Thrombocytopenic Purpura Support Group

I was diagnosed with TTP in July 1997. Was in ICU and actually almost died because I had the blood work done in May 1997 and the Dr I saw did not read my results until July - Needless to saw the good Lord saw fit to keep me here. It reoccurred in Dec 2000 and Dr's decided to do a splenectomy (supposed to help with TTP). Had that done and had no trouble until March 2008. Every time I've had TTP, the symptoms have been different. The first time it was bruising and red dots that I did not pay attention to on arms and legs. The second time it was brusing on my back and this time it was a black puffy blood spot in my mouth, so I decided to go to Dr and sure enough they were 15,000 and with hours they had dropped to 7,000. Was in hospital from March 12th until April 15th. I have had a ton of pheresis and rituxin and today was the first time my platlets were within normal range "for me" (340). I also became anemic and am taking Iron pills. I go to Dr twice a week to get checked. My last pheresis was July 22nd. I'm a nervous wreck because you never know when this will come back. I pray it doesn't EVER come back. I will pray for each and every one of you. Would appreciate any comments.

Post edited by: Stamatia, at: 07/29/2008 12:12

Hi,

Thank god you're ok. I'll pray for you that it Never comes back. I was diagnosed in Oct 08. like you i ignored the bruises on my legs. the day i went to the hospital, i wasn't feeling right but couldn't figure out why. i was in the hospital til the end of november. can TTP be prevented do u know?

michelle

hello, how are you feeling? I was diagnosed march 06 and have had four relapse with this awfull disorder. As far as I no there is no cause, or cure,or warning. I think there are diffrent sighns and symptoms for diffrent peolpe.I get really weak and extremly nauseated,again it has been diffrent each time I got sick.My platelets were 8000 when I was last admitted last month 8-8-08. They are now around 180,000!Wishing you high platelets!!

amc i am a new member. my husband has ttpwith missing adamts13 protien. diagnosed may 4 08 we are still at tring to keep it under control. you have no idea how glad i am to find this group. i know now we are not alone and how scared you all must be of the relapses. my husband has had 2 so far. iam disabled too but have been wit him every step of the way.i feel for what he is going thru i can tolerate what he is havig to do. i hurt for him as we have been married 40 yrs. this disease is something we have never heard of but i,m educating us on it as much as i can. the good lord has brought us tis far so am hopeful that we can have some respite from this soon. he is down to 2 pheresus treatments a weak plus retuxin and now cytoxin on another day. his last platelet count was hurrah 309. wish more people would find out about thi group and join as i think theres alot more that have this than anyone knows. sorry this is so long but i could write lots more. when he first had this his platelets were 3000. so even with relapses 12000 and 15000 we've come a long way. had the splenectomy andis on high pred was on life support for 7 days. we are fighters as we all are and with Gods help we will beat this terrible thing. so keep fighting and God bless you all and may your platelets stay in a good range. would love to hear comments from anyone with this. amc

this is alice28rmc again, Yesterday and today were good days but scary as dr decided to take my husband off pheresus he had his last one yesterday and his last retuxin today and will be monitored m w f this next week to see how much his platelets drop. they dropped 50 pts from yesterday to today. this is how it was before but they didn't keep track often enough. his count has dropped 150,000 in less than 24 hrs. so you see why i'm apprehensive but will keep the faith and pray they stay at a safe level. his last relapse caused a lot of short and some long term memory loss. a 6 week hospital stay and a month and half of pheresus and retuxin. now its just wait and see. hope more people find this web site and i tell every one i come in contact with to check it out for any illness. safe platlet counts to everyone with ttp. amc

I have a question Did you take the drug Actigal generic is Ursidol before coming down with TTP? My husband did and I feel it may have brought about the start of his ttp.alice28rmc

Hi everyone its so funny 2 hear of everyone's symptoms because i've had them also its really hard going from normal healthy to routine blood work & dr visits. what kind of side effects has anyone had from the splenectomy? just curious because i had mine out in June 08 & i really don't know 2 much about the effects its gonna have. God Bless Everyone & keep faith

Hi,

Don't know if any of the problems my husband had after the spleen was removed had anything to do with that procedure or not. I know my husbands spleen was enlarged and diseased with some sort of slimy film over it. Drs. had never seen that before. Dr. said that he can not be around anyone who is sick with anything contagious including colds or flu as he doesn't have his spleen and what it does to protect people from getting sick. He's been so sick and weak for so long it could really be detrimental to him. So we are very careful. We have to be careful with any new medicine or even vitamins etc that he might take. It will have to go thru his hemo Dr. first. They could not flush his neck catheters with heprin or use an antibiotic vencomyacin(sp) because it caused his platelets to crash. Withnot knowing what caused his ttp we have to be careful of everything. When and if he gets stronger we may not have to worry so much about colds etc. I don't know. When I first found this group there were 9 in the group and it is steadily climbing and I KNOW there are probably a lot more that we don't know about. It is becoming more prominent and I think often misdiagnosed and probably people are dying from it before it is found out. I have thought of contacting the TV stations here to see if they can get the word out about ttp to maybe help others be diagnosed sooner. Bless you and keep those platelets up. alice28rmc