Newbie with Sarcoidosis

Hi everyone

Thought I might introduce myself as for some strange reason I've only just found this forum.

My name is Marie and I was diagnosed with Sarcoidosis in April 2011. My lungs have been damaged so much that they consider that I will need a lung transplant eventually. I've been on pred and azathioprine since then and I was also put on azithromycin earlier this year. I feel better now than I have for years.

I live a fairly full normal life. I work full time (they have been fantastic) and I still get to travel and watch my beloved football. I suppose I'm a pretty upbeat sort of person despite not knowing what the future may bring. I cannot fault the NHS they have been fantastic.

So that's me and my story. This looks like a great place to be.

17 Replies

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  • Hi and welcome. Val

  • welcome xx

  • Hi MarieWF

    Welcome - I am a newbie to the site and have found it really helpful. I have felt very alone at times and I now have support just by being a member and reading others' good and bad stories. I am on similar medication to you - pred, mycophenelate (immune suppresent), azithromycin. I am also on alendronic acid and calcium to combat the side effects of the steroids - are you on these as well?

    What hospital are you under?

  • Oh yes I am on the evil Alendronic Acid - I hate Saturday mornings! And calcium too. Azapriothine is my immunosuppressant. Do you have sarcoidosis?

    I see consultants at the Cumberland Infirmary and the Freeman at Newcastle.

  • You are right about alendronic acid being evil. It was prescribed for me, but I only used it once. I found the Save Our Bones programme and discovered why it was so bad...it does more harm than good. Good articles on there...check it out.

  • I hate Saturday mornings as well - having to wait for my first cup of tea! No I have Rheumatoid Arthiritis which caused Interstiital Lung Disease / Idiopathic Pulmory Fibrosis (never really understand the difference). It was further complicated by a reaction to Humira which I was given to help combat the RA.

    I see consultants at PRUH, Brompton and Harefield

  • Yep that first cup of tea...

    I've got pulmonary fibrosis caused by the sarc. They are managing to keep it stable at the moment. I see other people and I do count my blessings. I think the Brompton specialises is Sarcoidosis but it's not somewhere I have considered going but I know it's very popular.

    Do your drugs keep things on an even keel for you?

  • Difficult to know what I would be like off the drugs. After my bad reaction to Humira I had to be admitted to hospital and put on O2 - that was 5 years ago. I was referred to the Brompton by my local hospital and they started the pred and mycophenalate to try and halt the disease progression. I was managing ok however feel as if I have become a lot more breathless the last 6 months. I went back to the Harefield for another assessment in May (the last one, 2 years ago, came out as being too well (bit of a joke)). They have agreed in principle to put me on the list following another consultation in September. I just need to get some strength back so have started exercising more.

  • I haven't had my assessment yet as I'm a bit of a porker so need to reduce my BMI. I've had pre-assessment stuff done like bone density scans and echocardiograms etc.

    What's assessment like? I know eventually I will need to go through it. I keep thinking that if I can stay as I am then I wouldn't want a transplant.

  • Hi Marie, Had my assesment at the Freeman Hospital six months ago. I had to stay in for four days for the tests. You can go out of the hospital at night if you want for a meal etc. You will see the transplant coordinator who will give you lots of info and give you time to think of questions to ask. You will also meet the hospital Social worker who will give you advice on benefits you are entitled to. On the last day you have a meeting will all the team including the surgeon and he tells you what they have decided. In my case I was a suitable candidate but too fit to go on the list. I was asked to come back in three months, on that visit I only stayed in overnight. Got the same result so back again in three months. I'm quite happy to keep doing this as my quality of life is not too bad at the moment although I have had to finish work. Don't know where your assesment will be but I can tell you the Team at the Freeman are great. By the way, welcome to the forum :)

    Best wishes,

    Ron

  • They think my sarcoidosis has burned itself out however I am aware that it can come back but would like to think if a transplant wasn't possibe they wouldn't have suggested it. I suppose I will cross that bridge when I come to it.

  • Hi Marie,

    I am on this site as a carer for my husband Peter who has had sarcoidosis for 21 years now. He has had many ups and downs and was diagnosed with COPD (Bronchitis) 2 years ago. On the whole Peter has received excellent treatment on the NHS and we go once a year to the Royal Brompton in London for a general check and chat and they have been great too. It is good to hear that you are feeling well and long may that continue. This is a very supportive website and I love to read lots of comments and reply to a few. As a carer I sometimes feel a bit isolated but not any more. Hope you get lots out of the site and keep on being positive and happy. I am sure that Pete's mantra of positive mental attitude is what keeps him, and me, going. Have a good weekend. xxxxxx

  • Hi all, I to have sarcoidosis by it is laying low at the moment, have COPD as well and take the dreaded Alendronic Acid!!!! I have ostopenia and have fractures in my spine through the steroids, so I have to believe it is worth taking all the drugs I am on, It is a lonely place to be at times, can't really explain to people close to you how you feel, I hate putting the burden on them so try to keep most of it to myself.Great groups for us all on FB and this helps a lot. have a good weekend everyone.x

  • Hi all, My husband has lung sarcoid too. Our healthcare does not seem to be up to much, last apt the specialist wanted him to be a guinea pig for loads of new pills, but would not explain what they were fore, or side effects. we declined the drugs trial, and the specialist got all shirty with us.

    wish we had somewhere else to go :(

  • If you live in England there's always somewhere you can go I think as you can chooe . Anyway you should definitely try and get to the Brompton. Look into it and ask for a referral.

    Marie

  • The Brompton is unfortunately a hundred or so miles from us :( it is such a shame as i have heard some really good things about them. We are looking to see if we can get hold of / buy hubby a nebuliser, as we feel it may help him. When he is admitted it is the only thing that they ever really do any different to what we can at home. Will have to make apt witht he gp and discuss it.

  • I have a nebuliser - I'm not sure it's regularly prescribed for those of us with sarcoidosis but I nebulise with salbutamol every morning and I've found it makes a difference to me. Maybr its just psychological but im sure its helped. I'm 400 miles from Brompton but I'm not sure what they could do for me that's already being done.

    As for the nebuliser, don't buy one straight away speak to the practice nurse or respiratory nurse and ask for a trial.

    Good luck

    Marie x

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