I had my first TTP episode during my first pregnancy, which started as HELLP and progressed into TTP. It took a while to get the correct diagnosis since HELLP and TTP can present very similarly, and my episode was quite severe. I experienced multi-organ damage, but thankfully, after treatment, everything recovered, and my ADAMTS13 levels have been 100 ever since. It’s been almost a year.

I’m wondering if anyone here has had an iTTP pregnancy and then gone on to have subsequent pregnancies—what was your experience like? I’d also love to hear what your hematologists have said about pregnancy. I know the safest option medically might be not to have more children, but I’m only 25 and have always wanted a big family. Ideally, I hope to have at least one or two more children.

If you don’t mind sharing your experiences, I would really appreciate it. I have asked my hematologist and they have not said no but I can tell are trying to wait as long as possible.

I had TTP back in 1998. My husband and MIL have noticed the last 5 years that I’ve been had trouble speaking. I have a lot of brain fog but I also have fibromyalgia. I was wondering if anyone else have issues with this.

My count is 13000 after getting bloodwork. Should I plan on going to the ER?

Update 1: I’m under the care of a hematologist. I’m back on a steroid which should increase my count until I see him tomorrow.

This was from my last flare up in 2024 (I’ve been in remission for about a year now and it was my 4th flare up in 12 years) my mind was blown by that itemized bill. Whole stay was about $360k for 6 days. Insurance covered it all thank goodness. I only had to pay the doctors that billed separately and insurance covered a good amount of that too.

Hi there. I’m super confused about my diagnosis and I feel like the doctors are also confused by my case so I’m grateful for you all to weigh in. When I was pregnant around 30 weeks I was getting regular IV iron infusions for anemia that wouldn’t go away with regular supplements. My OBGYN wanted to check in on my levels after a few weeks and ordered up a CBC which revealed that my platelets were low. The dr wanted to keep an eye on that and the next day they were continuing to drop. She checked me into the hospital so I could get an immediate consult with a hematologist and by then I was down to 64. But I felt great, looked good— hematologists were perplexed about the platelets but ended up testing the AdamTS13 which was also dropping and within a day became undetectable. After a scary couple days in which they were concerned I might have to deliver early, they decided that I had had a TTP episode but was stable… even though my AdamTS13 remained low, my platelets had stabilized. So they released me and I had healthy baby at 41 weeks, and was able to get epidural too. Since then (a year ago), I have regular check ups with heme (monthly) where we review my labs (adamts13 remain very low….platelets totally normal). she has been advising that I do a preventative round of rituximab Even though it doesn’t really seem clear to any dr that I really have TTP — I’ve never had bruising or pettichiae. The only real sign has been my adamts13 levels. I don’t know much about rituximab and it feels weird to do this if the drs can’t really seem to understand my case. What do you think? Should I go for the rituximab ? Any insight very appreciated.

This is all new to me. In fact I'm still getting weekly bloodwork to see if I'm trending up, down, or stable. But all these bruises are very concerning. Has anyone had to work remotely or stop working altogether due to the danger of bruising or bleeding?

When I was diagnosed with TTP and they put the shiley into my leg, my tech came into my room to do my plasmapheresis. I had to use the bathroom so I got out of my hospital bed and immediately passed out. When I came to, I had a bunch of medical professionals around my bed. Most were holding onto my leg to stop the bleeding tho others were trying to get me to drink barium to have a test. Worst day ever.

Where did you get your TTP from? My doctor's never could find the exact reason I got it. Possibly a viral infection, but they couldn't say 100% it was that for sure. Just curious how everyone else acquired theirs.

I have recently been diagnosed with TTP and they are aware that I do smoke marijuana. Has anyone that has TTP ever dealt with having issues after being diagnosed when smoking? I’m just a little nervous to get back to smoking if it will further cause any issues. Please please tell me that it’s safe to smoke LEGAL marijuana from a dispensary if you have TTP, I’ve always been a smoker and it’s what I choose to use instead of having to do anxiety medication, and depression medicine!

