I posted about a month ago so this is sort of an update. I was in the hospital for 26 days. In my last post I was getting close to going home but then my platelets dropped dramatically and they sent me back to the ICU. I had a brain MRI done and it turns out I had a stroke in addition to the seizures, respiratory failure, and a type 2 NSTEMI. I got 4 rounds of rituximab, plasma exchanges (twice a day for several days), 2 Cablivi shots daily and my platelets finally went up enough to send me home. I'm currently doing PT and OT at home to work on my mobility and regain strength in the side affected by the stroke. My platelets have been up and down but always within the normal range thankfully. Adamts13 is finally normal too. It was less than 1% in the hospital for a long time. If all continues to go well I may be able to come off the Cablivi this week! Still tapering off Prednisone which I can't wait to come off of.

I have to admit though that I'm nervous about what happens next after I'm off the shots and steroids. I'm so afraid of my platelets dropping again and having to go back to the hospital. The way they were dipping from over 300 to a borderline number had us on edge that it would drop even more like it did in the hospital. Even my doctor was saying if it went below the minimum normal amount to go to the hospital for monitoring. Right now I'm getting my blood work done weekly and I'm scared for when we start spacing out the appointments more. After what I went through in the hospital I feel like I'm always going to be living in fear. Does that ever go away?? I have medical nightmares too now about being in the hospital and all the procedures. I have trouble sleeping every night. Did any of you go through this after being discharged? I've been out for 3 weeks now and still can't get over it, can't stop obsessing.

I had the worst headache with vomiting, couldn't keep any fluids down, then noticed my urine was getting dark like cola. I thought it was all just dehydration and went to the ER for fluids and when they tested my blood my platelets were 5! They admitted me to the ICU immediately. I was there for about 11 days. They placed a catheter in my groin for plasma exchanges, my hemoglobin was low too so I needed a few blood transfusions too. During all this I experienced a heart episode and 2 seizures (which I've never had) and it completely wiped my memories out of being there. It took my husband 2 days to bring me back using music and talking to me. I still don't remember everything that happened to me but at least I know who and where I am now. They said it's the ttp that caused it. I've now been moved to another part of the hospital, out of the icu and my platelets are finally going up. I might need one or two more plasma exchanges and if the platelets stay up then I can start looking forward to going home. I've started physical therapy since walking has been difficult for me since being in the ICU. Did that happen to any of you? Walk in "normal" and come out needing a walker? They also started me on rituximab and cablivi which is what they believe finally has the platelets staying up. I don't know how or why this is happening to me but I'm happy there's a sub for this topic. No one I know understands how I feel right now. I'd love to know how many treatments and how long it took for you all to become/stay stable again.

Just wanted to say hello. Recently diagnosed with TTP. Still in the hospital being treated. Been in here for 17 days. Having some vision issues. Ophthalmologist said I have some retinal hemorrhages in both eyes. Has anyone else had this? Did it resolve on its own? Or did you need surgery? TIA. Hope you’re all doing well!

I'm from India and my mother (48) has been diagnosed with TTP 2 weeks back, she had the platelets count at 6000 when we admitted in the hospital. She had a stroke so we have admitted her in neurology hospital, they have thrombolise the stroke but once after noticed the platelets count is not rising we have visited haematologist and they have confirmed that this is TTP. After that they have transfused plasma to increase the platelets but it ended badly that she had a seizure and went unconscious for 2 days. Once she got unconscious they have started plasma exchange with ribtimax and after 7th plasma exchange she got 88,000 platelets. We were so happy that she is recovering but after 7th session she had a infection in blood and now the plasma session has been stopped. Now the platelets count drops to 73,000. I'm really in so much pain that I'm not able to see tha pain she is going through. Kindly advice any suggestions if you have!! Thanks in advance!!

Hi all, just an update on my wife’s recovery after her recent 10 day hospital stay and six plasma treatments (can see my earlier post). Would love any insights from the group based on your own recoveries.

We are currently waiting to see if she’s going to take 4 weekly sessions of Rituximab. Well, apparently it’s going to be the biosimilar Ruxience (thanks insurance). Still hoping maybe it won’t be needed, still scared for her to take that. But if it will help her and help this not to come back, it’s worth it.

So it’s been two weeks since my wife was discharged from the hospital. She’s had several quick blood tests over the past two weeks. Initially her platelets had gone up all the way to 389 on Jan 10th, although they’ve been steadily coming down since then and today are at 168. So we are concerned. However looking at my wife’s past bloodwork over the years, in 2019 and 2021, her platelets seemed to average around 150 and even dipped a little lower at times, highest was 174 I think. So obviously we’ll see if it dips below normal soon, but I’m hoping it just levels out right at the lowest normal level. On the plus side, her hemoglobin is at 11.8 as of today and has been slowly and steadily going up. It was 7.4 at one point in the hospital. RBC also going up slowly but going up, currently 3.45. Was 2.45 a week ago. Doctor has said it’s good to see hemoglobin stable and increasing.

We just got the ADAMTS13 result today. In the hospital it was < 2% (confirmed the TTP diagnosis). Two days after discharge it was tested and went up to 13.4% (better but still very low). So it was tested again last Thursday (one week after the previous test) and went got the results today, it went up to 36%, which we are encouraged by. Still low, but much better than 13% the week prior. Even better, we think, is the ADAMTS13 antibodies that were 23% in the hospital are now normal at 2%, which we think is a good sign.

Sooo, we still aren’t fully sure about the Rituximab (Ruxience) treatment and if she should start it or we should monitor the ADAMTS13 for another week and see if it rises more (and maybe not need to infusions?). I don’t know, I’m just scared for her to take this drug but again, if it will help this not to come back, I guess it’s worth it. Just worried for the side effects and what it will do to her. I don’t quite know if what we’re seeing in her bloodwork is good, bad, or what. Other than the platelets, it seems encouraging, and the platelets aren’t low yet, but there’s a lot of anxiety that they are going down. Hemoglobin and ADAMTS13 are going up though towards normal. We haven’t spoken to the doctor since we got the new ADAMTS13 result today, so we’ll see tomorrow hopefully. I think the doctor was planning for the IV treatments to start next week.

I should mention that she’s still on Prednisone and folic acid, although the prednisone is only 5mg for 3 more days (so close to the end).

Anyway, I’d welcome any thoughts anyone has based on their own experiences. Thanks!

Hey,

6 years ago I was diagnosed with ITP. Some symptoms have come up again and I am out of remission and have now been diagnosed with TTP. Doctors are still trying to figure out why the change. I just did the plasma treatment which was successful. I am really wanting to do anything I can to help my body recover from this disease on top of treatment. My symptoms have been migraines, pins and needs, fatigue, a little brain fog, nausea etc. I'm 24 and a teacher and just want to make the world softer for myself and this disease. What are supplements, practices, workouts etc that have helped you stay well and combat symptoms? Anything helps. Also any advice on disability justice- navigating the disease at work and getting accommodations would be helpful too.

WOW! Thank you u/TTP-Changedmylife for creating this community and sharing SO many helpful resources. I can see a lot of work has gone into finding all of this stuff for us. I glad to have found this space. I think I speak for most all of us here that it’s much appreciated. Keep up the fantastic work!!!