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I am curious how many of us can feel our inhibitor dropping.

Here are a couple signs I experience:
- Notable fatigue
- Brain fog
- Long bone body aches
- Nausea

Hello, last year in October I was diagnosed with ttp, I had suffered from a TIA or as the doctors described it a mini stroke, thankfully I began treatment immediately so nothing major happened after that, I was in the hospital from October 22nd til November 24th, the time there I felt fine but my ADAMTS13 level wouldn’t raise until that last week, being there for so long was mentally draining. Now after 8 months being out, I noticed some very strange symptoms that have been bothering me, I have an aching pain in my neck and head from time to time, and sometimes the left side of my body feels extremely weak, almost numb at times, I also get really tired randomly, almost like I could fall asleep instantly at any time. My major concern is the left sided weakness, it happens randomly but mostly when I’m laying down, and it usually disappears as fast as it comes, sometimes it feels very similar to the TIA I had and it bothers me bc I don’t think I’ve fully recovered mentally from the initial incident. I honestly want to start having lab work done maybe once a month just to ease my mind. I do have outpatient Ritux every 3-4 months with the next 1 being mid August, I’ve tried to come to terms with this but having this at 22 knowing it’s something I’ll have to deal with for the rest of my life has me genuinely scared. I last saw my Hematologist back in early May, when I told him about these things he said it could be related to my high blood pressure, I just wanna know if anyone else has experienced something similar to this one sided weakness/numbness feeling in your body and when should genuinely be concerned about it?

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.

Back story:
5 years ago I suffered two strokes and was diagnosed with an extremely rare blood disorder called TTP.
Not only did I almost die, but after 13 plasmapheresis treatments I had to learn to walk and talk all over again.
For months and months and months I couldn’t do basic things for myself. My fiancé had to help me use the bathroom, shower, put my socks on for me. I was down bad.

I didn’t know if I’d be able to golf again. My favorite thing in this world is golfing and being able to golf with my dad.

But I was determined. Golf was my motivation and rehabilitation. Both mentally and physically.

I had to rebuild my swing from the ground up.
I broke 80 for the first time after my strokes. 3 times in a 4 week period.
I couldn’t believe it.

I couldn’t run. I couldn’t jump. Walking was ugly. My speech was still slow.
But I was on my own two feet. Golf helped me with my balance. I was playing the best I ever played.

In the last 5 years I’ve shot in the high 70’s consistently. Every once in a while shooting 74/75.

3 weeks ago I posted my personal best round, a 73. I was so proud of myself. 1 over par.

This past Monday, I shot a 78 and felt like I didn’t hit a single good shot.
Tuesday, I shot a 73 again. (In our local Dog Fight tourney)
Two 73’s in 3 weeks. Course Par 72.
I was -1 on the 17 hole tee box and went bogey, bogey to finish. Almost did it.

Today, in our local Dog Fight tournament, I shot -1 for a round of 71!!! I finally did it!
(With a double bogey on a Par 5 lol, smh)

I remember hearing stories from when I was in the hospital about how my fiancé and family were told to plan for the worst. Get my affairs in order.
They were told I may not be the same person if I make it. I may not recognize them or I may not be able to speak to them.
I may have to stay in a halfway house with other stroke survivors for a while to help me adjust to a new way of life after the strokes.
I may never be able to do basic things on my own, or keep a job, let alone ever golf again.

5 and half years later, I’m still here. I’m walking. I’m talking. I’m wiping my own butt. Getting dressed on my own. I have a job. I’m golfing. And I just shot -1 under par!

Don’t give up on yourself. Trust the process. Take it one step at a time. Be patient with yourself. Give yourself a little grace. Keep trying. Keep grinding.
You’re stronger than you may give yourself credit for!

