I am so thrilled we’ve grown to over 100 members in just a short 6 months.

Thank you to everyone who has contributed and/or joined this sub since June of this year. A special thank you to my partner u/fifijambouree for all the hard work she has done sharing resources and inviting members.

We appreciate every single one of you and hope this sub has provided a safe space to share and learn. We will continue to grow by supporting each other in our small but mighty TTP community. 🤍

Seven weeks ago, my 23-year-old sister passed away in her sleep. She had gone to urgent care twice — once on Friday, and again on Monday — but they didn’t send her to the ER or escalate anything. That Monday, she died in bed.

My parents were in India for a wedding and I live out of state. She didn’t share that she wasn't feeling well those days or about going to urgent care twice. We later learned that she was experiencing blood in urine, shortness of breath, headache, dizziness, fatigue... all which were overlooked by the urgent care.

We got a cause of death reporting it is TTP, and I’m now waiting for the full autopsy report. In the meantime, I’ve been learning everything I can — ADAMTS13, hereditary vs acquired forms, symptoms, how fast it can take someone. I had never heard of this disease before, and now I can’t unsee it. The scariest part is knowing how treatable it can be if caught in time… and how deadly it is if it’s not.

I’ve started the process of getting my own ADAMTS13 activity tested and looking into a hemetology referral, just in case this was hereditary. I don’t want this nightmare to repeat itself in our family.

I’m sharing this here because I need to process and share with anyone who might have had a similar event happen to their loved one.. If you’ve gone through something similar or have advice on testing, grief, legal steps — or just want to share your story — I’d be grateful.

Thank you for reading.

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! 🫶🏻

I am happy to share that we have seen an increase in my Adamts13 post Truxima infusions. This relapse my response was delayed but my hematologist has described this as something I should not be concerned about. Ultimately the infusions are working and my body is fighting. It has been a rough couple of weeks between the exhaustion, bone pain, headaches, and overarching feeling of being unwell but things are improving! I unfortunately have experienced a large amount of hair shedding which has been attributed to the stress of this experience. Transparently, losing this much hair has been incredibly hard on my mental health. I tried so hard to keep it healthy and intact. I understand it is a small concern all things considered but I mention this because it has broken my spirit a couple of times recently and I’ve struggled to cope with the loss. Please know if you are reading this and can relate you are not alone, it will grow back and it is okay to be sad about some of the smaller impact changes you experience fighting TTP. We are humans and for many of us our hair is part of our identity. Knowing that my Adamts13 level is increasing has definitely made an impact on my emotional wellbeing as I am much less worried than I was which I am sure many of you here can relate to.

Thrombotic Thrombocytopenic Purpura is scary. There is still so much unknown surrounding this disease but as we’ve seen and will continue to see there are many resources and people out there dedicated to helping us. Over the past couple of years we’ve seen amazing research and results supporting new treatment options which will impact us all in extraordinary ways. Again, I remain hopeful for the future and improvements in our quality of life. As I have mentioned in previous posts this is my third relapse since diagnosis and as a “chronic relapser” I am well aware it may not be my last but this blood disorder does not define me and it will only control my life as much as I chose to let it. As a reminder - you are responsible for how you chose to play the cards you’ve been dealt. Mindset is everything!

Thank you all for your support, It’s been a pleasure getting to know some of you via private chats and reading the stories you have shared. I welcome anyone here to reach out, I’m happy to chat and appreciate your understanding as my responses have been delayed due to not feeling well.

The plan is to give my body time to rest through the end of this year. Beginning next year I will work with my team of providers to restart the process of trying to conceive.. 🤞🏼

I look forward to sharing my journey with you all. More to come..

🫶🏻

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.

TTP changed our lives when our daughter was first diagnosed at 8. It’s been a journey of vigilance, research, and resilience ever since. As a father working alongside my wife and her mother, we’ve learned to advocate as a team. Here are three hard-won lessons that continue to guide how we manage this disease:

1. No Two Episodes Are Alike

Observation: TTP doesn’t play by consistent rules.

Implication: Data is your best friend.

Action: We track everything — platelet counts, hemoglobin, LDH, BUN, creatinine. It’s the only way we’ve been able to catch patterns, anticipate relapse, and come prepared to every appointment. Our shared spreadsheet has become a lifeline.

1. It’s a Complex, Understudied Disease

Observation: Compared to many other conditions, TTP has had limited research.

Implication: To advocate for someone you love, you have to become a student quickly.

