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Methotrexate

Posted , 7 users are following.

june_85450
june_85450

My husband recently passed away after having rheumatoid lung disease a nd arthritis it happened so quickly everyone was shocked. I believe methotrexate should have been stopped earlier this year when lung function tests were showing big deterioration. Anyone else experienced this?

0 likes, 17 replies

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  • sukes
    sukes june_85450

    Posted

    I'm not able to comment on medication June, but I am deeply sorry to hear that your husband recently passed away.  Big Hugs x

  • cindy52759
    cindy52759 june_85450

    Posted

    Oh June, I am so sorry for your loss!  I have heard others have problems with their lungs with RA and the lining around their heart.  Are they saying he died due to complications from RA or did he have lung disease?
  • Paula2212
    Paula2212 june_85450

    Posted

    Dear June.

     Though my dear mum suffers with RA, I'm not expert enough to share thoughts on your late husbands experience. I just wanted to say how sorry I was to read about your loss as it's a horrid disease and I feel for you so much. Thinking of you.

     

  • carol303055
    carol303055 june_85450

    Posted

    Hi June. So sorry to hear your sad news. I started with symptoms of lung problems early 2016 due to methotrexate although I also had some nasty chest infections in the spring.  A CT lung scan in June showed early fibrosis which they didn’t know if it was due to the mtx or scarring from the chest infection (possibly a combination of both?) but by January 2017 CT scan was ‘significantly worse’ and mtx stopped. Since then my chest has improved although not back to normal. I have never smoked.  I had to use some of my contacts to get referred to a respiratory consultant as my  Chest x ray was ‘clear’ as were my lungs but I knew I wasn’t right.  I can’t say I wasn’t told it was a risk but I was quite shocked by the progression to significant deterioration in 6 months. It scared me and I suspect you’ve had a terrible time and it must still be very raw.   I’m so sorry.  Carol x 
    • Paula2212
      Paula2212 carol303055

      Posted

      Hi Carol.

      just reading your reply to June and wondered, do you mind me asking how long had you been on MXT when your lung problem she started? I was wondering if the lung risks increase with time or if it's just patient specific to every individual?

      Thanks so much and I wish you well too.

      Paula.

    • cindy52759
      cindy52759 carol303055

      Posted

      Hi Carol, I too would like to know how long you have been on mtx.  I've been on it for only 4 years but do they say the longer you are on it, the better your risk to having lung issues? 

    • carol303055
      carol303055 cindy52759

      Posted

      Hi Cindy and Paula, I was first diagnosed with psoriatic arthritis in 2012 and started on mtx shortly afterwards.  I’m not at home at the moment so I’m not exactly sure  but it’s about right.  My first symptom was a silly persistent irritating cough.  I even thought it might be just a habit I’d got into. There you go.  Are you having problems? Carol
    • cherylnanny
      cherylnanny Paula2212

      Posted

      Hi Paula. I was taken off MXT after 12 months. I was having monthly blood tests to check for changes. The marker which affects liver function shot up all at once. I came of it and have been fine on Etanercept. Also, I ask for a copy of my readings every time to monitor myself. I presume that if my readings stay within their 'normal' range and I feel ok, then all is well. It's easy to learn what each reading relates to if you ask someone who knows. Luckily my daughter is a phlebotomist. Wishing you well. x

    • Paula2212
      Paula2212 carol303055

      Posted

      Thanks Carol.

      it all seems so very individual doesn't it? I was asking for my mum whom I worry constantly about. She was diagnosed with Sero positive RA about 2 and a half years ago now and started on pred and then MXT even though the Consultant said it wasn't usual at her age ( then 83 now 85 ). She already had a degree of COPD and is more breathless now than she was but that isn't necessarily MXT related of course. Since starting MXT her bloods went awry once and the nurse suggested check the next nonth and they had returned to normal so MXT continues. I just worry about mums deteriorating health but realise age isn't going to help at this stage. 

      Wishing you wel Carol.

    • Paula2212
      Paula2212 cherylnanny

      Posted

      Thanks Cheryl. 

