Pulmonary Fibrosis conditions

[Guest guest]

Hi Everyone! Its been awhile since I logged on. Ive been doing alot of

Doctor appts and praying my SSDI is approved.

When I first joined I had been told I had COPD and PF.

I have been sent to a lung spiecalist since and had a CT scan done

along with blood test, pf test, and an xray.

I have PF, condition is between moderate and severe.

I was told if I took the prednisone on a reg,basis I may have 4 1/2 to

5 yrs of life.

I am refusing the med.

My question is this do any of you have nose bleeds from the nasal

passages being dry. Ive had it over a week and dont know how to remedy

it.

[Guest guest]

Hi ,

It's good to see you post again. I'm sorry to hear your diagnosis of pulmonary fibrosis was confirmed. Have they told you what type they believe you have? I'm just wondering because prognosis can vary greatly depending on the type. The prednisone decision is a tough one. That's where knowing what type of fibrosis you have can help you make that call. It's a very effective drug for some of us, not so much for others. Alot depends on how much inflammation vs scarring you have. The side effects can be most unpleasant but for me it was worth it because it arrested my disease and I've stayed stable now for over two years. Everyone has to make that decision for themselves.

Are you drying out because of the oxygen? Do you have a water bottle attached to your concentrator? That helps. I also put ky jelly in my nose with a q-tip to help keep it from drying out too much. Others use a product called Ayr which is pretty much the same thing just packaged in a kind of nasal spray. It has something in it though that makes my nose and sinuses burn. I don't know whether it's a preservative or something but I can't use it. Many many others use it though with no problem. The least expensive thing though is plain old ky jelly.

Look after yourself!

Beth

Age 49 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Pulmonary Fibrosis conditions

Hi Everyone! Its been awhile since I logged on. Ive been doing alot of Doctor appts and praying my SSDI is approved.When I first joined I had been told I had COPD and PF.I have been sent to a lung spiecalist since and had a CT scan done along with blood test, pf test, and an xray.I have PF, condition is between moderate and severe.I was told if I took the prednisone on a reg,basis I may have 4 1/2 to 5 yrs of life.I am refusing the med.My question is this do any of you have nose bleeds from the nasal passages being dry. Ive had it over a week and dont know how to remedy it.

[Guest guest]

I have been very successful with 2000mg of cellcept. 2 500mg capsules 2x daily. the doc. is very happy that my lungs seem to be stable and am breathing much easier. first diagnosed Nov. '05 I was on prednisone but not anymore.

ken

Pulmonary Fibrosis conditions

Hi Everyone! Its been awhile since I logged on. Ive been doing alot of Doctor appts and praying my SSDI is approved.When I first joined I had been told I had COPD and PF.I have been sent to a lung spiecalist since and had a CT scan done along with blood test, pf test, and an xray.I have PF, condition is between moderate and severe.I was told if I took the prednisone on a reg,basis I may have 4 1/2 to 5 yrs of life.I am refusing the med.My question is this do any of you have nose bleeds from the nasal passages being dry. Ive had it over a week and dont know how to remedy it.