Thrombocytopenic Purpura Support Group

hello TTPgirl. I am 26 as well. have TTP; diagnosed 5weeks ago. next door to you as well lol, in OHio. wow I have lots of questions for you. I am still doing my plasmapherisis. been outpatient for3weeks,8days in hosp-plasma every day; then 3days a week; then 2 and now 1 till further notice. um can you tell me about that treatment you mentioned?-rutuximab. i haven't had that or heard of it. am wondering if you had it the first time u were sick or on one of your relapses? your platelets were way lower than mine. 12,000 for me when i went to the er. found a log i was doin on my heavey mentrals b4 i went and while i thought i had the flu- based on the dates i think i was sick for a week. was unresponsive according to my fiance when he called 911. he came home after work, saw ceasures b4 and thinks i had one; dr's agreee. my hemiglobins were 4- read that they supposed to be 14 in a woman, but the red cross told my that since ive been sick my range is 9.8. mine are like 10 or 11 now. I as well am in remission. just need treatments a little while longer dr says. not all the way well they say.when you relapsed, did you know quicker than when u inisially got sick. i mean- my theory is if i can reconize the sysmptoms surly the relapse can be caught a bit sooner ya know? um thats it 4 now. will think of so much more lolz. take care of you, glad you in remission. thx DeviousIntent

First of all, sorry that you was diagnosed with TTP recently because it is a hard road to travel through life. What part of Ohio are you from? Im about 15 minutes from Charleston (WV). Well I had received the Rituximab when I had relapsed back in February. I went to the hospital just to start the treatments but they done blood work and found out that my platelets were 7,000 and an hour later they were up to 8,000, so they had to put a line in and started the plasmpheresis. I've got to be pretreated prior to them starting the plasmapheresis. Im always anemic when I relapse, which I don't know if that is common with it or not. I've got to see my hematologist tomorrow morning and it's just a routine follow up with blood work everytime. Usually I can tell when my platelets drop because I get disorientated, trouble with my words (asking questions more than 2 times in atleast 15 minutes), really tired and weak, and sometimes I get petechiae (those little blood spots under skin). The conclusion that my dr came up with that makes me relapse is the ADAMTS13. Which the numbers on that was off the scale with the MayoClinic. He has been checking that for a while now, but I guess he will check it if my platelets starts to go down. I haven't had any seizures, but I have had my blood pressure to bottom out that I was on the stretcher to be transported back to the other hospital that I was admitted to and they had to raise my feet up. I told them that I was really light headed and then I was out. I hope this helps you. If you happen to have anymore questions, feel free to ask.
*Michelle*

hi again. I'm sorry to know the rooough time you've had with this. Yea I'm pretty aware of what I will be facing. Pretty well read on TTP. I'm in Columbus right now- out of town for my fiance's job. We live in Cincinnati- think its 2hrs or so from Charelston. I don't know if enemia is common. I was enemic when I went to the ER. I had the blood spots on my back; brusing: my kidneys were failing as well. the disoriant thing you mentioned- had that for days, couldnt log into my computer because I could seem to understand how to put in my password- thats just an example of how I was thinking. after 4days in the hospital I woke up on the 4th day not because of the disease but cuz I was fighting the EMT and the drs and the nurses. they had to restrain me and was full of whatever drugs they could think of to keep me asleep. after I woke up I waas repeating the same questions the same as you were. I didn't notice tho- my aunts keeps saying it. Had blood in my unrine too. seems like everything you mentioned went down when I got sick. yea a hard road ahead is putting it mildly i think lol. I'm glad you're in remission, and good luck with ya appt tomorrow. question about that, I never really asked yet if and how often I will go to the Dr to get blood tested for platlet counts. Is this something youve been doin the past 6 yrs? or do u just go by the symptoms you get to find out you are in the middle of relapse? I plan to ask these types of questions once the plasmapherisis stops as I will return to cincy and will need to see about where to go down there for blood testing and all that.oh I have an appt monday to discuss for the 2nd time if they can stop plasma. I plan to take it a little better than I did last time if they say I have to continue for a little longer. In remission 3weeks now. platelets 300,000 they went up from 200,000something so... keeping fingers crossed, praying and wishing you luck girl... take care of you ok. :) thx-Beth