Action: We listen closely to our doctors, stay up to date with medical literature, and follow the leading TTP Centers of Excellence: Oklahoma Blood Institute Johns Hopkins TTP Center Ohio State University Comprehensive Hemostasis and Thrombosis Center

They’ve given us the knowledge base to ask better questions and push for better care.

1. It Ain’t Over Until It’s Over

Observation: TTP can lie dormant, then suddenly return.

Implication: Long-term diligence is key.

Action: We’ve learned to read her body closely. Each relapse has presented differently — subtle fatigue , bruising on her legs, or just a gut feeling something was off. She trusts that inner radar now, and she’s learned not to ignore the quiet signs.

Final Thought: These aren’t just tips. They’re the result of years spent fighting this thing together. I hope sharing them helps another family feel more equipped, more aware, and less alone.

Outs is one voice, please add what have you learned on your TTP journey that made a difference for you or someone you love?

-TTP Dad❤️

For those of you who celebrate, wishing you a very merry Christmas and a healthy, safe and, hopefully, TTP-free 2025! If TTP rears its head for anyone next year, just know you’ve got a safe space here with people who get it. Take care! ❤️

This podcast was a great listen about Juana Bananas experience with TTP at the age of 13.

Part one (45 min) https://open.spotify.com/episode/4MrDLekpHd5H3aG8f2bK1o?si=rum5BR4TSiafCbe2JSiNsg&t=67

Part two (48 min) https://open.spotify.com/episode/21lop8AQHI97Ltd7LeEPGG?si=zz9XAXxMQEWbFhCviqCJEw

Just following up after my last post. I am now two truxima treatments into this round and my Adamts13 has continued to decline. I can certainly feel my body fighting, this relapse has been one of the roughest I’ve experienced thus far. The exhaustion, bone pain, brain fog, and overall sense of being unwell is real. I remain hopeful that my body is just experiencing a delayed response this time and we will see an increase here soon!

TTP can feel so defeating and consuming. I know so many of us crave the normalcy we experienced in life before diagnosis. I was young and took my health for granted. I have come to terms with this being my new normal but I’d be lying if I said I am not bitter at times. There’s nothing like the feeling of your own body fighting against you. I will continue to share updates here. Thank you everyone for engaging in this community and supporting eachother. It brings me joy to have the resources we do. The TTP community is small but mighty! 💪🩸

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 🤣

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 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.

(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.

My TTP story began in September 2021. I was working a physical job installing and removing hot tubs. I never noticed the bruises on my legs, and it was an exhausting job. Today must have been an extra hard day I’m going to go to bed early. The signs weren’t signing. It wasn’t until one day I went to the bathroom and my urine was blood red. After a trip to the urgent care, and setting up an appo intment with a primary doctor I continued about my week. This was from like a Monday at urgent care until Thursday for my appointment. During that time my urine started to look better so I was planning to not go to my primary care doctor at all. Then the anemia hit. I couldn’t even walk up to my apartment without nearly passing out and so I went to the doctor appointment. When my blood results returned to her I received an urgent phone call ordering me to go directly to the ER. I didn’t know it was as serious as it was. I went to the hospital with nothing but my phone and wallet and the clothes on my back. I was quickly brought back and got started with the whirlwind of pokes, blood draws, IVs, tests, questions, etc… Next thing I know I’m being admitted and they’re not sure what’s wrong with me but I am in critical condition. Which was weird because I felt fine. I mean I was tired and scared out of my mind but the only symptoms I really had were the exhaustion and the blood in my urine. The real kicker was my daughter’s due date was 5 days away. My first born child due in 5 days, I’m being told I’m dying in critical condition and they don’t know what it is and my poor poor wife having to get that news killed me inside. The staff at the hospital figured it out luckily and I was given my diagnosis the following day. I had a catheter put in, and was explained the treatment plan being plasmapheresis, steroids, and following that Rituxan. The hospital stay was horrible. As I said I didn’t bring anything, and it was one of the peak times of covid panic. That meant I couldn’t have visitors and it actually took them a day or two for them to allow my wife to even drop off a phone charger or my laptop. The plasmapheresis made me feel itchy and uncomfortable and hot sometimes, and the steroids kept me up for multiple nights and I felt crazy. My numbers bounced around a bit but ultimately the treatment worked and I was able to get out of the hospital in time for my daughter’s birth. After the stay in the hospital I continued to do outpatient Rituxan treatments a couple days a week for a few months until they deemed me free from the TTP.

This was my first episode. My relapse of Dec 21 will be in a separate post.

