Jennifershope, follow up to the steroid question.

[anonymous]

[No message]

 

[anonymous]

[No message]

 

[anonymous]

Ok let me try that again. Earlier i read that you were on steroids cause of addisons. If i remember correctly, you said that you have been on them for five years? Trying to remember from your post.

You also said that you were too immunosupressed to be inflammed, so your lung functions were very good. May i ask what they are? Do you know that your lungs aren't inflammed because you are immunosupressed or because you are on such high steroids that it reduces the inflammation by a considerable amount?

Do you have any lung damage at all? What about when you have infections ...Is it harder for you to clear up?

The reason I'm asking is cause I find that very intriguing. I know that a HUGE problem with cf patients is that we get an accumulation of white bloodcells in our mucus that actually does a lot more harm then good. I think in fact that it might do more damage than the bugs themselves. Now, if you were a healthy individual, don't you think that cfers might benefit from suppressing the immune system to a certain degree? Reduce the white blood cells, reduce the inflammation.

I know that most of you are going to think it's a crazy idea...but listening to your case, it sounds like it's working, for you. Perhaps we were to suppress our immune systems to half the level of normal people, i wonder if it would have any benefit on our lungs?

Let me know what you think,
Thanks

 

[anonymous]

Ok let me try that again. Earlier i read that you were on steroids cause of addisons. If i remember correctly, you said that you have been on them for five years? Trying to remember from your post.

You also said that you were too immunosupressed to be inflammed, so your lung functions were very good. May i ask what they are? Do you know that your lungs aren't inflammed because you are immunosupressed or because you are on such high steroids that it reduces the inflammation by a considerable amount?

Do you have any lung damage at all? What about when you have infections ...Is it harder for you to clear up?

The reason I'm asking is cause I find that very intriguing. I know that a HUGE problem with cf patients is that we get an accumulation of white bloodcells in our mucus that actually does a lot more harm then good. I think in fact that it might do more damage than the bugs themselves. Now, if you were a healthy individual, don't you think that cfers might benefit from suppressing the immune system to a certain degree? Reduce the white blood cells, reduce the inflammation.

I know that most of you are going to think it's a crazy idea...but listening to your case, it sounds like it's working, for you. Perhaps we were to suppress our immune systems to half the level of normal people, i wonder if it would have any benefit on our lungs?

Let me know what you think,
Thanks

 

[JennifersHope]

I will try to answer this to the best of my ability.. I had sort of a crumby day and I am tired so if I don't do a good job just keep asking to you get the answers..

Before I was dx with addison's .. my lungs chronically showed scarring.. not a lot but moderate amounts... they always showed increased marking and infiltrates.. I even had a plueral effusion for years.. that never went away...

I was dx with addison's about 3 years ago..( I think) I was put on a base dose of steroids of 30 mgs a day which is theroy is to replace what my body would normally be making... but it is not the exact same kind of steroids as your body makes so ... I have many, many, side effects from it......I have high blood pressure, diabetes, angina chest pain...... and my last chest x ray showed a mild swelling and twisting of my thoratic aortia.. which from what I know is the makings of an aortic anyurism BAD NEWS. still waiting for follow up with the dr to make sure the radiologist wasn't smoking crack when he read it... which can be the case.....


My lung function normally is in the 90s I do have reactive airway disease so sometimes my PFTS are in the 40s depends.. but baseline is 90s.. MY chest x rays are all normal

My lungs are not inflammed for both reasons.. steroids is an antinflamatory just by nature of the fact that it doesn't allow you to have an inflammation process..... so that is why it reduces the inflamation...

I don't have any signs of broncoletisis.. or very mild..... I have a very hard time getting rid of infections...I am in the hospital often. and Ivs more and more .. I was told my CF is very mild.. (that is based on Xrays) .. but I don't even culture anything all the time..(MRSA) most of my trouble comes from my "asthma" when I get an infection.. My bronchospams are severe and I clamp down and can't breath.... it take very large doses of steroids to open me up..but once open I am able to clear my lungs really well..... and am okay.. just when I can't clear my lungs I Have trouble.....I used to get pneumonia two to three times a year before steroids... and like I said I always had crap on x ray..Now nothing...

