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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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  • Lisa_Batts
    Lisa_Batts

    Posted

    Sorry... Replying to continue the conversation. It is life threatening and has led to fatalities. Please keep yourselves safe if you are unsure of the advice you are given
  • Leeha
    Leeha Lisa_Batts

    Posted

    Hi Lisa - I know exactly what you mean. I have Crohn's Disease and so many Dr's now. I have a GI - a Dermatologist due to inflamation on my hands and feet resulting in 7 months of blisters and them then popping and peeling - I have a Naturopathic Dr to treat me with herbs and injections to balance the harm the Methotrexate does to my kidney and liver and my GP. The GI prescribes all these harsh meds to you and then doesn't follow up with the exception of bloodwork every 2 months. So I understand when you say you feel scared and alone. Have you tried seeking out Naturopathic treatment?

    Also, have you talked to the Pharmasist about combining medications? They are sometimes more helpful than the Doctors are.

    • Lisa_Batts
      Lisa_Batts Leeha

      Posted

      Hi Leeha. I have got some natural treatments here which my friend sent to me but I have been advised not to use them at the moment as the MTX has brought me out in ulcers. I too have problems with sores all over my hands and my knees hands knuckles etc keep going black. I find it shocking that this is a heavy duty drug and you are sent away with it with barely any help. Also I have neuropathies and a blood disorder so I have gone from about 8 pills a day to approximately 25. I am lucky to be alive today and my emotions are swinging as you can imagine. Thank you for replying. Although I don't wish anybody to have to go through this there is comfort in knowing it's not just me. I swear my doctor almost rolls her eyes when I go in. I have no confidence in them anymore. You are right. The pharmacist is excellent but he doesn't actually prescribe medication and when the doctor does it is natural to trust them. I wish you well on your journey 😊
    • schar1111
      schar1111 Leeha

      Posted

      Establishing a relationship with your pharmacist is an important course of action....I agree, they are more astute about drug interactions than doctors.  And a good pharmacist is vigillent and stays on top of the drugs you take and will always notify you when there's a possible conflict.  Most of us are on multiple drugs and this can be an issue.
    • Leeha
      Leeha Lisa_Batts

      Posted

      A non-invasive way to help your kidneys and liver is taking Marshmellow Root as well as Milk Thistle. I wish you well Lisa.
    • Lisa_Batts
      Lisa_Batts schar1111

      Posted

      I agree and thank you. My pharmacist is well aware of the meds I am on. I'd actually spoken to him the morning before about something and his advice was spot on. Ultimately though he was the one who fulfilled the prescription 😳
    • Lisa_Batts
      Lisa_Batts Leeha

      Posted

      Thank you. I have written them both down and will speak with my pharmacist. Thank you for taking the time to help. I wish you well too 😊
  • kate06315
    kate06315 Lisa_Batts

    Posted

    Lisa I'm horrified to hear this - it sounds like a case of professional misconduct and if I were you I would make an official complaint - this would help to ensure other patients didn't have the terrible experience you've endured.  I was told some time ago that I'm allergic to Trimethoprim but I'm still not sure whether I actually have an allergy or whether it's because I was prescribed MTX.  What I do know is that I developed pneumonia in August and was dangerously I'll, I spent a week and a half in hospital, much of it on a high dependency ward. Initially they thought it had been viral as my lung function tests a month later were excellent. So I was put back on MTX at a low dose, and guess what? The December lung function tests showed significant deterioration. So they said stop MTX as it seems it's the culprit. And now I'm told I have no iron, which could be yet another autoimmune disease (pernicious or hemolytic anaemia)... I'm now wondering if MTX could be responsible for this too.  I don't get to see my rheumatologist until 23 Feb, and I'm not feeling very well at all. I find that any urine infection type symptoms are always the precursor to something horrible going wrong, so I do take notice if they arise, and I think everyone who has autoimmune disease should be alert to this. 

