Crohn's/Pneumocystis pneumonia (PCP)/ Cimzia/6MP

[SickAndTired13]

Hello,

I was started on Cimzia last June and everything was fine minus a few odd reactions, but nothing that I couldn't handle. Then the flu/cold season hit the Northwest and all of a sudden I was deathly sick and couldn't shake it. It turns out that I had water in my left lung. My GI told me that it was most likely PCP which is very common with AIDS/HIV patients but it also affects people who are immunocompromised such as myself. Anyways, so I take the Bactrim for 10 days and I feel better minus a slight allergic reaction. I have been off of all of my Crohn's meds since October. I am starting to flare so now he has to put me back on my meds but he is still worried about the PCP because apparently it can come back...Which, I did not know. So here I am 28 years old and feeling like I am running out of options. I'm thinking maybe I should just have surgery and remove my colon and have a colostomy bag for the rest of my life. IDK... I'm super depressed and scared that maybe this stupid disease is going to kill me off before I even see 30. Has anyone else had PCP? What was the outcome? What were the complications? Any input or advice would be greatly appreciated.

Thank you!

 

[Jennifer]

I can't find a thread on the forum where a member talks about having Pneumocystis pneumonia and I've never dealt with it myself. From my own personal experience, I had to stop taking biologics because of recurring infections. I never had that problem with 6MP however. I now take a lower dose of 6MP before I tried biologics (in the past the 6MP alone wasn't enough) along with a low dose of Allopurinol (it helps people tolerate 6MP better). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/ What other medications have you tried?

I don't know if this will help or not but it might as it goes over treatment & outcomes, Symptoms, prevention etc. http://www.cdc.gov/fungal/pneumocystis-pneumonia/

 

[fozheart]

Hi Sick and tired, I am sorry you are having such a crummy time! What is PCP? Another name for pleurisy? (That is what comes to mind when you say water in the lungs.) I don 't know much about Cimzia and6 MP.very much eithee but is 6MP an immunosupressant? There have been times that my meds like Imuran or Methotrexate have brought my WBC down so low that I have had ro take a break from them. I have had both plerisy and pericarditis a few times when being immunosupressed, and usually am put on a high dose of steroids. (I apologize if I am off track regarding what PCP is!)

Yes.... are so young to have such a crummy disease...not fair at all, but try not to give up! Just hang in there, and hopefully your doc will come up with a medicine that will not make you so succeptible to things.

It sounds like you do have a caring doctor, which is great. I s there someone you can talk to about your feelings, and beimg scared?