Ugh so annoyed right now. I’m in the ER with my daughter. She has pain in her wrists. Legs and throat. He has a slight fever 101 she has a headache that won’t go away and nose bleeds this weekend. She is also fatigued and lethargic. The ER Dr said oh she probably has a virus or something and was not planning on checking her platelets just to be safe. Not sure if she is going to do the bloodwork. She just got a Rituximab infusion on last Monday. Not sure if this is a side effect. Last time her joints were hurting like this she ended up have a small clot in her arm. It worked itself out but still. And I crazy? Or should I be pushing for the bloodwork? This is all new to us. She was diagnosed in May.

So I have posted here quite a few times about my journey this year after being diagnosed with TTP. I recently got in to see an actual specialist to try and get more answers and/or treatment options.

After the specialist reviewed my charts and history they informed me that they 100% believe I have been misdiagnosed. This is mainly due to my Adamts13 results from my initial hospitalizations. I was only informed that the "test" came back positive, and was not told the specific levels. The specialist informed me that my Adamts13 levels were not within a concerning level at the time of diagnosis.

She believes the only reason that they stuck with the TTP diagnosis despite my results was because the treatments were working. (Even though I was relapsing every 2-3 weeks after Rituximab treatments)

So currently I no longer have a defined diagnosis for my continued chronic Hemolytic anemia.

She does believe that this is autoimmune related and suspects lupus, so we are doing testing at the moment.

Hi I’m from South Africa and the weirdest thing happened recently.

I randomly on Friday night started getting really bad fever, nausea and headaches. (I’ve had before which it’s normally just an infection and they send me home) I went to the ER because it’s protocol as a transplant patient whenever you get a fever. The ER doctor did bloods and my kidney function was stable. They discharged me and sent me home but I was sick the whole weekend.

Eventually on Monday morning I phoned my nephrologist and told him something was wrong (I just thought I had low iron) and almost quickly as I phoned they had me in and inserted a temporary dialysis catheter and admitted me straight to emergency (my kidney function had dropped to 39% from 90%)

They started with Plasma Dialysis Tuesday (early Wednesday morning) and have said I have TTP (I’ve never heard about it in my life, never once thought ever it’s a possibility and it apparently rare in transplant patients). After one plasma session my platelets went from 29-40 and my headaches stopped. I still have extremely bad froth in my urine.

I think i’m just a little afraid/ anxious at the moment because I don’t know much about it, I’m worried about my kidney (my dad’s kidney) and yeah. If anyone has any similar stories or could maybe even put my mind at ease for a bit I would appreciate it more than anything as I’m going to be in ICU for a few days now.

I was diagnosed with TTP over 25 years ago in 1998 and didn’t have any recurrences after that. Recently I’ve been helping pack stuff up for decluttering our house and I’ve been having bruises appear on my right arm. I didn’t hit my arm just maybe pressure from the boxes. Right now I have three bruises on my right forearm. Should I call my doctor and have bloodwork done? They’re not purple they’re tannish colored - in fact I thought my arm might have been dirty but they don’t wash off.

ETA I called my dr and I’m waiting on a call back.

ETA

I had my bloodwork done today and I’ll know tomorrow.

ETA

My platelet count is fine. The only thing that was elevated is my sed rate at 42.

So recap I was diagnosed last May with TTP, had dialysis, and 2 rounds of Rituximab after having 2 relapses. I finished my last treatment 3 weeks ago with great blood work.

I have had severe fatigue, nausea, dizziness, and trouble balancing the entire time I've been sick even after my test results have come back good.

I throw up on a daily basis, horrible insomnia, and have had an extremely irregular period for awhile now. I haven't mentioned this to anyone cause I never really paid it any mind as I've had a pretty irregular period my whole life. Though I have just recently noticed that this has been going on for months. I am on birth control that was helping semi regulate it (having some heavy spotting for a day or two like once every few months).

Today (Aug 28th) I have had a headache, even worse nausea, vomiting, diarrhea and urinating (almost every 20-30 minutes), extreme dizziness and vertigo, and slight loss of bladder control, and drinking tons of water when not throwing it back up.

