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DR COMPLACENT ABOUT MTX?

Posted , 3 users are following.

Lisa_Batts
Lisa_Batts

Hi all

I know I've not been on here for ages but I've been having so many health problems myself I don't know where to start

End March severe abdominal pain and feeling like I have a urine infection... 6 samples now have proved negative

Beginning of April stomach distending so much it stretches the skin

In the meanwhile I had a colposcopy due to high dyskaryosis and had the bad cells removed and a biopsy done... Still awaiting results but not overly concerned as cervix looks healthy

Due to symptoms they suggested getting ruled out for ovarian cancer which I did

Stomach getting worse (been asked many times when it's due... I'm size 10/12!) also running a fever

Ultrasound on tummy done.. Conclusion full of gas which didn't surprise me as I have IBS but I'm in control of that... Was given meds to release gas

Nothing happened... Tummy swelling more, everyday. Change in bowel movements.. Stool sample clear.

Overall I have been running a fever (I run st 36.8 to 37 as a rule) I'm running st 37.4 to 37.8 for 7 weeks, tummy distending to the point it's giving me backache and can't get clothes on, extreme fatigue and more nauseous than usual

All this time I've been told to stay on MTX

Went to doctor this week.., he saw how distended my tummy is... High fever etc and has arranged for a 2 week turn around for a consultation for colonoscopy

My friend wisely suggested I contact my Rheumy but he was on holiday. Speaking at length with his secretary have written all the above down and posted to him and the secretary is going to take it straight to him next week

I'm scared, I'm tired and remember a time when ongoing symptoms like these on MTX would have you in an assessment unit.

Please has anybody got any advice or suffered anything like this.

Would you still be taking your MTX?

Thank you for your time

Lisa ??????

0 likes, 5 replies

5 Replies

  • mrsmop
    mrsmop Lisa_Batts

    Posted

    Hi Lisa, I'm sorry you are going through all of this.  I will email you, I still have your email address.

    I had different problems with MTX & stopped taking it.  You definitely need to talk to the prescriber & if that's your Rheumy, then that's who you need to see.

    Email winging its way to you shortly!

     

  • connie28112
    connie28112 Lisa_Batts

    Posted

    Lisa - I had severe stomach pains from methotrexate and switched my folic acid 5mg tablets for Leucovoric (folinic acid) - the latter is better metabolized by the body. It took care of 90% of my methotrexate side effects, esp relating to gas and stomach pain. Discuss with your rheumatologist. I have upper respiratory issues and and assessing whether to stay on metho or not. Not an easy decision. Good luck!
    • Lisa_Batts
      Lisa_Batts connie28112

      Posted

      Thank you Connie,

      I really appreciate you taking the time to reply and am taking a copy of this to discuss with my Rheumy.

      Nobody got back to me despite 3 phone calls as to whether to continue my MTX or not and maybe it's because I'm run down, have a fever and had some bad news today I'm so angry at the health system that they put us in this and then you can't get questions answered for love or money (well you probably could with money!)....

      7 weeks of unidentified fever and abdominal swelling (thank you for letting me know you suffered that...its put my mind at rest a bit) and left on MTX without an answer in sight.

      I really appreciate your help

      Have a good weekend

      Bless you

      ????

      Lisa x

    • connie28112
      connie28112 Lisa_Batts

      Posted

      Oh Lisa, you are right to be angry! You should not have to wait so long for a response. There was a spelling error in my response - leucovorin is the folinic acid supplement. Initially, I ended up at the emergency room with severe abdominal pains... and when I had a fever, my Rheumatologist told me to stop the methotrexate for 1 week. I don't know where you are located but I am in Montreal and I went to New York for a second opinion. As much as we respect our medical practitioners (and my Montréal Rheumy is very responsive!), it can be important to get a second opinion. This is your body and you know when something is wrong. I hope you find answers. Take good care,

      Connie

    • Lisa_Batts
      Lisa_Batts connie28112

      Posted

      Dear Connie

      I'm in the UK with an understaffed failing NHS.... That does not mean I accept this treatment.

      Thank you for the correction in spelling!!

      I have had to fight for so much since on the MTX... All the way. I even changed doctors to one who understood the drug more. He is usually so on the ball...

      You are right though. I know my own body, I know something is wrong .... I'm exhausted from being ill, exhausted from all the procedures I've had and exhausted of fighting. But it looks like I have some fighting ahead of me next week.

      I'm going to take the MTX tomorrow as nobody has told me not too...... If it makes my symptoms worse at least I will end up in hospital and have to be seen... I know that sounds drastic but my doctor said keep taking it so its on his head. If I end up in hospital at least I will get some rest and all the tests done that need doing.

      Thank you for saying I have a right to be angry.... Sometimes I feel I'm 'bothering' my doctors etc but they are 'bothered' anyway so one more won't hurt.

      I will be far happier if I get to talk with my Rheumy next week so fingers crossed.

      Again thank you for your kind words and taking the time to reply.

      I'm not a newbie to this drug and know from past experience that I've ended up in hospital for 10 days by letting things slide.

      I'm resting tomorrow and Sunday so I can find some fight for next week.

      Bless you again

      Lisa

      ??💐 X

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