My Fight with PCP

[watersedge]

Glad that you are out of hospital and at home recovering. Pneumonia is really terrible and very scary. Hope you continue to slowly build yourself back up and feel better soon.

[norcalian]

Thanks for the pointers Sangye. I already started to look around on Amazon for TRUE HEPA air filters. There are a couple that look good to me and that I can afford.

One thing that I do feel fortunate with in my care is that living in the San Francisco Bay Area, everyone is familiar with PCP and have worked extensively with it in the HIV population out here. One thing no one is familiar with is WG. I had to keep explaining it to every doctor and nurse that came through. It got really weird when the floor doctor after consulting with my original pulmonologist came back and said that they were unsure of my diagnosis of WG based only on my blood ANCA test and thought that I still had Valley Fever and wanted to start me on anti-fungals (even after I had two negative tests for Valley Fever back when they were trying to figure out what was wrong with me pre WG Dx). The Pulmmy was totally unaware that I had a lung biopsy to confirm the WG diagnosis and have been on tx since...that's how out of touch he is. I'm firing that guy and trying to get on with the Pulmonologist who made the original diagnosis and did the biopsy. It's crazy how some doctors are...you really have to be careful. I obviously said "no" to the anti-fungal treatments and told the floor Doc that she needed to talk to my Rheumy.

[drz]

You are fortunate to have enough awareness of your health history to protect yourself from incompetent doctors who can kill you through mistreatment. Good luck on your recovery.

[Sangye]

Good for you, norcalian. Many of us have had another doctor give us the "I don't think you have Wegs" line. It can be very upsetting but you did exactly the right thing.

It didn't occur to me, but yes you're in the heart of the PCP Knowledge Base. We all benefit from those who have suffered before us, and hopefully those who follow us will experience the same. Take good care of yourself

[pberggren1]

I know another person on the Forum that was just given a: I don't think it is Wegs, it is AFS. In this case I might think the ENT is right.

[ScreaminMeanie]

Ian, just seeing this thread. I went through PCP 20 years ago when I was on ctx. I've only recently read that PCP can be an issue with rtx also, so I am going to stay on the Bactrim, since I seem to tolerate it well. I'm lucky - I thought I was allergic to sulfa drugs, but apparently I can tolerate them in small doses. I know I was in the hospital 8 days with the PCP, and they must have had me on massive doses of one of the sulfas during that time, but I literally don't remember any of that hospital stay, except for the bronchoscopy before they admitted me (02 at 28%!!!!!), and waiting for my husband to come pick me up after they discharged me. I hope you bounce back really quickly.

[norcalian]

Thanks for your post ScreaminMeanie - I'm hoping that I can get tested for my supposed sulpha allergy soon. I'm told when I'm down to very low doses of prednisone or off of it all together then I can see an allergist to see if I have a sulpha allergy or not. In the meantime, my Rheumy doesn't want to risk an allergic reaction while on immuno-suppressants and dealing with Wegs. Right now I'm choking down Mepron every morning...which is pretty nasty...but it's better than the alternative.

[drz]

Thanks for your post ScreaminMeanie - I'm hoping that I can get tested for my supposed sulpha allergy soon. I'm told when I'm down to very low doses of prednisone or off of it all together then I can see an allergist to see if I have a sulpha allergy or not. In the meantime, my Rheumy doesn't want to risk an allergic reaction while on immuno-suppressants and dealing with Wegs. Right now I'm choking down Mepron every morning...which is pretty nasty...but it's better than the alternative.

My treating rheumatologist says same thing about trying the desensitization to sulfa. My consultant Wegs specialist says I could consider trying it since he thinks Bactrim might give me better protection from PCP than the pentamadine so we will discuss it again at my next visit.

[vdub]

My PCP was the first to nail down my dx as wegs. My rheumy was the one who kept saying "I'm not sure", so I went to SLC and they reconfirmed wegs. Made feel better just having a good idea of what we were dealing with....

On edit.... oops, as drz pointed out to me..... different pcp.... sheeezeeee, too many acronyms... aza also has two meanies as I recall....

[Twice]

I had PCP last year and it's really vile. I was told that it was commonly known in the HIV community as the "great finisher". I became intollerent to Septrin towards the end of my 21 day treatment (fragmented red blood cells and platelet collapse) and had several months of pentamadine. About to start prophylactic pentamadine again after wegs re-diagnosis. I'd really like not to have PCP again.

PCP is caused by a fungus which is commonly found in healthy human lungs, but which can become the agent of disease in people with weakened immune systems. I'm not sure that there's a great deal you cann do in our situation to avoid it, other than acting quickly and determinedly as norcalian did.