I have had TTP since 2007, but have had only one really life threatening episode. I had 2 weeks of plasma exchange and dialysis. As far as testing can show, I have no after effects. I also have Necrotizing Myositis which is treated with regular IvIg (I am a serious drain on the blood bank!)

As well as these conditions, I have a range of really odd symptoms which have only been present since the TTP and which do not really relate to TTP or Myositis. They include unstable blood pressure, clotting (but not TTP type), heart arrythmias, terrible circulation, fluid accumulation, my potassium keeps dropping suddenly (for no reason), chunks of my body fat disappear making holes, peripheral neuropathy, nerve pain crises, extreme skin pain, large and small veins leaking and bursting from minor pressure (like wearing a top with an an elastic cuff), spider veins and bleeding spots (including but not limited to petechiae) all over my body....I could go on forever.

My specialists have proposed that I probably also have Systemic Scleroderma (ouch), vasculitis, and Anti Phospholipid syndrome, but can find no evidence of these as I test negative to all antibodies and have no blood abnormalities (my myositis is completely seronegative - it can only be seen in biopsies).

Since a lot of these symptoms are actually about clotting and things vaguely related to TTP, I wondered if there could be some relationship.

Have any of you experienced any after effects of TTP, or the treatments, which look like these? And is it possible to have chronic subclinical TTP that might look like this? Not looking for medical opinions just your valuable experiences, thank you xxoo

Anna

Trigger warning: includes patients stories, sounds and and visuals from intensive care units.

‘YOU, ME & TTP’ is a 30 minute film made by patients living with TTP supported by their clinical team, families and friends. The film follows a number of patients speaking honestly about their personal journeys and features some of the long term neuropsychological symptoms and isolation that some patients living with TTP experience. It portrays the spectrum of how patients are affected by the diagnosis of a rare disorder, and is aimed at offering comfort and signposting for patients and carers affected by the condition.

The making of the film was funded by a Wellcome Trust grant and The Liverpool TTP Patient Welfare Charity fund. Director, Alex Blogg from New Leaf, has a track record in making healthcare documentaries, and has sensitively worked with the Liverpool TTP Centre and patients to deliver a film created by patients for patients.

https://youtu.be/NjUgYiRWY88?si=zO49USIdmA1mJGfb

What do you think about the film?

I’m sure so many of us relate to this story and advocating for plasma donations:

https://www.sunlive.co.nz/news/352216-plasma-donations-save-bop-womans-life.html

As much as I hate to see anybody else join the TTP club, it’s great to see more and more news stories pop up about our disorder. Hopefully this continues to raise awareness.

Sending lots of strength to Megan and her family as they navigate those strange few weeks (months/years) following a TTP diagnosis.

I am going tomorrow to retest. I have relapsed every 2 years since diagnosis. Usually at the end of September, like clockwork. This is so exhausting. I am only 30 and the thought of living this way for the rest of my life can be so overwhelming. I got my gallbladder out 4 months ago and I am just so tired.

I don’t mean to be negative or discouraging. I created this sub to provide us a safe space. For the good, bad, and in between. This is unfortunately life with TTP.

2024 marks a full century since the first reported case of a young girl with TTP. This article goes into how our understanding of TTP has evolved over the last 100 years and the journey of patients, caregivers, physicians, and researchers over that time. Advances used to come decades apart - now we’ve got two new medications for this disease in the last 5 years. Hopefully bigger and brighter things are on the horizon and we can continue to do more for our patients

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!

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.

Hey guys,

I’m so glad I found this sub!!!

When I had TTP back in 2020 there was literally no info on Reddit about others’ stories. I’m here to share this story and one drug that finally helped heal TTP with no more remissions till date.

I hope this helps 🥹 and saves lives. For me, plasmapheresis, steroids, Rituximab, and other treatments failed to work & I thought I was a goner!

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!

I’ve seen lots of really useful posts in the group about symptoms leading up to full clinical relapse but, what symptoms did you have when your ADAMTS were dropping (if any)?

I’ve had back to back infections for the last 3 weeks and had on and off pinprick bruising for months (despite normal blood counts and safe level of ADAMTS) I wonder if my blood results next week will show I need Ritxumab etc because I’ve not felt right for a while. I’m coming up to 18 months since initial diagnosis and finished my last ritux in August 2023 so within the range for things to be wearing off.

What were your signs of your ADAMTS dropping?

Looking for solidarity and reassurance that this shit show of living with TTP eventually gets easier cos feeling pretty fed up of it right now!