Chesty cough, breathlessness and steroids
Posted , 9 users are following.
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 !
0 likes, 13 replies
marva06257 Mikkib28
Posted
Mikkib28 marva06257
Posted
Doodles2008 Mikkib28
Posted
Mikkib28 Doodles2008
Posted
jennifer25546 Doodles2008
Posted
jan6648 Mikkib28
Posted
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.
Mikkib28 jan6648
Posted
jan6648 Mikkib28
Posted
jennifer25546 jan6648
Posted
Tr1957 Mikkib28
Posted
rdp75789 Mikkib28
Posted
(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
laurie2112 Mikkib28
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.
joshuapryce1987 Mikkib28
Posted
Try menthol sweets and cough medicines.