This is really a reply to the South African runner's com...

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This is really a reply to the South African runner's comment.

Dear friend,

I am in a very similar situation to yourself in that I reported to the Doctor in January 2005 with a cough and shortness of breath.

I'm 48 and until a 2 -3 years ago ran half marathons regularly.

The X-rays (which I was convinced would be clear) showed shadows on both lungs. The following CT scan and VATS lung biopsy all said I have

usual interstitial pneumonia / fibrosing alveolitis. I'm just dropping my prednisolone dose from 40 mg to a maintenance dose of 15mg and upping the azathioprine from 50 to 75 (eventually 150 mg).

I find the info available on the net to be at best too simple and at worst extremely alarming. There seems to be no good news out there.

I for one feel Ok. Sure I get short of breath and sure all the test results say I've got this thing, but on a day to day basis I certainly don't feel like I'm going to be dead in three years.

So, like you I am looking for more positive information.

I would echo your last sentence.

[i:5a38bb7b72]This message was automatically imported from the original Patient Experience[/i:5a38bb7b72]

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  • Posted

    I valued having a response to my comment. My email address can be passed on if this fellow runner would like to contact me. Maybe as we have both mentioned a wish to be positive, we can have our own "happy ending" with ongoing good health.

    My maintenance has started on 20mg prednisone every 2nd day and 100mg azathiaprine daily. I am feeling better in my self on this lower dosage, and am excercising a little more. I would really like contact with another patient

    [i:bb6e65635f]This message was automatically imported from the original Patient Experience[/i:bb6e65635f]

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  • Posted

    Could you please pass on my e-mail address to the above correspondent - I am sure we will jointly post anything of interest which we come across regarding this objectionable disease.

    Many thanks

    Dave Pitt

    [i:d263d4ac25]This message was automatically imported from the original Patient Experience[/i:d263d4ac25]

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  • Posted

    I see that Dave Pitt has requested his email address to be forwarded to me. Mine is ****. If he could send his address to me. Good news on my side is that my excercising has increased, and I am able to run half marathons again. Not as quickly as before, but Running I am!

    (Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)

    [i:ee0edb75f7]This message was automatically imported from the original Patient Experience[/i:ee0edb75f7]

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  • Posted

    I hope you like this information. I was running madly every day and living in the high snowy mountains of Australia, in a little place called Cabramurra. I ran daily for about ten years and then in 1991 i noticed that I was struggling eventually not able to run well because of shortness of breath. Eventually walking was really tough. I struggled with this for 4 years, waiting for the thing to get better. I will say here that I did have chicken pox at age 38 and a cough at that time. The link with that virus is significant i believe.

    Eventually I had a biopsy, with the camera and all and the diagnosis of fibrosing alveolitis was made in may 1996. i have the lung test information from that time and my lungs were in good order apart from the gas exchange. i look just now at the old test results. My gas exchange figures were down to 28% of predicted and the doctors were not too optimistic about my future. Other aspects of the lung volumes and the lung functions from a plumping point of view were really ok.

    The treatment was psyclophosphamide and prednisolone. 60 mls of pred at first reducing to 25 for the next two years. The immediate recovery was fron 29% diffusion to 36% in the first three months. Then there was a gradual improvement to 46% over the next 12 months or so. After three more three monthly tests,with consistant results around the 46% level and a continuing feeling of well being, I was on 12.5 mil per day of prednisolone and continued the other drug the same.

    At that time i asked if i could drop to 5 mls of pred and maybe stop the psyclophosphamide, but the docs suggestion was no. i didnt like the potential for cancer from that drug and the specialist knew very little about the biology of the drug with respect to the causes and nature of my condidtion.

    In 1999 I experimented by walking consistanly the same kind of effort and moniterring my lungs by self feeling the exhaustion levels and so on. In 1999 I went against the specialist and stopped taking the psyclo whilst intensely moniterring my feeligs during the daily walks up specific hills and gradients. When I had been off the drug six months and actually felt better i told the doctor.

    The lungs were tested routinely and eventually, when no change was noted I was back to yearly checks.I had a test in april 2002 and it was the same as always. I didnt go the next year nor 2004. I felt really good, though no better. My mind set at heart was that my lungs are at best, a 46% machine and would only slide down because of aging. The specialist agreed.

    In 2004 I had a bad chest infection and was worried the disease was running again. I recoverred and was walking those gradients and feeling just as good as i ever did. But i had the lungs tested in Feb 2005 in a different hospital. The test results were the same again, which surprised me because I was a bit older since the last test and i felt bad that particular week. I figurred that the higher air pressure at the new place was the reason it was just a good as ever.

    I started to drop the prednisole back to 5 mil in 2004 on my own gut feel, that it would be ok. There seemed to be a recurance of symptoms...all be it very mild and so I went back up in dose. However i did this a few times with interesting outcomes.

    I felt well and was confident that the walking up consistant gradients and consciously measuring performance was a better test then the one done in hospital. I had another hospital test done in Sept 2005 after being on 5ml for about three months. I was very confident that the test would show no deterioration as my hill walking self tests were all the same result every day.This test result and i am looking at it now, showd a reduction in RV and an increase in the gas exchange from 46% expected to 55 % expected.

    Initially i was alarmed at the reduced RV. But concluded that, since all other volume numbers were as good as any 20 year old, this reduction in residual volume was a desirable training

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  • Posted

    Please read my positive response to the comment number 2 above, re South African Runner. dated today.

    [i:e90aa59346]This message was automatically imported from the original Patient Experience[/i:e90aa59346]

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