My Fight with PCP

[norcalian]

I just returned from a 2 week stint in the hospital fighting PCP. I’m home now but I’m still extremely weak and have problems with shortness of breath. I can’t stand for more than a few minutes and I am on oxygen and probably will be for at least a little while. I thought I would tell a bit of my story in case it can be of any use to anyone else.

Everything started about three weeks ago with a low grade fever that would always break by early afternoon. When I first got a fever I called my Rheumy, who I couldn't get a hold of so I made an appointment that day with a GP. I got a chest x-ray and some blood work done. The chest x-ray looked clear so the GP called my Rheumy, they both decided to give me a prescription of Avalox and sent me home with instructions to go to the hospital if my fever got highter than 101. The fevers kept coming and I emailed my Rheumy asking him why PCP wasn’t being taken more seriously - especially since a lot of the symptoms fit (tightness in chest, SOB, fevers, and a slight, dry cough). So my Rheumy set me up with an appointment with a pulmonologist. The Pulmo looked at my xray and said that he was 99% sure it wassn’t PCP - but since my Pulse-Oxygen level was so low (sitting at 90%) that he would do a bronchoscopy and make sure. The next day I got the bronch and then went home. On Thursday, my fever broke the 101 mark so I called my rheumy to ask if I should go to the hospital. He checked the results of the bronch and called me back letting me know that I had PCP and that I needed to go straight to the hospital.

I should mention at this point that I was never on CTX. My treatment course included RTX, Imuran and a whole hell of a lot of prednisone (80mg for 6 weeks, then 60 for a month, 50 for a month and now finally down to 40). I think it was all the prednisone that made me more susceptible to PCP. At the hospital there was a lot of disagreement about whether to put me on Bactrim or something else. I have a questionable allergy to sulpha antibiotics (long story). So I was put on Pentamidine for a 21 day course. 10 days into the tx I became intolerant of Pentamidine. I started getting orthostatic hypotension (where my blood pressure would drop significantly when I stood up) and it would not go away as I walked around. I was moved from Pentamidine to Dapsone - which made me really sick, so now I’m finishing the 21 day course with clindamyacin...which I seem to be tolerating pretty well. As I mentioned, I was sent home with oxygen, which I still need. I try to stay sitting most of the day. I still can’t do a lot of walking without getting SOB or dizzy.

Anyway I hope this can be of some help or interest to someone. Sorry for the length. Are there any other member s out there that have dealt with PCP?

[Barry]

Could you please give the full name of PCP. I don't know what you mean.

[norcalian]

Could you please give the full name of PCP. I don't know what you mean.

PCP stands for Pneumocystis pneumonia. It's an infection that is common with HIV patients and people who are on immuno-suppressive drugs...like us. It's more common with individuals who are treated with CTX...which is why most people on CTX will also do an antibiotic prophylaxis such as Bactrim. You can read more about it here: Pneumocystis pneumonia - Wikipedia, the free encyclopedia

[Barry]

Thank you.

[Sangye]

Yikes, you've really been through the mill. I'm glad they finally tracked it down and treated it. Pneumonia (any type) is deeply depleting to the body. You have to be very careful with your lungs for at least a year after having pneumonia. (I've had pneumonia many times and have learned this) As you recover now, do less than you think you can each day. Aim to finish each day with energy left over. That's the only way to build your strength.

[Psyborg]

That's scary Norcalian. I'm glad you are recovering now. Please take care of yourself.

[drz]

Delighted to hear you survived and are well enough to make it home. I was told it has a high mortality rate even in healthy people. Thanks for the good news! A long recovery would seem normal after such an ordeal.

[norcalian]

Delighted to hear your survived and are well enough to make it home. I was told it has a high mortality rate even in healthy people. Thanks for the good news! A long recovery would seem normal after such an ordeal.

I was told the same thing Drz. In fact I asked my Rheumy about the last patient that he had die from WG - he said it was 8 years ago and it was from PCP...that was my first time hearing about the disease. When my Rhuemy called me to tell me that I was positive for PCP I started freaking out. He was very cavalier about it...just said that I needed some antibiotics as if it was very routine...which I guess helped to calm me down. As I talked to various doctors and nurses about PCP I learned that timing has a lot to do with the mortality rate. If you come into the ER needing to be intubated your chances of survival are pretty low. So I got in early enough that it was pretty treatable. But that's the tricky thing about PCP...it can be kind of hard to diagnose. I had to be really aggressive and self-advocate with my doctors to make sure that I got a diagnosis.

[norcalian]

Yikes, you've really been through the mill. I'm glad they finally tracked it down and treated it. Pneumonia (any type) is deeply depleting to the body. You have to be very careful with your lungs for at least a year after having pneumonia. (I've had pneumonia many times and have learned this) As you recover now, do less than you think you can each day. Aim to finish each day with energy left over. That's the only way to build your strength.

Thanks for the advice, Sangye. Any suggestions on how I can be careful with my lungs?

[Sangye]

Some examples
- Be vigilant about not using chemicals in your home and garden, and avoid places that do.
- Avoid being near smokers
- Take extra precautions around people who are sick with URIs
- Use a true HEPA air purifier in your home and anywhere you spend time
- Avoid public transportation, busy times in stores, crowds, etc...