Chesty cough, breathlessness and steroids

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I was diagnosed in May with wegeners granulomatosis , took a while but I was finally started on 50mg of prednisone about the beginning of November and in December my rheumatologist has started to bring the dose down due to starting methotrexate. However I feel as though I have a chesty cough all the time and whilst I can breath I feel my chest is very tight and slightly breathless. I phoned my doctor and also been to see him they said they are reluctant to give me antibiotics because of the steroids and methotrexate .Iv had this for about two weeks now , just wondering if the tight feeling is normal just with reading different effects of the steroids. Any help or advice would be great !

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  • Posted

    This sounds familiar I had symptoms like that so doc ordered a CT of my lungs!! It came back abnormal with glass (something) and had a bronchoscope done found nothing but did a culture of sample tissue and after several weeks received a call from the Pulmonologist and I have a lung infection called MAC which is a bacterial infection associated with compromised immune systems! I have Weggies and am currently being treated with Rituxin and now taking cocktail of drugs for the infection! I was feeling winded and coughing a bunch which led me to the doc!! Good luck!! Hope your issue is different, but worth checking into I think!!
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    • Posted

      Thanks for the reply, just now I'm still learning and still don't know what is a normal symptom or something worth noting. Good to hear your in remission !
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    • Posted

      Glass in lungs is asbestos. My step dad has this and he is on oxygen 24-7 for breathing. But I can't breathe due to wengers also but no glass. He is getting a lot of money from the glass particles. Just saying
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  • Posted

    Hi Mikki

    I avehad Wegener's f the lat 11 years and apart from four an a half years of sterods have had no treatment.  This was due to someone not reognising it when first ill.  I too had a very chesty cough and coughed up blood  After several  weeks I went to the doctor who referred me to a chest specialist.  I had CT scans and a bronchoscopy which showed abnormal cells in my lungs.  Again unfortunately due to the hospital losing some blood samples I was not treated. The cough eventually went of it's own accord. After seeing an unsympathetic rheumatologist I was discharged.  I eventually saw a rheumatolgist in London (Dr David D'Cruz) who finally diagnosed Wegener's but as I was in remission was not treated.    I only hope that one day eone will see me when I am suffering and I get some treatment.  Just hang on in there as things do  easier as time goes on.

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    • Posted

      Sounds as if you have been through a hell of a time ! I have had numerous chest X-rays and nothing is showing up. Just don't know it's one of those normal ways to feel with the WG, still learning about it myself. Hope remission continues for you !!
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    • Posted

      Thanks Mikki.  As I said you just have to put up with the odd ways that Weggie attacks you.  I have some lumps on my right hand at present and one symptom nobody ever tells you is that your short term memory lapses from time to time!! You don't say where you are from but if you are British try getting some financial help from the DWP.  Will take time but if you push it you could be entitled to some.  I get it for the care side but as I can walk more than 20 metres I don't get mobility.  My DLA is changing to PIP and it looks as if I am going to have to fight for it - the "caring" government's fault!!  Anyway good luck.
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    • Posted

      I was told this is what I have had in 2011 did one treatment of rixubtox and I still have all theses issues but when I go to Dr. He said remission. I do steroids due to stuff but he always.said I am good. Whatever I guess the wengers can kill me not the medicine
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  • Posted

    Ask to be put on rituximab its a aggressive treatment it worked wonders for me . It is recommended by the Mayo Clinic which is doing a gov't study (U.S.) and my Drs at Yale - bactrim is a anti- biotic good luck
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  • Posted

    I was diagnosed with WG in 2010. Suffered for two years before with extremely bad sinuous, even had surgery to clear all the drainage. I have a hole in the roof of my mouth

    (about the size of ones middle finger) -poetic right!

    I also have bone lose of my upper noise on one side and am experiencing eye problems. The strange thing is my blood test do not show I have WG but I have had all the symptoms. Now the good news is for the past eight months I have been taking Mycophenolate 500MG three times a day, Bactrim DS 800 daily, Metformin 500MG daily with only 10MG Prednisone daily and several other drugs. I have good energy (I walk two and a half miles five days a week) no drainage but eighty percent hearing loss left ear. I wake up every day glad to be seen.

    Hope this is help / Gods speed.

    Past- is experience Present-is knowledge Future- is a test

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  • Posted

    Hi everyone.  I"m in the US and have spent the past year getting the Wegener's --Lung only diagnosis.  It got missed on a Chest xray in 2015, I had 2 biopsies due to several lung "masses".  They say I have Wegener's.  I had to go to Baltimore's John's Hopkins Vasculitis Center for the official diagnosis because I have Zero Lab Values that fit this disease, like ANCA.  I'm ANCA negative, I'm also any other protein autoantibody binder negative (ie:proteinase 3 or myeloperoxidase values).  I'm being treated by a rheumatologist and many others but main point is I'm now finishing Rituxan treatment.  This is NOT FUN!!  I can't be followed by labs. The steroids are affecting me alot.  I can only be followed by chest CT's which take months to see if my masses have shrunk.   I'm getting very symptomatic with shortness of breath, asthma, loss of memory, jiont issues and just don't feel good.  Does anyone have experiencence like this??   I also just put on Bactrim antibiotic daily till god knows when.   Still feel lungs are tight, short of breath with groceries and dry coughing and it's not even allergy season here yet!!  When and how do you feel better with youre breathing?  This isn't working for me...max pulmonary meds too.  steroids are kiling my thyroid too.  I'm 54.

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