Grateful for PDSA I’m new here help!

Hi everyone.
I’m newly diagnosed with ITP since Dec 2018 and have been on prednisone since January 9 2019 for 5 weeks now.
Started at 70mg and have tapered down to currently 25mg.
My Hemo is concerned about the increased risk of PJP (formerly PCP) lung infection due to the length of time on the steroids AND the high dosage and wants me to taper off as soon as safely possible.
Now he has me freaking out about this potentially life threatening infection on top of the strong possibility that my platelets will crash as I taper completely off prednisone.
HAS ANYONE OUT THERE HAD PJP lung infection? And if so how did you deal with your platelets?

Thanks ,
Emilia

Hi Emilia- I think no one responded because they have no experience with the lung infection that your doctor is concerned about. Speaking for myself, I have had ITP for 9 years and have been following this board for that time. I've never heard of anyone getting PCP, seems it is something that HIV/AIDS people are at risk for- people with seriously suppressed immune systems. Honestly, I've never heard of it. Also to give some perspective, I have been on prednisone for over a year at a time and never even had a bad cold/bronchitis while on it. Thats my experience. The worst side effects I've had are nervous anxiety, insomnia, weight gain (30lbs), bone loss detected by a bone density test. Its not the best drug for ITP! But its been good for rescue when my platelets are very low. So tapering off prednisone is good if its not working for you. Don't taper too fast, follow your doctor's tapering schedule- there can be withdrawal symptoms when tapering too fast.

What were your platelet counts before prednisone? What are they now? My lowest were 1 and 2K, those times I took 20mg prednisone and they came right back up to over 10K, so again its good for rescue but not long term. I have tried a few drugs- rituxin infusion, dexamethasone, Promacta and Nplate. Rituxin puts many people into remission but it didn't work for me. Nplate is my favorite because I have no side effects and it gets my counts up into a safe range. Its a weekly injection at my hematologist's office. Promacta is another drug-a pill that is especially designed for ITP. Many people like it and have good results with both Nplate and Promacta. Some even achieve remission. ITP is not necessarily a long term condition, for some people its a temporary thing.

Theres a lot to learn about ITP. Try not to worry about fatal lung disease, really I don't think you are at risk on 25mg prednisone. But that said, your platelets might drop as you taper and you will have to move on to a better treatment. Thats what happens to most people, very few sustain counts as they taper prednisone. Good luck, learn all you can. It takes time to get used to the diagnosis but for me now I see that its a fairly easy disorder compared to so many.

Thank you Poseymint for your kind and encouraging words.
I am so very grateful to have this discussion board as a point of reference to keep things in perspective when my fears and anxiety about this new diagnosis gets the better of me.
Emilia

I've been here for quite a while too (since 1998) and have never heard of anyone getting PJP from steroid use. Immunosuppressants are used quite often for ITP and I've never even heard of that. I've been on steroids myself since 2006 and have never had a doctor tell me that they are worried about lung infections. Doctors should not be freaking patients out; they should calm your fears. He puts you on a drug then makes you freak out over it? Not nice!

Hi Sandi,
Thanks for your input.
I agree. I’m not happy with my Hemo at all.
I didn’t respond to 2 courses of Dexamethasone so was put on a 9 week course of Prednisone starting at 70mg for 2 weeks then tapering 10mg down every week. My platelets hav only had a marginal response so off I went to do IVIG.
I’m currently riding that high but fully expecting platelets to drop next week once IVIG wears off AND I’m tapering Prednisone into the “difficult” zone between 20mg -5mg
Fingers crossed that I stabilize!
To be fair, I did read up on this apparently opportunistic infection PCP which is a fungal infection that can affect non HIV,
individuals whose immune system is down. Apparently the length of time and high dosage of Prednisone or any drugs that suppress your immune system, significantly increases your chances of getting this lung infection.
Needless to say I’m now super vigilant of any fever or cough! Thanks to my Hemo!
But have calmed down significantly thanks to you guys.
Regards
Emilia

One of the best criteria for managing ITP is to have a doctor that you like. If you're not happy with him, you can get another opinion. All Hemo's are not created equal!