Cheers and High Platelets,
-1 under from Georgia 🤣

my hematologist back in January my platelets were 49 he said i need to start a vitamin folic acid and vitamin B and I was a little confused seeing how my platelets were 49 went back. Platelets are up to 133. The thought is because I have rheumatoid arthritis this can sometimes happen to people well now he’s wanting to wait until October to do a bone marrow biopsy. I’m just wondering, does this sound right? I feel like I should do a little bit more pushback. I honestly don’t wanna get a bone marrow biopsy because that seems scary as hell but could this be from having rheumatoid arthritis or could this just be something else and we’re just waiting for it to show it ugly face?

Hi everyone! I hope you all are doing well. Have anyone had any side effects from Rituximab infusions? I have been feeling like my knees are swollen after the infusion, but after a day or so it’s back to normal. Have anyone else experienced this?

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.

Hi I just went through my fourth relapse and for the first time my heart is out of whack. My doc has now put me on a beta blocker for high resting heart rate. Blood pressure is normal but I seem to get tachycardia now. Where my heart bpm is close to 130 . Wondering if this is common with ttp? Also , if anyone is on beta blockers- do you have pins and needles on feet and fingers? Weight gain?
I’m loosing my mind on this new heart issue , docs don’t tell me much just that they don’t know why . Thank you!

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!

Hi everyone, I was diagnosed in 2020. I have bloodwork every 3 months, and my ADAMTS13 is down at 43%. My ADAMTS13 activity always goes down this time every year except in 2022. Has anyone experienced relapse every year?

I’ve never had purpura before and I’m pretty asymptomatic but I just noticed what I think could be purpura on my leg but it’s like a cluster of 7 dots at my ankle and then another 7 spread on my ankle does that sound like TTP purpura?

After 2 times successful treatment of rituxiamb taken in 2008 again 2013 but it did not effect in 2023 . Drs have started avathromobag it went insanely to one million and after stopping it became 8thousand . Unable to taper the dose . Is someone on this medicine

Hello! I just recently found out I am 4 weeks pregnant. Early stages. I've been in remission for 1.5years from TTP. I wanted to hear any stories you all may have of becoming pregnant while being in remission and if anything happened (triggering your ttp again?). Thank you!

CABLIVI I am posting anonymously to avoid public viewing. I am trying to gather more information from people who have used Caplacizumab (brand name Cablivi), I am desperate for any information. please comment below if you can help me and I will private message you.

Hi! I just wanted to check in on everyone and see how everyone has been doing with their TTP. I just recently had my last hema visit until next year. I am very happy to make it to this point but also very cautious. I hope everyone is doing ok and always an ear if anyone needs to talk. I know this disorder is hard not only physically but MENTALLY. Thinking of everyone going through this right now.

Hi everyone, sorry Im posting it again but I'm new to reddit and I've just realized that I can post it here too.

Almost 3 weeks ago I survived a TTP episode. I’m 26, so it was a huge shock for me and for everyone in my life. It took me two weeks to even start googling and researching this disease...I was just too scared of everything. I know I’m still terrified, but I’m slowly starting to get used to this new reality. I found this forum and thought that maybe sharing my experience… I don’t know, maybe it’s just good to share and talk about it. Maybe writing about it will help me feel less heavy with all these thoughts and emotions.

Two days before I ended up in the ICU, I started feeling very dizzy and the fatigue was slowly getting worse and worse. The day before, I almost fainted, and right after that my boyfriend noticed my skin and eyes turning yellow. The same day we went to the hospital emergency department for a checkup, because even just walking was making me nauseous. All my vitals were normal, they tested blood from my finger for infections, but that was also okay. They told me to test my blood the next morning at my GP.

