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RA meds have been stopped

lizzie7nelizzie7ne Posts: 154
edited 16. Mar 2010, 19:31 in Living with Arthritis archive
Been having a bit of a difficult time lately, have felt really fatigued and still got knee pain but my blood tests show my inflamatory markers are normal so its been frustrating.

Been feeling a bit breathless last few weeks, thought it was due to the terrible fatigue I have been having. Developed a funny kind of cough earlier in the week, so as the Methotrexate book says we need to report such things rang the Rheum helpline, the nurse had a word with the Consultant who says I have to stop Methotrexate and Leflunomide cos the meds may be affecting my lung function, so I have done so. I have to have a chest Xray next week also a Lung Function test then have been given an appointment with the Rheum on the 15th to hopefully sort everything out. Bit worried about stopping the meds hope it doesnt trigger Arthur into action, but cant do anything else but stop them

lizzie

Comments

  • woodbonwoodbon Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello,
    I'm sorry that you are feeling so tired and unwell and of course, worried. I can understand a bit what you'r going through at the moment, although I know I have OA, I'm having to have lots of tests and visits to consultants, to get a better idea of the diagnosis.

    I expect the worry is increasing the tiredness, or at least not helping, and waiting is just a pain in the bum! :oops: I'm no good at waiting, and you should see the lists of things I think I might have! :oops:

    Once you get all this sorted, I'm sure that you'll be given the medication that suits you the best and feel much better. Meanwhile, try and rest and not worry too much, I really do know its easier to say than to do. The rhuemmy said to me last week, "Relax, rest and let me do the worrying and detective work, thats my job, yours is to rest and not worry and that'll make you feel less tired".

    Take care, and look after yourself.
    Lots of love Sue xx
  • suzstersuzster Posts: 1,328
    edited 30. Nov -1, 00:00
    lizzie,
    sorry you are struggling. but i'm sure when you see the rheumy they'll get things sorted. it's so hard not to worry but please try to rest and recover.
    good luck for the 15th (i think thats the date you said!)
    sue
  • jojo12jojo12 Posts: 30
    edited 30. Nov -1, 00:00
    Hello, I too have had Methotrexate suspended following a cough and breathing problems and this week had a lung scan and soon to have breathing tests. No cough now so it will be interesting if I get an all clear and start the Methotrexate again and the cough returns. At least will know it's the meds. There are bugs out there affecting lungs/breathing so I am trying to be positive A friend of mine not on any meds had all the tests and it was just a virus. Hope it helps you to know that I am going through the same as you. :)
  • lizzie7nelizzie7ne Posts: 154
    edited 30. Nov -1, 00:00
    Hi Jojo, let me know how you get on with your tests. How long have you been off your meds?


    lizzie
  • jenzie06jenzie06 Posts: 708
    edited 30. Nov -1, 00:00
    Sorry to hear you've not been feeling well. With regard to the leflunomide, it doesn't leave your body for a fair while so you should be ok til the 15th but the MXT does leave it quicker.
    When I was on Leflunomide I developed glandular fever and whooping cough at the same time. My liver couldn't cope and became inflamed. I stopped the Leflunomide for a few months until I got over everything (the whooping cough lasted for four months) but then went back on it and I was ok.

    Hope you get things sorted.
  • WonkylegsWonkylegs Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Lizzie,

    sorry to hear about the cough and the having to stop the meds.

    just something to hopefully lessen the worry about missing the meds.

    Although the MTX is lost fairly quickly from our bodies, the Leflunomide isnt', so when I had to stop both of them, I suffered less than when I was on just the MTX, as there is a long period of time before you get the Leflunomide out of your system.

    I hope that you won't feel too bad without them both. Better to get it sorted than carry on and be worse, I would have thought.

    but I know how frustrating it is, so sending you hugs ((((((((())))))))))
  • jojo12jojo12 Posts: 30
    edited 30. Nov -1, 00:00
    lizzie7ne wrote:
    Hi Jojo, let me know how you get on with your tests. How long have you been off your meds?


    lizzie
    hi, Had the lung scan last week and next week will have the breathing tests , so I guess I will get the results sometime after that. So far this year, have only had 3 Methojects due to feeling unwell with a nasty cough. If I get the all clear assume that I will be back on it. Still taking Sulphasazine and Naproxon. Also so far, not missing the Methoject! :?:
  • frogmortonfrogmorton Posts: 26,211 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Lizzie

    i will cross my fingers that
    1. the tests come back all clear and

    2. that you dont get an adverse reaction to coming off the meds

    Good luck - yo are very wise

    Love

    Toni x
    Love

    Toni xxx
  • nuttynananuttynana Posts: 44
    edited 30. Nov -1, 00:00
    Hi Lizzie

    Sounds like we are encountering similar things. I have been off work for 5 weeks mainly through fatigue and generalised aching joints. The rhuemy clinic stopped the Humira firstly and then in the last 10/15 days developed a cough and had trouble breathing so now MTX stopped. Had x-ray Fri and waiting for the results. It is so frustrating - am taking inhalers for the breathing but not really getting much in the way of relief. GP is being really supportive but gets frustrated that he is not able to find a reason. Like you I am worried that Arthur will leap into action as not on the MTX and no anti TNF either... Hubby gets very anxious when I struggle for breath - this disease is so tiring and there is no pattern for what happens next!!!

    Good luck - and keep us posted on how things progress.
    My thoughts are with you.

    Hazel x
  • lizzie7nelizzie7ne Posts: 154
    edited 30. Nov -1, 00:00
    Hi Well I have had the chest xray (dont know result yet), having the lung function test this Thursday, then Rheumy appointment on Monday. Had no Methotrexate for two weeks now (and no leflunomide for a week - was a bit naughty took the leflunomide for a bit longer). Starting to feel quite awful now, flu like symptoms, fatigue and my joints are acting up. Had my regular blood tests done on Monday and I rang the Rheumy nurse today and she says the inflamatory markers have risen.
    lizzie
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Lizzie,

    Oh flower I really hope your Rumo will be able to sort it for you. Sending a ((( ))) and a ton of empathy cus I had to come off sulfa cus of the reaction I was having to it and boy do I feel rough..... I see my Rumo the end of this month and like you am finding it hard to just wait it out..... Another ((( ))) and a hope your soon sorted. Cris x
  • jojo12jojo12 Posts: 30
    edited 30. Nov -1, 00:00
    Hi Lizzy. How did the breathing tests go? I had mine this wednesday so now all tests are complete but don't know the results yet. Still of the Mtx and only had three injections so far this year. Beginning to stiffen up but generally not too bad. Hope you are feeling ok?
  • lizzie7nelizzie7ne Posts: 154
    edited 30. Nov -1, 00:00
    Hi everyone, thanks for your goodwishes. Saw my Rheum yesterday and he said my lung function test was normal and my chest xray clear, so they dont know why I was feeling like I was but I am feeling ok now and if it happens again I am straight to my GP.
    So Rheum has put me back on to Methotrexate and Leflunomide and had my first dose of MTX for three weeks last night and have felt yucky today. Also got a steroid injection into my knee and told to rest it so that has been easy today as felt tired due to the MTX last night.

    lizzie
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