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?
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