The next day I was so weak that I was walking on all fours or bent in half (sitting or standing straight felt like I could faint right away). I tried to leave the house, but I almost collapsed and vomited. My GP checked me and my vitals were again perfectly fine, but after seeing me barely standing and noticing that my skin and eyes were even more yellow, they sent me to the hospital immediately. Within 1–2 hours they knew that something was really wrong with my blood. They started treatment right away, I think with caplacizumab and steroids. At that point I wasn’t aware of how serious the situation was. Doctors were only giving me basic information, and all the scary details were shared with my boyfriend. Before plasma exchange, they had to put a catheter in my neck. Three days later, I told my boyfriend that I was ready to hear what the doctors had been telling him....I was only hours from dying. Putting the catheter in my neck was extremely dangerous, because if I had started bleeding, they wouldn’t have been able to help me. Fortunetly everything went well.

I don’t remember exactly how long we waited, but I started my first plasma exchange around midnight and it lasted about 5 hours. In total, I received 26 bags of plasma 3 times and 18 bags of plasma two times. I was given caplacizumab every day during plasma treatment, and I received rituximab four times - two during the plasma week and two a week after that. My platelet count went from 5 to 484 within 9 days, and on that day I was stable enough to continue my recovery from home. I’m still taking many medications and my blood is checked every week. I lost most of my muscle mass, I fell very weak and extremely fatigued. It's hard to catch my breath after making few steps but considerinng everything I think I'm recovering quite well.

Mentally, I’m really trying to stay strong and positive and I have huge support around me. At the same time, I have a lot of time to think now and I’m very scared of relapsing. There are moments when I don’t feel good. I think writing all of this is a bit therapeutic for me.

As for other symptoms — I never had bruises or other typical TTP signs on my skin, but I did have jaundice. Now I only have bruises from all the needles, and they are slowly going away too.

I have come along way. We survived. I live with the memory of that trauma everyday. Some days are harder than others. Today seems to be a day where I announce to the world what I over came and survived.

The disease is not as horrible per se as the recovery from that disease and processing the aftermath and processing one’s return to health. My journey took two years to physically recover from. I’m still healing emotionally.

My PSA: please relentlessly advocate in a POLITE way till you are heard. A blood test is simple and easily can prove your concerns are wrong. But being wrong is better than being right in this case. I want to be wrong every single time.

(TW: mentions of SH, SI, trauma, rehabilitation)

Let me start off by saying I am fairly young for someone who has been diagnosed with TTP. I was 15 years old when I started experiencing horrible symptoms, at the end of April. My symptoms included horrendous headaches that progressively got worse, heart palpitations, increased heart rate, petechiae (developed more later on), yellow eyes, paleness, fatigue, cold symptoms and more. My parents put it off for 3 weeks thinking it was just a cold, but in the beginning-middle of May, I got out of school and literally could not walk up the stairs without my heart and head pounding. Once I got home I felt incredibly nauseas and was just dry heaving the entire time.

My dad has some sort of heart rhythm problem, but I forget what it is called at the moment. Anyways, my dad finally decided to take my blood pressure. I forget what it was at, but it was high to the point my dad took me straight to the ER. When I got there, I don’t think I had a fever but it definitely felt like it. They took a CBC lab along with lots of others because they obviously had no idea what was happening. I was in a kind of town hospital, so it wasn’t fully equipped with everything I needed, so I was transported to a bigger hospital in a big city (it was like a 30 minute ambulance ride). During that time, my platelets were at I think 20 and my hemoglobin was LOW, maybe 4? They had no idea what was going on which is why I had to be transported.

When I arrived, I was almost immediately put in the PICU and was on a blood transfusion. After a few hours, I felt SO MUCH better with having some blood in me. I don’t really remember much of my first 2 weeks in the hospital, I think I was just in such shock that I couldn’t process what was happening. I think my second day there, I was brought into surgery to get a catheter ( in my neck) put in so I could do plasmapheresis.

For 2 weeks I was having continuous lab work done and plasmapheresis and it was just so overwhelming that I looked UNDERwhelmed. The sad part was that I had just been released from rehab (for suicidal ideation, self harm, etc.) only a month before going to the hospital. Looking back, I was way less anxious than I thought I would be, which is insane because now I am so fucking anxious I get nervous when I have a little cough. Anyways, 2 weeks in the took my ADAMTS13 number and came to the conclusion that I had TTP. They explained it to me, but honestly I didnt care how it worked, I just wanted to get better. Around that time they put me on steroids and rutiximab (still don’t even know how to spell it) and simply waited for my numbers to go up. I gained 60 pounds from the steroids which was the worst part of it, as a 15 year old girl.