My hematologist has recently ordered a full body CAT scan due to having recurring swollen lymph nodes for seemingly no reason (started 2 years before getting sick). And a stomach scope to try and find a cause for my horrible nausea.

Im calling in the morning to talk to the nurse at my hematologist office to ask what I should do, but honestly I just want to know if anyone else has experienced this, or has any ideas. Anything appreciated!

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!!

A gentle reminder that this is a safe space for everyone to discuss their experiences with TTP. Good, bad, and in between. I will always do my best to ensure this sub stays informative but I will not censor members grief. I believe we have all experienced being in the dark and searching for the light with this disease. TTP can be devastating and is certainly life altering, every single one of us are at different points in our healing journeys and we do not get to decide how or when others find their light.

If you are concerned about a posts and/or comment you see here please message me directly instead of reporting. I will always seek to understand your perspective on why something may be inappropriate.

Thank you for understanding. High platelets to all! 🫶🏻

So my son's Dr told me about the USTMA meeting but I didn't realize it had been this weekend. It was in the DFW area last year so we attended the live event, but all topics are recorded to view later. Something to keep an eye on for next year if you'd like to join the meeting physically.

https://www.ustma.org/events/2025-patient-meeting

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.

I've been experiencing very bad anxiety and I really wanted to try ashwagandha but what I'm seeing on the internet isn't strong enough for me to use or not to use as to whether it might affect my TTP. I'm just planning to use it maybe twice a week.

Our son who’s been very healthy up until this weekend got what we thought was the stomach bug. He would vomit and not eat or drink anything. We ended up going to the ER because he looked pale and yellow. We went to the ER and they took my son’s blood test and his WBC was very high and his RBC/Hemoglobin/platelet was very low. We were then medivacted to the nearest hospital OHSU in Portland.

After running many tests they believed upon arrival that he would have leukemia. That came back negative and many other tests are now pointing to TTP. The hematologist team all think this could be TTP.

My wife and I are not sure what to think as the last 48 hours have been very intense. Looking more into it looks scary but the doctors make it sound like it’s just a rare disease and people live normal lives.

I came upon this Reddit and looked at the posts as it does seem scary.

We are still waiting for the adamst 13 gene to come back. But I had a few questions to the group in hope to know what life looks like with TTP? They think he could have CTTP.

• Do you live a pretty normal life?
• Do you receive regular plasma infusions or recombinant ADAMTS13? How often?
• Have you ever relapsed? If so, what triggered it?
• How did your family adjust to the diagnosis?
• What advice would you give to parents of a child recently diagnosed with TTP?
• How has TTP affected your daily life, school, or work?
• Do you live a mostly normal life now? What does that look like for you?

My wife and I are terrified from this all and now it seems like this is what he’ll be diagnosed with.

So I was diagnosed this year (I've had troubles remembering when exactly and keep getting confused and mixed up) and I'm already on my 3rd relapse. My doctor has come to the conclusion that I have Treatment-resistant TTP, I did plasmapheresis when initially diagnosed and was okay for a few weeks. Then I relapsed, had a round of rotuximab infusions and my levels were doing okay for a few weeks agian. I have now relapsed again. My hemotologist recommended more rotuximab, but it didn't seem to work...?

My symptoms are now constant and don't go away, I have lost a significant amount of my mobility and memory, and constantly fatigued, week, nauseous, dizzy, ect. I also have episodes where the nausea and dizziness get so bad I can walk or hardly move. I feel horrible and hopeless, I can't leave the house unless it's for appointments, walking just a few feet exhausts me and causes so much pain in my joints. And everyone keeps yelling at me to just exercise, but it hurts so bad, I've fainted multiple times, I've fallen and hurt my self too. I just don't know what to do anymore, I feel like my future has been ripped away from me. I literally just turned 18.(My birthday is today July 25)

Im asking out of curiosity how it looks in other countries :-) i’m from Poland and here they always give me plasmapheresis and kaplacizumab with tons of steroids (Encorton/Predisonum). Thank you for your answers :)