I truly believe that the steroids would be very beneficial to CFers IF THEY DIDN'T KILL YOU ALONG THE WAY ..they are looking for something that works similiar.. I think that is what they are hoping for with zitromax and large doses of advil. I don't think you will find a doctor that will prescribe steroids for CF inflamation long term. .One there is no evidence..tht it will work.. My own doctors don't said scaring doesn't go away from steorids.. though mine is gone..WITH NO EXPLANATION OTHER THAN STEROIDS .. and the side effects will shorten you life much faster than CF.. I can't tell you how hard it is to feel like a normal human being when you have large doses of steroids coursing through your body... not fun.. and makes me antsy.... and hard to be in relationship with sometimes....t

I am very seldom on a base dose of steroids.. Since I have addison's when ever I am stressed physically or emotionally I have to double and triple my steroids or I get very sick, very fast.. with my brain being the first to go. followed by blood pressure, blood sugar etc...I get real weak and dizzy... I lived like that for years..... before dx...ppl thought I was nuts..because my behavior was so bazzare and no one knew my body was shutting down... it was terrible...I really have a better chance of dying of complications of steroid use before CF .... My poor body is so swollen, fat, overfilled with fluid...my heart pounds like crazy, bone suck.... . etc.. but my dang lungs.. look great on x ray.... and cat scan... and my PFTS are great...but my body has had enough of these steroids..

HOpe this helps. Any more questions please feel free to ask.. Like I said I am tired.... and not my best

Jennifer

33 addison's and CF

I

 

[JennifersHope]

I will try to answer this to the best of my ability.. I had sort of a crumby day and I am tired so if I don't do a good job just keep asking to you get the answers..

Before I was dx with addison's .. my lungs chronically showed scarring.. not a lot but moderate amounts... they always showed increased marking and infiltrates.. I even had a plueral effusion for years.. that never went away...

I was dx with addison's about 3 years ago..( I think) I was put on a base dose of steroids of 30 mgs a day which is theroy is to replace what my body would normally be making... but it is not the exact same kind of steroids as your body makes so ... I have many, many, side effects from it......I have high blood pressure, diabetes, angina chest pain...... and my last chest x ray showed a mild swelling and twisting of my thoratic aortia.. which from what I know is the makings of an aortic anyurism BAD NEWS. still waiting for follow up with the dr to make sure the radiologist wasn't smoking crack when he read it... which can be the case.....


My lung function normally is in the 90s I do have reactive airway disease so sometimes my PFTS are in the 40s depends.. but baseline is 90s.. MY chest x rays are all normal

My lungs are not inflammed for both reasons.. steroids is an antinflamatory just by nature of the fact that it doesn't allow you to have an inflammation process..... so that is why it reduces the inflamation...

I don't have any signs of broncoletisis.. or very mild..... I have a very hard time getting rid of infections...I am in the hospital often. and Ivs more and more .. I was told my CF is very mild.. (that is based on Xrays) .. but I don't even culture anything all the time..(MRSA) most of my trouble comes from my "asthma" when I get an infection.. My bronchospams are severe and I clamp down and can't breath.... it take very large doses of steroids to open me up..but once open I am able to clear my lungs really well..... and am okay.. just when I can't clear my lungs I Have trouble.....I used to get pneumonia two to three times a year before steroids... and like I said I always had crap on x ray..Now nothing...

I truly believe that the steroids would be very beneficial to CFers IF THEY DIDN'T KILL YOU ALONG THE WAY ..they are looking for something that works similiar.. I think that is what they are hoping for with zitromax and large doses of advil. I don't think you will find a doctor that will prescribe steroids for CF inflamation long term. .One there is no evidence..tht it will work.. My own doctors don't said scaring doesn't go away from steorids.. though mine is gone..WITH NO EXPLANATION OTHER THAN STEROIDS .. and the side effects will shorten you life much faster than CF.. I can't tell you how hard it is to feel like a normal human being when you have large doses of steroids coursing through your body... not fun.. and makes me antsy.... and hard to be in relationship with sometimes....t

I am very seldom on a base dose of steroids.. Since I have addison's when ever I am stressed physically or emotionally I have to double and triple my steroids or I get very sick, very fast.. with my brain being the first to go. followed by blood pressure, blood sugar etc...I get real weak and dizzy... I lived like that for years..... before dx...ppl thought I was nuts..because my behavior was so bazzare and no one knew my body was shutting down... it was terrible...I really have a better chance of dying of complications of steroid use before CF .... My poor body is so swollen, fat, overfilled with fluid...my heart pounds like crazy, bone suck.... . etc.. but my dang lungs.. look great on x ray.... and cat scan... and my PFTS are great...but my body has had enough of these steroids..

HOpe this helps. Any more questions please feel free to ask.. Like I said I am tired.... and not my best

Jennifer

33 addison's and CF

I