Hey Beth,
Well after my first episode back in 2002 I was in remission for 5 years and done good without any problems or anything until July 2007 and I relapsed then. I have blood work done everytime I go to the drs office to see him. He has a CBC, CMP, and LDH done. I went today and my platelet count was 315,000 which is good. Im to let him know of any changes in anything that might be a relapse since he isn't going to be doing the ADAMTS13 blood work now. Hope everything goes well for ya girl. Take care. =)
Michelle

Hello,I too am a TTP survivor, I am 50year old female with a 22year old son with Asperger's Syndrome and a 14year son. My episode was April 9th, 2009 - May 1st, 2009. And a relapse May 6th, 2009 - May 12th,2009. I was taken to the ER because of confusion and hallucination. Soon after I went into a coma for 7 days during which time I had a seizure & a mini stroke & also kidney failure. My initial treatment was 6 treatments of rituxin & plasmapheresis 1st twice a day, then once a day then every other day til my platelets were in the normal range. I am now in remission. My blood is tested every 2 week & I'm seeing a hematologist every 6 weeks. I am on no medication only ferrous sulfate 2wice a day. I seem to be healthy now with no medical problems. I am a little confused at times & some memory loss & other cognition problems. The doctors have no answers as to why or if my condition will return or future management. I am concerned for the future and seeking employment. Every around me is still nervous & advising me to take it slow & easy. While I appreciate how blessed I am now because the Dr's had advised my family that if I did come out of the coma I would probably be in a nursing home needing rehabilitation. I feel pressed to get back to regular life. I was lucky enough for Medicaid to pay my medical expenses. I had to move in with my Mother until I can find employment and get back on my feet. I have been searching for answers but have only found that this is a rare disease. I am anxious about what the future holds. Does anyone have any experiences for things to look out for. I welcome all you have to offer & wish you all good health. Thank you for someplace to come to share this time in my life I feel more comfortable about this mystery. Healthy life & happy living to us all. "

As to any experiences that I've had with this disease is petechiae (red blood spots under the skin), headaches, nausea & vomiting, diarrhea, confused, didn't know anything, easy to bruise, extremely exhausted and tired and all of this was when I was first diagnosed with it in 2002. When I've relapsed all the other times: 2007 - had petechiae and confusion. 2008 - no signs but had drs appts and every time he done a direct admit to the hospital except for 2/11/08 when I was going to receive my first treatment of Rituxan at the hospital and they done blood work and come to find out my platelets were 7,000 and 8,000 an hour later. I've been doing good so far, but knock on wood that I don't relapse again. I've had a total 5 treatments of Rituxan and numerous treatments of plasmapheresis. But back in 2002 my platelets were down in the 900s and I was in ICU but in the hospital for total of 21 days. I've had 5 lines put in at different times. At one time I had a PICC line and a Permacath insert and they both was pulled out in April 2008 when I ended up getting the flu, since I was on Prednisone for 6 months straight. I hope and pray that I don't relapse again but if it's meant to be then I will. Good luck to you.

Thank you so much for sharing your experience. I've been in remissions since May 12th, 2009. Not knowing what to expect is an unnerving feeling. Since the Dr keeps giving me the I don't know let wait & see treatment, it's comforting to get some insight from someone who's been there. I see the Dr tomorrow. The past week I've been having some symptoms headaches, lightheaded , night sweats & chest pain. I was sure if it was the TTP or just regular stuff that I'm going through since I also believe I'm going through the change. I know time will be my teacher but it's still helpful to have some clues. I like this it is revealing. Taking it 1 day at a time. That's all for now. Later

Hello, I am 32 and have had TTP since 2001. Actually, it wasn't until last year that I realized how serious this was because I had been in remission for 7 years until last June. I am now dealing with a bout with TTP and praying this is my final time. I know God won't give me too much to handle. I just pray that there will be some cure to this God awful disease.

I know how you feel about having a cure. Have you tried Rituximab (Rituxan)? I worry everyday that Im going to relapse and hope that I don't. Like yesterday I had a CBC done and my platelets were normal at 278,000 and Im worried that Im going to relapse since I had a CBC done on 7/24 and they were 284,000. Hope you keep high platelets.

I also live in Ohio. The akron/Canton area. We moved here this past Nov. I am originally from South Jersey. I have been in remission since April 2008. Other then living with some residuals I feel pretty good. My main concern is the anxiousness I feel at times. I don't know if I try and be brave but my subconscious remembers how I almost died March 3, 2008. I quess I am always looking for symptoms of relapsing....I try and be brave but TTP is scary. We are all survivors and the bravest people on earth.
High Platelets to all
Mary Jo