    I really hope you feel better soon - take it easy and rest as much as possible, and stay strong - you can get through this. Oh, and by the way, you're not being a nuisance - doctors have a job to do and they are paid well for it....mention that to yours!!!!! Good luck ️xxx

    • Lisa_Batts
      Lisa_Batts kate06315

      Posted

      Dear Kate bless you. I too am horrified and assure you when I feel better and find the strength I shall be kicking butt. All I want is to have one doctor who I can see on a regular basis, or phone when problems arise. Nobody wants to take responsibility and I am frightened. Thank you for letting me know about the urine infections. I am prone to them and shall be going to A&E in future when I get one. I will not have people playing with my life whilst I am fighting daily to get through with a smile. Which I even managed last night in the hospital bed when I got emotional, pulled a tissue from my handbag and blew my nose on a sanitary towel! I believe a positive attitude goes a long way but I seem to have lost that for the moment. Mind you I feel very ill. I am resting as I can't do anything else at the moment. You are right about the doctors being paid to do this and how they can make a patient who is already going through Hell feel like a nuisance is beyond my understanding.

      Thank you for taking the time to reply and I am sending sunshine thoughts your way and wish you well 😊☀️ X

    • Leeha
      Leeha Lisa_Batts

      Posted

      I am just curious to know if you are both going for regular blood work.
    • kate06315
      kate06315 Leeha

      Posted

      Yes, Leeha, I also have my bloods tested fortnightly 😀
    • kate06315
      kate06315 Lisa_Batts

      Posted

      Thank you for the sunshine thoughts Lisa, I'm sending some back to you too ☀️☀️☀️ I'm glad to hear that you're going to raise hell over your mistreatment - you go for it, girl, when you're up to a fight! I keep meticulous records because my memory has become very poor, so if I write everything down I've got a record of who said/did what and when. The only thing is, this system fails when I'm feeling very poorly as all I can do then is sleep. But when I'm fairly stable, I try to keep my records up to date, just in case I need to confront anyone! Really hoping you'll feel a bit better soon my dear, thinking of you ️xxx️xxx
    • mrsmop
      mrsmop kate06315

      Posted

      I had mine done weekly to begin with but I was seeing my Dermatologist weekly then too, I'm now down to monthly and seeing him 2 monthly unless anything goes wrong.
    • kate06315
      kate06315 mrsmop

      Posted

      The longest gap between blood tests I've had is a month...I do find it reassuring so I don't mind. Maybe that's why my iron levels have plummeted - they've taken all my blood lol!!!
    • Lisa_Batts
      Lisa_Batts kate06315

      Posted

      ☀️☀️☀️ thank you Kate. Trust me when I can ever get off the couch I shall be requesting my medical records to document this all. I do keep records but like you sometimes I don't have the energy to keep them up. It's terrible that with all we have to go through we have to fight the system too. Thinking of you too and hoping your week ahead will be a good one 😊 xxx
    • kate06315
      kate06315 Lisa_Batts

      Posted

      You're welcome Lisa 😀 I requested my medical records last year and I was very fortunate I think because they didn't charge me  - a friend told me that some NHS Trusts do try to charge but if you're firm they give in! Lucky for me they didn't even mention charges and I duly got a massive package via parcelforce! I still haven't read all of them though! My husband often says "what would I do if you got too sick to challenge the doctors and ask questions?" And there's no reply to that one really. Keep positive Lisa, thinking of you xxx 
    • Lisa_Batts
      Lisa_Batts kate06315

      Posted

      I am absolutely sure that they will charge me. They charge me for copies of my blood photocopies! 🙈🙈 I know in my head where it all started going wrong so I only need to work from there for now. Once I recover from this I will find strength to challenge everything which has gone wrong and hopefully with a complaint on record that I could have died they will be extra vigilant. I'm a very positive person although I haven't felt it lately but I will again don't you worry. It is frightening to think we may get too sick to take control of our own treatment but you stay positive too. A positive mind helps the body. I am sure of it. Keep smiling and enjoy the little things xxx
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