My energy levels are at an all time low. I'm back on a high dose on prednisone because of a possible (but mild) relapse of BOOP. (However never one to sit around, I'm still working flat stick and every day is booked with various tasks)
Basically my immune system is in over-drive and there is an inflammatory response in my lungs that causes the minute air passages to block up. By treating with a corticosteroid such as prednisone, my immune system is suppressed and the inflammation reduced.
The steroids have massive side effects, both short and long term. Thinning of the skin, fat build-up in the face and stomach. higher risk of glaucoma and diabetes, bone density loss and possible bone necrosis in the hips etc over a long period of use.
So as you can imagine the doctors want to get me off prednisone if possible. Trouble is that it would appear that every time I go below 20mg a day I go into BOOP relapse. So last month we tried Azathioprine, an immunosuppressive drug often used to avoid rejection in transplants. The problem was that this and other similar drugs are also myelosuppressive ie they damage bone marrow (where blood is made) , something I very little off to start with.
So after my blood counts plummeted following a week long trial of the drug it was decided I would have to stay on prednisone indefinitely as I wouldn't survive very long with no marrow!
Not one to give in lightly, That got me on a hunt for a drug/ treatment regime that was not going to wipe out my bone marrow. I found a medical paper that mentioned a study in 1995 by a group of Japanese doctors who had successfully treated six BOOP patients with a low dose of the antibiotic Erythromycin.
Apparently there is an anti-inflammatory side effect to the drug even in relatively low doses.
I printed off just one paragraph of the study, just enough to get the haematologist interested enough to look into it. He accepted it just might work and has promised to discuss it with his respiratory colleagues and phone me back.
If they accept my treatment plan, and so far I can't see what we have to loose with no other options, I will be over the moon!
Imagine that. Interrupting the senior haematologist as he tells you there are no drugs that will treat your disease without killing you, and I say while passing him my fndings "have you considered Erythromycin ?" and he pauses, reads my document and say .."that might just work". Priceless!!.
Fingers crossed for the go ahead and positive outcome. I'm feeling pretty darn proud of myself right now. So much so that I'm about to celebrate with a Bourbon and Coke. Something I haven't had in a number of years. Tomorrow I'm in for a blood transfusion anyway so it's not like I can do any permanent harm! :)
Cheers! ...Ron
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