Waiting some more

Just to let you know that I saw my Rheumy last Thursday. Apparently I have Methotrexate Pneumonitis which has caused the lung inflammation so I am off MTX permanently. He is also referring me to the Chest consultant at the N & N Hospital, Norwich for lung function tests and for the chest consultant to confirm his diagnosis and treatment. So I am on 40 mcg of Prednisolone daily to stop the breathlessness and I should feel better in about 2 weeks.

Don't know what they will put in the place of the MTX although I still have my Enbrel injection. Also had blood tests yesterday and an asthma check today and the Practice Nurse also did a lung function test which is normal for both the large and small airways so she has given me a copy to take to the hospital when I go so the chest man can do a comparison.

Am beginning not to be quite so breathless so the steroids are working. Apparently that is the standard treatment. Trying not to rush about too much as that sets it off as well but did go upstairs this afternoon without being breathless at the top so an improvement definitely. Feeling a bit more optimistic now.

LavendarLady x

20 Replies

  • Oh ll so sorry , I hope u feel better very soon xx

  • Bless You Hun, hope you stsrt to feel better, Rie x

  • Hello Lady

    One of the problems they have with MTX is to the lungs, hence the reason they have taken you of the medication.

    They will check you lungs several times before they decide what to do, They are looking after you

    Good Luck


  • Thanks Bob. I am having good treatment and my Rheumy does care. LL x

  • Oh your having a hard time of it.Hope you start feeling brighter soon xxx

  • Poor thing, but do try to rest a bit to give your body a chance to recover so take those stairs slowly. Hopefully the Enbrel will keep your RA at bay while they work out the next step. Polly

  • Hello LavendarLady,

    I'm really sorry to hear about your lung problems, I guess most of us are glad to be on MTX to help reduce pain and damage to our joints etc, but there are those nasty side effects.

    I've just written a blog myself about Enbrel and MTX because I'm on both like you. I've been on MTX for almost 3 years now and touch wood I've not had a problem with it, but will be glad to come off it eventually.

    I hope your lung problem will resolve itself, but do be careful with those stairs and take good care of yourself.

    How are you getting on with Enbrel ? June xx

  • Hi June, no problem with the Enbrel at all. Have been on it 3 1/2 years having been on Humira previously which brought me out in a rash so my Rheumy changed me over. It seems to help and if I get a flare up I just take a Nurofen and paracetemol to help control pain and inflammation. He does want me to think about Ritumixab but I don't think much will happen now until we get the lungs under control again. I was on MTX 5 years. LL x

  • Good morning LL, you are having a time of it aren't you. I must admit i worry about the side effects of MTX. At least LL they are taking great care of you. You take care my friend, Love Sylvia.xxxx

  • Thanks Sylvi, hope you are ok too. Love LL x

  • The breathlessness does get better when you come off the Mxt. My rheumy didn't believe me that it was the Mxt so had to go on it three times and each time it was dizziness and breathlessness. The first time it happened they thought it was a virus although the X-ray showed some lung inflammation. The next time they told me to get a lung function test but my breathing was so bad that they could not do it. By the time my breathing was ok I got a really bad cold and cough that lasted for about six weeks so by that time I was due to see my rheumy nurse who put me back on Mxt! After 5 weeks the breathlessness was. Back so now off permanently, at last! Glad to see your rheumy is a bit more clued up on it than mine was. Hope it all works out with the meds from now on.

  • Gosh,you really had a bad time. My Rheumy was on the ball and as soon as I told him about the breathlessness, he took me off the MTX immediately and now I will never go back on it. Thank Goodness. It was not a drug I liked at all. At least the lung function test yesterday was normal for my age, height and weight so will see what the chest doctor says as well. Feeling a bit shaky this morning and very tired still but hopefully that will pass as the steroids get to grip. Did feel rather put out that my Rheumy said in his letter to my GP it was COPD - I am certain it isn't and the practice nurse was doubtful as well as the lung function test was good. LL x

  • Hi LL, I'm glad your rheumy has done exactly the same as mine did when I developed pneumonitis.As I said before I recovered fairly speedily once on steroids, but it was quite a scary time as I'd never had breathing trouble before. He told me he'd never put me back on MTX (Thank goodness), and now am on Sulfa and Hydroxy and getting along fine.

    All the best


  • Thanks Carolyn. It is scary trying to breathe. Only time I have had problems before is with an asthma attack. I see the chest doctor on the 19th November. Practice Nurse has given me a copy of my lung function test to give to him. Just trying to get rest and not get too tired or overdo things at present which does make me breathless. Don't know yet what will happen for future meds. Will have to wait and see. LL x

  • Hi LL, Just wanted to say that I understand what you are going through as I have been there myself and its very scarey but hang in there as it will get better.

    I took a bad chest infection at the begining of the year and was finding it hard to breathe and had a constant cough.

    I was taken off MTX for 4 months as a CT scan showed up inflamation, scarring and nodules on my lungs. My lung function tests were not great either.

    I was given a steroid inhaler and another one to use during the day if needed.

    I went back on the MTX after the 4 months as another CT scan showed a lot of improvement on my lungs and I really did feel better.

    After 10 weeks back on the MTX I took another bad chest infection so it was decided to withdraw the MTX completely. So the last time I took MTX was in July this year.

    I had to increase the Sulpha and still take hydroxy but that is all at the moment.

    I seem to doing okayish but I do have the option to try Lef but have not started due to another problem with my stomach.

    Feeling breathless is very scarey so I hope you soon feel better.

    Mary x

  • Oh gosh LL, that is scary, I know. Not being able to breathe is just too scary. That is the one thing I have feared with all the chemicals I take..reading about all the other peoples side-effects, as I have been on these drugs longer by far than most. It does sound like you are in the best of hands, so keep on keeping on.

    Didn't you look into putting a chair lift on your stairway? Cheers <3

  • Don't think I am bad enough for a stair lift yet! LL x

  • That's good news!

  • Hi Lorann and Mary. Thanks for your support and thanks to everyone for theirs. It's so nice to know there are friends out there who care and it is much appreciated. Will let you know how I get on with the chest doctor on the 19th November and what he recommends. Will be seeing the Rheumy again on the 22nd November as well. Onwards and Upwards! Just wish I wasn't so tired. Love to all LL x

  • Sending hugs LL xxx ((( )))

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