Re: aspergillosis

[Guest guest]

BJ

First I'd have to know who made the diagnosis and prescription and where

they are located or what facility. Then if they would appear to have the

expertise I would tend to trust the pulmonologist on this since it has

compromised your lungs. However, one thing concerns me on top of that.

Is this considered the cause of your PF? If so, it's no longer IPF

because the cause is identified.

Now, there are two different forms of aspergillosis and they are

generally treated differently. Allergic Aspergillosis is generally

treated with corticosteroids. However, I'm assuming he's diagnosed

invasive pulmonary Aspergillosis since he's treating with an antifungal.

For that there are multiple drugs. The most common according to Mayo

Clinic use to be amphotericin B, but the most common today is

voriconazole. Itraconazole is still common although its not as broad

spectrum as voriconazole, but they are in the same family. You might

discuss medication choices with your doctor while discussing the

doughnut hole issue. Also, you might look at the pharmaceutical programs

of assistance during the doughnut hole. Each pharmaceutical is

different.

Aspergillosis exists all around all of us. Outdoors, it's found in

decaying leaves and compost and on plants, trees and grain crops.

Inside, the spores — the reproductive parts of mold — thrive in

air conditioning and heating ducts, insulation, carpeting, ornamental

plants, tap water, dust and food — especially ground pepper and

other spices. This is why your physician talked about people with

weakened immune systems. However, the weakened immune system may be

caused by illness but is often caused by autoimmune suppressant drugs as

well. Have you taken anything like Imuran or Cellcept or Prednisone for

any time?

As to your GP, I see why he's saying you may not need it. Often it

doesn't need treatment and may be watched. However, there appears to be

evidence yours is already causing damange. One more thing and that is

close monitoring. Complications can be serious. Sometimes the antifungal

doesn't penetrate well and bleeding may even develop and require

surgery.

Very sorry to hear of your condition. Find the most knowledgeable

medical authority on your disease you can, preferably a teaching

hospital with an ILD department or an IPF Center of Excellence. Ask

questions of them. Don't be shy about the cost issue. Look for the

pharmaceutical assistance programs as well. The med you're on is from

Jannsen. The one I mentioned comes from Pfizer. While I'd listen to my

GP and let that lead to further discussions with the pulmonologist, I

would trust the pulmonologist more since you have lung related

complications. The fungus is one thing. The damage being caused to your

lungs more specific and serious.

>

> I was recently diagnosed with IPF (June 2009) Along with IPf came a

diagnosis os aspergillosis from a broncoscopy biopsy. This fungus is

rare and usually in patients with compromised immune systems. (Aids,

Leukemia, autoimmune diseases) I have none. My Dr. put me on a

medication called Itraconazole 100 mg twice daily. This drug is very

expensive but covered by my insurance, however, it has thrown me into

the donut hole for continued use and the cost of my other drugs (8). I

thought I had no chose but to use it. Now my internal medicine Dr. is

questioning how necessary it is to continue to use it. Is anyone out

there familiar with the drug and have any suggestions what I could do.

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