      Hoping Etanercept is working ok for you now.

      best of luck with getting the right mess for you.

      paula.

      x

  • Maxwell_747
    Maxwell_747 june_85450

    Posted

    Dear June so sorry to here about your husband , I will have a go at telling you what happened to me i was on Methotrexate for two month's i was coughing so badly i rang up the doctors and the RA help line at the hospital they said stop them in the end but i had to wait another to 2 months for a appointment at the hospital my own doctor did not have a clue then they found out that my lungs had developed infection well in the end they got that cleaned up but that was not the end , months past and they decided to x ray my lungs i ask my consultant why was this necessary he replied scaring on the body organs   i was terrified waiting to fined out the results in the end they where OK that is what i was told , now this happened again will the sulfasalazine and Hydroxychiooroquine lungs infection and this time they on the ball got me to hospital almost straight away as i say i did not after wait months for an appointment and again more xrays in case of damage due to the medication i was taking for RA i must stress this does not happen to a lot of people but it does happen , Again June im so sorry to here about your husband i lost my son not so long ago i got tears in my eyes now writing this my best wishes goes out to you and your family June from Maxwell PS if you want to talk about the medication or anything keep in touch . 

  • cindy52759
    cindy52759 june_85450

    Posted

    It's sad what these drugs do to us but unfortunately for some of us, it is the only thing that gets us out of bed.  And I wonder why some have such bad reactions to these drugs.  I have been lucky, mtx doesn't bother me, no coughs, no lung infections, no side effects so far and I have been on it for 4 years.  Now down the road, it may happen.  I'm so sorry for all of you and what you are going through.  I count my blessings that the mtx and the remacade infusions work for me.  I have my blood work done every two months and so far so good.  Hang in there guys and I hope things get better for you all.

    • carol303055
      carol303055 cindy52759

      Posted

      Hi Cindy, yes, these drugs are pretty toxic. I was absolutely fine for the first couple of years. I am a nurse and worked in hospital, mainly on cardiac and medical wards therefore exposed to a lot of infection but no problems. Then I had a knee replacement and everything went pear shaped. Especially my chest. That’s when I called on a specialist nurse friend in respiratory medicine. Thank goodness I did. Chest x ray and listening to my chest was simply inadequate and my GP, who has been very good, well this was outside his experience.  I rarely give advice on this forum but I would say to anyone if you feel something is wrong be persistent and assertive.  You do know your own body.  And these drugs are toxic. We take them because we feel we have little choice.  Many have been around for decades. I would love to see more research in the same way there is for heart disease and cancers but we are a way off that yet.  Anyway,  I’m sorry if I’ve gone on. Ironically, I’m off to a cardiac support group tonight listening to a professor talking about research in cardiology!  Best wishes everyone. Hang on in there. Carol x
    • Maxwell_747
      Maxwell_747 carol303055

      Posted

      Dear Carol i agree with everything you say the drugs we take or toxic and i 2 had a total knee replacement and guess what it started to go pear shaped for me , when i was diagnosed with RA they said it was possible it starts because of the shock of my son dying my total knee replacement was done a year before my son's death and i was telling them right from the start my knee was not right it felt like and still does that someone is pouring boiling hot water over my knee so they performed another little op to find out the cause Chronic inflammation in the tissue surrounding the new knee so my knee consultant agreed with the other RA consultant it was RA but never once did any of the consultant's said it was because of the shock i had losing a part of my body and being exposed to a foreign parts in my body system which is anther option it could have been , now my hip the other knee my spine and almost every joint is being attacked , on Leflunomide now with Prednisolone by the way metherate is the cheapest drug they try on you first some times it works and other times it don't when it don't you move on up to ones with better results and so on until you get to the dearer ones ,. My goes out to you all Maxwell .

    • Maxwell_747
      Maxwell_747

      Posted

      My last message should have read my heart goes out to you all my mind is not thinking straight at the moment , Again so so sorry June to here about your Husband its really hard i know 14 months ago my son died i sit and cry every day my tears have almost dried up i try and deal with it in my own way if you have a good family or friends it help think of you Maxwell .   
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