried, my hair is starting to fall out slowly but surely. Thank you for posting.
    • Lisa_Batts
      Lisa_Batts cheryl97458

      Posted

      Hi Cheryl

      Sorry for delay... had my MRCP done to look at liver and awaiting results.

      Definitely flag up with your doctor... it's always better to be safe than sorry.

      MTX is a harsh drug and you know your own body. If something doesn't feel right... question it.

      Yes please keep me posted

      Lots of positive thoughts coming your way 😊??🌻

      Lisa

    • Lisa_Batts
      Lisa_Batts sunny25366

      Posted

      Hi Sunny

      I can't stress enough that we know our own bodies and MTX is not a drug to be taken lightly.... if you feel something is wrong .., then it should get checked out. As I said my liver function through blood tests were normal...

      Also I have far more faith in my rheumy than my doctor so anything you feel needs to be done/looked at.... kick butt! 🙈🙈

      I've had to fight all the way on this drug one way or another the first hurdle being my doctor giving me an antibiotic , Trimethoprin (sp?) which is fatal with MTX... it was just by chance my rheumy phoned and said my bloods showed infection and all proud I said "I know, I've already been put on Trimethoprim"...,, dead silence..... Lisa go to A&E now!! I can laugh now but it wasn't funny at the time I was in hospital for ten days! That's why I keep control in my meds and illnesses....oh and changed doctors!!!!

      Poor you, the hair loss can be such a big thing for us but if it's any comfort mine didn't do it for too long..... I had it cut into a really short bob when I felt the fall out had slowed down and thankfully it has grown back. I still have periods when I'm washing my hair and have to unblock the plug to let the water go down but it's thinning more than baldness. My advice on that would be to leave it alone as much as possible without washing it so it gets natural oils in. When you do wash it I've found (I know we can't advertise on here) but let's just say it is a more expensive shampoo and conditioner (although I always buy it on offer) and it's in a purple bottle called anti frizz miraculous recovery.... and using that has made a lot of difference for me.

      I wish you luck and sending positive thoughts

      ??🌻🌈

      Lisa

    • sunny25366
      sunny25366 Lisa_Batts

      Posted

      Hi Lisa! Thanks so much for the hair tip. I know what product you are talking about so I will try. Yes thank goodness you are on top of stuff, Some Doctors just take everything we go through so lightly because it doesnt personally affect THEM. Not all of them but a lot. Im going to review every med Im on TODAY thanks to you :0). It really helps to commiserate with people in the same boat. Thanks again and have a beautiful day. Its raining sideways here in Virginia lol.
    • Lisa_Batts
      Lisa_Batts sunny25366

      Posted

      Virginia! Morning y'all (sorry I'm in England 🙈😂😂wink

      Doctors don't take this drug seriously enough. After all it used to be used on its own to treat cancer so it has a chemo element to it, hence hair falling out, mouth ulcers etc. It still had the same side effects and in my opinion should be monitored far better than it is. If you are having problems with any other side effects let me know and I will try to help.

      There is an app you can download which you put all your meds in and it will show a triangle next to it.... if it's red it means one of your other drugs reacts with another and it will tell you which drugs and why.

      I'm not allowed to put the address on here and I will try to inbox it to you later.... although it is a UK based app.

      One thing I would say is you can 'over research' this drug until you scare yourself silly and your head is spinning!!

      It's good to have a good basic knowledge of it though... this site is excellent... but my advice would be if you don't feel right go to doctors. If you're not happy with the answer.... go to rheumy.

      When I changed doctors I told him my fears about this drug and he's usually pretty much on the ball..... if you feel unwell (as in slight fever, sore throats etc) what seems like an illness you would usually ignore.... one thing I was told and live by is get antibiotics and stop the MTX until they are finished. Don't forget the MTX knocks out your immune system so whilst in it we don't fight simple infections and our body needs help to fight that before you go back on it.

      I will try to send you that link later.... I've completely forgotten how to inbox privately so need to find out how and I've not had enough coffee yet!!!

      Enjoy your sideways rain ?? 😂😂 it's sunny sunny ?? here today... but it's England 8 am and anything could happen,

      Have a great day

      Keep positive..,, that does actually help

      Lisa

      ????🌻X

    • cheryl97458
      cheryl97458 Lisa_Batts

      Posted

      Thanks so much for continuing to help with what to watch for.  I always double check drug interactions online before I take any new med.  I also question my pharmacist.  Cheryl

       

  • Lisa_Batts
    Lisa_Batts cheryl97458

    Posted

    Sorry for delay again!!!  Sounds like you're on the ball with that.

    I hope things are improving for you

    Lisa 🌈??🌻

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