Does anyone have Pulmonary Fibrosis with Lupus?I've been diagnosed approx 2 years and no significant changes as yet

but obviously realise it can suddenly move into 2nd stage quickly.Just wondering how others cope with the uncertainty.I'm ashamed to say I'm feeling a little sorry for myself and just feel I'm waiting for the next stage.It doesn't always bother me but maybe it's because I'm a little under the weather.You know....the muscle weakness,stiffness and extreme tiredness.Just had to go recently for a medical to see if I'm capable of working.I was able to reach and do silly exercises so I'm waiting for the bombshell that notifies me that I've lost the Incapacity Benefit.Anxious with the wait and angry with the humiliation you have to go through to have to explain that you are letters from the consultant,hospital appointments and recent exploratory op should surely be enough?I'm at a loss as to know why.

10 Replies

  • hi midlife , i was tested for that last year and im told i have to have a nother test this year as i already have emphazema and copd :( as for incapacity its all changing to universal by 2015 any how so if you do win ull just be going through it again , however i had to appeal both dla and esa i submitted 10 years worth of medical history even though i have only been diagnoised for 3 years and 5 months, midlife you also HAVE to tell them alllll your side effects of the meds ur on as they dont have a clue at my first appeal the panel asked me who had painted my nails !!!! im like wot the f***k surely you be more concerned on who helps me around the house also if you post paul rom lupus uk he will email you all rhe relevant information that you should arm yourself with, persuvere as i was turned down TWICE and won this year good luck

  • Thankyou kittykat68,I'll certainly do that should I be turned down.Unbelievable isn't it when there are people out there with nothing wrong with them getting everything!!Gave me a laugh about the nails!!!I'll keep everyone informed.Glad you got yours back ..well done with your perseverance!

  • sorry about spelling ive got my clumsy head on lol

  • I find words come out back to front with the Lupus Fog days....can be quite amusing!!

  • Hi midlifecrisis my gp thinks i have that due to lupus. I just wondered what your symptoms were leading to diagnosis. What did they do to diagnose it? Seen lung specialist and had spirometry and xrays and am waiting for ct scan and ultrasound on a raised hemidiaphragm. Sounds like you are playing a waiting game and i feel for you.

  • Hi cazzbat,I initially felt muscle weakness when going upstairs or out of breath if I went up steep roads.When I went to bed I felt out of breath sometimes with palpitations.Didn't really question it at first..just thought it was part of the changes you get with Lupus!!However thought it strange to get these symptoms when lying down!I Occasionally had a dry cough but then noticed if I came down with a cold it would knock me for six and affected my lungs.I had a routine chest exam to listen to what was going on and he said he could hear crackling.Following that examination I was sent for a CT scan which confirmed I had Pulmonary Fibrosis.I'd only been joking a week or two earlier that I couldn't possibly get anything else as well as Lupus,Raynauds,Osterporosis then followong that Calcinosis,Telangiastias(think I've spelt that wrong!)Hypertension,etc!!!Like you I had the Spirometry Test and X-Rays and to the present time there hasn't been any change.Yes it's a waiting game!I will of course let everyone know how things progress and regarding my medical.I thank everyone for their support and hope all goes well for them.It's comforting to know there are others out there .....otherwise you do feel isolated.

  • Hi midlifecrisis. This sounds just like me, the cough, breathlessness, crackles etc. Had a real bad chest infection and middle ear infection a while ago, took forever to get over it and still have problems with my hearing. Thank you for your help and wish you good luck with your medical.

  • Thankyou for your good wishes cazzbat!I too have problems with my ears...I have had Tinnitus for ages on and off.The GP prescribed anitibiotics but it didn't work.I haven't bothered to go back yet but think I'll discuss with my consultant.It sounds like a Lancaster plane droning!!I don't notice it if the tv is on but as soon as there's silence it's there.Noticed I'm going a little deaf also!!I hate to mention anything else in case they think I'm a hypochondriac!!

  • I was diagnosed with this in 2007 after being diagnosed with SLE mixed connective tissue disorder. I thing I have had lupus from I was a child. I have always had a cough when lying down and breathlessness for years.

    Easter of 2007 I went away to a christian camp and realised I could not dance at a workshop as my lungs were hurting so much, when I got home I rang the hospital to change my appointment with the Rhumy who then kept me in the hospital overnight for test to make sure I did not have a blood clot in my lungs. The next day I was told the lupus has damaged my lungs and treatment was started straight away which did not work.

    I have had all the usual medications but nothing has helped and each year the damage is worst so I asked if I would be a good candidate for lung transplant or oxygen. I was told I could have the transplant but I don't want to so I have asked for the oxygen which I now have the portable one so I can resume my social life again (my oxygen level drops as soon as I move about and then I would start to cough). I sometimes get so breathless if I get up quickly even to answer the phone that I cannot speak.

    I am now waiting for funding for a new drug which has only been tried on eight patients so far.

    Hope this hasn't been too scary :)

  • Hi Maureenpearl,I'm so sorry you are going through this.You are obviously more advanced with your illness than me.No it's not scary for me.I'm very well prepared for the various stages but they say a little knowledge is a dangerous thing!!!I personally like to know what my body is up to!!I hope the new drug is beneficial to you.It could be the start of a "Breathe Easy" time for us Lupies with lung problems.Please let us all know how you get on with it.I wish you the very best of luck and better health.

You may also like...