Diagnosed with CLL and ITP together! What can I expect?

I had a very severe form of I. T. P. while I was in the Army in 1989. 20% chance to live. Red Cross flew my family to Augusta GA. Because I wasn't responding to the prednisone. Anyways finally I got through it and the blood pathologist told me 99.9% chance this will never happen again. Went overseas to Germany and the disease came back with a vengeance. Red Cross again. And I was told I was the first to contract I. T. P. Twice. Had severe mental problems from that day till now. It's been a nightmare still all these years later. They did an emergency Splenectomy to finally cure the disease. Horrible experience. Jerry George

Does anyone respond to anything on here? I'm looking for someone with knowledge of ITP and someone contracting it twice.

I was prescribed 120mg of prednisone a day when I contracted ITP in 1989. Since then I have mentioned that to doctors and everyone of them said couldn't have been 120mg. Yes it was. My mental illness started during 2nd time I was diagnosed with ITP.

Good morning, @jbgeorge Welcome to Mayo Clinic Connect. We’re an online community of people just like you who gather here to find answers or support from people who share a common health situation. I’m sorry that your comments fell under the radar but I’m happy to help you find other members who have Immune Thrombocytopenia Purpura.
ITP is a platelet disorder with two forms of the condition. One can be acute…generally a once and done’ situation which is what you may have had initially.

It can also be a chronic condition which can recur more than once and can be on-going. I’ve attached some links below for information on ITP from the Mayo Clinic and also Chop.edu

We also have a number of members, @tammielou
@jimmyb63, @kewp @nanashirley @hoytm40 @julesknox and many others with ITP who have ongoing conversations in this discussion:
Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
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https://www.chop.edu/conditions-diseases/idiopathic-thrombocytopenic-purpura-itp
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https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
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https://www.nhlbi.nih.gov/health/immune-thrombocytopenia

Are you currently in treatment for this?

Thank you very much for reaching out to me. And sorry for the rant but it was just crickets around here. You are the first to let me know you can have this twice. I got it when I was in the Army. It was real bad from day one. I was given a 20% chance to survive. Red cross notified my family and they got an emergency flight to me in Georgia. 120mg prednisone a day. Bone marrow biopsy and finally my platelet count jumped up to 400,000 and the blood pathologist told me 99.9% chance it'll happen to you again this is all they knew back then I guess. I went to Germany in about a month in about a month after that I started bleeding and was rushed to the hospital and once again given another 20% chance to live and was slow to respond and they finally got my platelet count up where they could do an emergency surgery Red Cross flew my family out to me again and remove my spleen in that cured my disease. But I started having very serious mental health issues due to I think and what they told me prednisone and I still have you know mental health problems have ever since then.

Crickets…you only want to hear them on a warm summer evening. ☺️ It’s not often there isn’t a member jumping in to share their experiences.

Your first experience with ITP was certainly frightening! That was a very hefty dose of oral prednisone, twice the daily upper dosage in today’s standards. I have no idea if that caused the mental health issues. But when I was hospitalized for a serious inflammatory spine issue I was on 1,000 ml daily IV for a couple of days was warned about the side effects…one of which were hallucinations. They were pretty intense.
I’m so sorry you’re having continued problems after your experience.
With this second onset of the blood disorder, are you back in the states? Do you see a hematologist?

This happened in 1989. The 120mg was IV. then 80mg oral daily for I think a week. Then tapered off. In Germany a few months later I was put on 80mg orally for around a month but the hallucinations were so intense I stepped out of my three-story window but I was going for a walk and got busted up real bad when I hit the ground and I decided then that it has to be this medicine that's making me crazy so I told the general surgeon who was my doctor at the Army hospital I told him I refuse medication and that's when he decided to do an emergency surgery but my mental health I never had problems before this and all I can relate it to is just that medicine and it never has left me I went in and out of mental institutions for years and right now I get help from the VA but I still have ongoing problems with my mental health and I'm 55. So this has been going on for a long time.

I’m sitting here with my mouth open!! Your hallucinations were so bad that you stepped out of a 3 story window!?! Wow! Mine were nothing like that and I was able to stay in the land of reality…though it was really disconcerting.
Are you having symptoms of ITP now?

No symptoms, just nice to have someone who has had this experience. The military has not been forthcoming in telling me everything. Back in Germany. I went from squad leader standing in formation at attention. All the company was at attention and I suddenly stepped out of formation screaming at the top of my lungs. I had no control and didn't know why I was doing this. Several very disturbing incidences. They removed my access to my weapon. I didn't know what was going on with me but it seemed like every time I took the prednisone 30 minutes later all of this would increase. Sorry for rambling on it's just nice to talk to someone who is familiar with this because I've been in the dark for so long. They still will not attach my mental illness to my compensation when all the doctors have clearly said they should.

I was told some very extreme things when I had this. I got sick on a Saturday night in my barracks was in the bathroom all night long and it was the worst sickness I'd ever had in my life I literally thought I was dying I barely was able to crawl down the hallway to a buddy of mine who I knew had a car when he woke up he jumped out of bed started getting dressed and he scooped me up and he carried me to his car to an emergency room off post I started getting Wells real soon I was feeling good but then all of a sudden all these doctors started surrounding me and then I was told my top blood pathologist in the Southeast section of the United States was called and he's flying in the next day. It was just always extremes with them like they were dealing with something new it was it was just too strange for me how all this went down. And how severe came back in Germany it was just so severe it it took no time to almost kill me both times that it happened. Then how the Army is just kind of pushed back on me throughout all these years with with trying to fight this.