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All MTX patients should read this. I nearly died last night

Posted , 10 users are following.

Lisa_Batts
Lisa_Batts

My doctors say 'they don't manage my methotrexate my specialist does'. My specialist took 8 days to return my call. In the meantime I contracted a urine infection and was prescribed TRIMETHOPRIM by my doctor. The doctor would not actually speak with me herself but my questions were passed through reception. They make me feel like I am being a nuisance. By chance my specialist returned my call which I had made 8 days ago and I told him I was now on the above medication for a bladder infection. He told me to go to A&E immediately. This should never be prescribed with MTX. I had only taken 2 of the 6 when he phoned. I wonder if I finished the course whether I would even be here to write this. I have been told I will feel very unwell for some time. So please take care. It has frightened the life out if me that my doctor is 'disinterested' and my specialist took 8 days to phone back and on the basis of this I could have died. I feel very scared and alone and have no idea how to go forward but I am sharing my experience so that you are all aware that to mix these two drugs is life threaten

5 likes, 70 replies

70 Replies

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  • johnfs49
    johnfs49 Lisa_Batts

    Posted

    Your doctor should know from your notes what medications you are on as the hospital would have written to them.

    I always get a copy of any letter sent to my GP from the hospital.

    Think you need one of those no win fee solicitorstoget compensation from your GP who didn't do there job properly.

    • Lisa_Batts
      Lisa_Batts johnfs49

      Posted

      John don't! I'm still fuming.... They know I'm on MTX but I get no support from them. Apparently Trimethoprim with MTX is 'not in their guideline' book. As they keep telling me 'they are not responsible for my MTX, my specialist is.' I have a meeting with my doctor and the senior partners on Wednesday. 😊
    • Lisa_Batts
      Lisa_Batts

      Posted

      Hey John. Hope you are well... Managing to fish and walk the dog 😊 just to let you know the meeting at the doctors went well. They now have 'special measures' in place for me including my own secretary and they are contacting my rheumatologist so they have an open line to him. They will not take responsibility for nearly killing me as the medication is not listed in their interaction book. Of course I asked them 'but you have now made it clear to the medical board that it needs to be in there' to which I got blank looks. 'Ive already done that for you' said I, which I have! 😊😊 then moved swiftly on. What can I do? If it isn't in their guidelines not to mix the two medications then I have no grounds. Putting it behind me and moving forward because life is short and precious and I have chocolate! 😂😂😂 sending sunshine so you can get out ☀️☀️😊 Lisa
  • dot04702
    dot04702 Lisa_Batts

    Posted

    I have been on Methotrexate for a couple of years.  Since then I have had one infection after another.  Throat infections, chest infections, urinary tract infections.  It has reached a point where I have been unable to go out for weeks at a time.  When I saw my GP for my last infection he mentioned coming off methotrexate for these reasons.  I will have to wait to see my Rheumatologist and it will be interesting to see what he has to say.  I hope you soon get better Lisa.
    • johnfs49
      johnfs49 dot04702

      Posted

      Any medication that supresses the imune system will leave you open to more infections.

      You must take the Folic Acid which helps with most side effects.

      I also take 1000 mgs of slow release vitamin C nightly. I have found that the vitamin C helps a lot.

    • Lisa_Batts
      Lisa_Batts dot04702

      Posted

      You poor love Dot. I constantly have a high infection indicator but they say that the steroid (prednisone) plays a part in that. Everything in my being wants to scream take me off the MTX but I can't deny it is doing wonders for the psoriasis inflammatory RA. I have recently increased my folic acid to every day except MTX day and I think it is helping with the side effects. You could ask for that to be done in the meanwhile. The folic acid must be prescribed by the doctor and not over the counter. Apparently it is different stuff. Drinking a glass of cranberry juice a day helps with the urinary infections. Sending you some happy thoughts and positive vibes that things will ease for you 😊☀️
    • dot04702
      dot04702 johnfs49

      Posted

      I take Folic Acid 3 times a week John but I think I will try the Vitamin C as well.  Thank you.
    • dot04702
      dot04702 Lisa_Batts

      Posted

      Lisa I know you are going through a lot but here you are sympathising with the rest of us.  Bless you.  I do think it help when you can share problems with others, it helps to get things in perspective.  I am taking folic acid 3 times a week but I am going to discuss this with my doctor when I see him again.  Also, I am going to try the vitamin C which John suggested.  Happy thoughts back to you.
    • johnfs49
      johnfs49 dot04702

      Posted

      I am on 5 mgs of Folic Acid and was told to take it every day but the day i yake MTX.

      It was stressed to me that it was an important thing to take.

    • Lisa_Batts
      Lisa_Batts dot04702

      Posted

      😊😊 Thank you Dot. I think the doctors have very little time, sympathy or help for MTX patients and I was so scared when I first started taking it. I have had more useful info from this forum than from the doctors. There are some good kind people on here. I'm happy to pass on anything I have learnt on my journey and of course sympathise. We are in this together! I am currently sitting here with coconut oil rubbed into my scalp to see if it helps with hair loss. I will let you know. If it doesn't then I am just going to spend the day smelling like a bottle of Malibu! 😂😂 I certainly find comfort that I'm not alone in this. This affects our lives far more than the doctors give us credit for. The fact that you even feel well enough to post on here shows strength. The constant infections etc can make you lose heart but remember every day you try (even making a cuppa) shows you haven't given up. Lisa x
    • johnfs49
      johnfs49 Lisa_Batts

      Posted

      Lisa, i just had a thought after reading your latest post.

      All us MTX people should have a skin head party on coconut oil or Malibu.

      Your place or mine ?

      Rock on.

    • Lisa_Batts
      Lisa_Batts johnfs49

      Posted

      😂😂😂 genius idea! That made me laugh..... Being an old Goth (and I mean old!) my skinhead music is limited but I'm happy to sing! I don't drink anyway so that is one thing I don't worry about on the MTX But I do worry people who are missing it may mistake me as a bottle of Malibu! Rocking on with you 😂😊
  • dot04702
    dot04702 Lisa_Batts

    Posted

    Hi John and Lisa, I like the idea of a MTX party.  We could put our pills in a jar with a lid and rattle them while we are dancing.  Oh just a minute, don't think I could do much dancing but I can dream.
    • Lisa_Batts
      Lisa_Batts dot04702

      Posted

      😂😂😂 Dot we could raffle the pills rather than rattle them... You know like at fairs when they do 'guess how many jelly beans are in a jar' and make lots of money by holding MTX parties all over, club it together and all move to somewhere hot. Caribbean beach. I think that would be a great idea!

      You know you can dance sitting or laying down right? I do! Lisa x keep positive 😊☀️

    • mrsmop
      mrsmop dot04702

      Posted

      Dancing,  I've heard of that!

      You're right, Dot, dreaming is much more realistic!

       

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