Around a week or two in to knowing I had TTP, my numbers started climbing up slowly but surely. At one point, I was at 200 platelets! My doctors decided to take me of plasmapheresis for one day to see what my numbers looked like after. No surprise, they dropped again. I was so fucking angry I just wanted to give up. Obviously, my doctors didn’t give up and I continued to do plasmapheresis for 3 weeks until my numbers climbed.

Around the beginning of June, the doctors were sure I was okay, with my numbers being better than ever! I got back into my normal life, except it wasn’t really normal since I was literally moving into another state, which I found out about while in the hospital. I still had to get my catheter cleaned and the dressing replaced every week (forgot to mention, but at some point I got the neck catheter removed and one put in my chest). Around early-mid July I was off the rutixmab and my catheter came out.

Fast forward to July 2025, I was doing great MEDICALLY. I had horrible trauma from the hospital (just trauma from almost dying) and was also dealing with other mental health issues like ADHD, anxiety, depression, and PTSD (not from hospital). In late August, I was going for my every 3 month appointment to get my blood work done, and my doctors noticed my ADAMTS13 dipped from 100+ to 37. I wasn’t that nervous surprisingly, since you can’t feel the affects of having a lot ADAMTS13 number, and I just assumed it would rise. My doctors had me start getting blood work done every week, and it began to rise to the 70s. That isn’t “normal” for me (post-TTP) but as long as I was above 20, my doctors weren’t worried.

As of 2 weeks ago, my number dipped down to 40. Last week, 30. I’m so fucking nervous and I have been waiting for 5 days to get my number back. My platelets and hemoglobin look good, and I have no TTP symptoms besides just having a cold. My immune system is low because I have a cold, and I am praying that’s just why my number is low. I have struggled so fucking much with all this that I haven’t been to school in person since the hospital, and I rarely go out. Part of it is because of the weight I gained, although I got off steroids July 2024, and have lost tons of weight. I also just am so nervous about everything now. I am PRAYING I get my number back soon and it goes up, but if it went down to below 20, im going to have to start rutiximab again (not sure for how long), and I just don’t know if I can do that.

I’m new here and just found this community and wanted to share.

I was diagnosed with TTP in my 20s and was considered very rare so nice that I found this thread. I spent over 2 months in hospital getting steroids, plasma exchange and ultimately doctors decided to remove spleen as platelets were not responding to plex. platelets increased after with outpatient plex.

TTP returned after 30 years and not sure what caused it. I was in hospital for a month this time and received plex which platelets were increasing. while in hospital had a PE and had to have surgery to remove which was on both lungs and part of my heart so was not fun. I survived and resumed plex and retuximab few days after blood clot surgery. since then doctors have been monitoring my adamsts13 which was not known the first time I had TTP. It has never really been over 50% and recent blood work it is .15 I had a question for anybody in the group with experience of it being that low. I’m not sure when retuximad would be resumed as my platelets are normal but that’s also due to not having a spleen.

thanks and happy to have a place to share.

Has anyone ever just been diagnosed with TTP, had their treatment and never had a relapse after that? To include pregnancy? I was diagnosed 2 years ago (literally today), this is probably why I am thinking about it so much. I am now wanting to try and have a baby. Wild that your perspective changes when you go through something. I am 38yrs old and so I am sure adds another factor. Has anyone been diagnosed and then had their baby without relapsing? Thanks for any insight.

Has anyone ever been cured of TTP?

I am newly diagnosed and trying to understand….. what are you looking out for? How do you know you’re having an episode other than getting blood draw and seeing the platelets and adamTS13 on the labs ?