Medication stopped

Well my methotrexate was stopped my sores on my legs are starting to heal . But now I'm deteriorating struggling with pain can't breath properly it hurts so much . I'm to restart methotrexate a week today I don't know what to do I can't stand the pain in my chest can't lay down to sleep feels like a ton of bricks on my chest . Can't walk far or bend down .worried when starting methotrexate again that I'm going to get sores again . Just feeling rubbish I just wish the Dr's can say here take this it will all go away. X

16 Replies

  • Now that would be a wonderful day!🍾

    So sorry to hear you are feeling so poorly Charmaine. You poor thing.

    If its not one thing its another with this ...... condition.

    You are not alone. We all understand and support you. Can you not see your doc or GP for more support advice and pain meds before next week?

    I think you do need to see someone especially as breathing problems can be so distressing and can get into a vicious circle.

    Please take great care. Keep warm. Soft hugs


  • I saw my gp today he listened to my chest which is all clear . He could see that I had got worse but he can't give me anything as it's my specialist deals with the medication. It feels just like before when lupus was causing inflammation around my lung gp said if it gets worse go to a& e great hate this idea .x

  • I understand Charmaine. I do. But if I could turn back time, Id be at a&e with the awful pain I had in Feb, not waiting two weeks for a dismissive young smug girl to just feed me painkillers and offer no proper exam or investigations.

    I thought I knew my body. Knew it was not a heart attack... but I am no doc and did not know what else can go wrong and the symptoms that they cause. I believe now that I had acute pancreatitis. Now I may have coeliacs... connected? Who knows but I am ill. I have felt terribly ill, recently and now a gastro hears me. Had camera down, barium swallow, biopsies of stomach etc but not looking for coeliacs. Go away. Still suffering. Now I have antibody test and ct coming cos my liver specialist listened. I wont hesitate again if in such distress.

    Did your doc rule out pluerisy? They have more tests at hospital, better analgesia.

    Not my decision, but if you are that worried... Have you rung the NHS advice line? Ive used them, they are good. Will even advise 999 if they think it necessary.Otherwise, try to calm yourself and lessen your stress. Have a warm bath. Get warm. Try to sleep. New day tomorrow.

    I will be thinking of you

    Take care


  • Thanks going to phone specialist nurse if no joy my husband said he is taking me a& e as I sound terrible through the night & he's gettin worried about me .x

  • Dear Charmaine, I know how you feel. it's always a tricky balance. My doc is always there to see if there are other options to regain balance and keep the inflamations down. Contact your doc and discuss whether there is another combination of meds to help you keep things in hand and make you feel better. Good luck!

  • I'm going to phone the specialist nurse hopefully she can get something done .x

  • Hi I've started methotrexate but the tablet form can they not give you those rather than the injections?

  • I started on tablets before injections I couldnt cope with the nausea & vomiting. X

  • hi charmaine i have the tablet form and was sick every time and felt sick all day and then the toilet , but my consultant gave me domperidone that was 6 years ago now try asking for another immunesuppressant not everyone gets on with mtx also are u on any abtimaliarias? sending spoonsx

  • Hi they tried anti sickness with tablet methotrexate. I've been on antimalarials over the last few years &tried many immune suppressant 6 years ago I had cyclosimide which helped but only for 2 yrs before it started flaring again .x

  • Are u in the uk hun??

  • Hi yes in Notts x

  • Sorry to hear this x

    These are the exact same symptoms I get with my lupus. With me it is caused by pericarditis and serositis. It is very painful, I really feel for you :(

    Do go to A&E if you get no joy because a few years ago when it was really bad I had a pleural effusion (fluid around the lung). I had to stay in hospital a few days and it was this which led to my diagnosis!

    Can you not ring your specialist directly? Mine always tells me to ring if I am poorly and he sees me very quickly. I have to go through his secretary. Maybe you could ring your hospital and ask to be put through to your specialists secretary to pass a message on?

    Whatever happens I hope you get seen soon and get some relief because it is horrible xxxx

  • Thanks I phone the help line the nurses will phone back in 48 hrs so hopefully tomorrow x

  • Hope they phone you in the morning! x

  • Nurse phoned if I'm having problems breathing my gp should deal with it & they can't see its my lupus stopping the meds wouldn't cause this that quickly .I did have a better sleep last night so I see how I go tonight x

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