Hi Marika, :) As thrilled as we are that the homeopathy is having a positive effect, we're also being very cautious. This was only one blood test. Even our...
Dear Mike, Yes, it's true. My cath clots up so much at times that I HAVE to remove the end caps to aspirate it. I know it's dangerous--I got air in one line...
Hi BB and everyone Just thought I would let you all know - that there is a diary of someone who has tried Rituxan on the TTP network - www.ttpnetwork.org.uk Go...
Mike The 1925 recordings of TTP would be so interesting to read - Ive read small amounts about the case study of the gir who had spent the day on the beach and...
Jeannie, Thanks for passing this along. As you know I had Rituxin last Oct. 4 treatments then remission ... I am a big fan of it b/c I was crashing every 2...
Hi Luca - Welcome back. Sorry to hear about your mother's continuing trouble. I can sure understand her issue with the steroids. They make me the same way. So,...
Mary if you need to keep A cath. ask your Dr. if you need to get it replaced about A deep tunnle cath,and useing heprin and TPA.I had my cath. over 2 yrs. and...
When I find it again I will post it as soon as I can. I found it through the yahoo search engine by typing in TTP. It is not to easy to find again still fairly...
Dear Mike, I've been using saline & heparin in all my caths. Since I've been in remission a bit over 3 months now, one of my TTP doctors told me to go to my...
Dear Taylor, Hi! I woke up very early today & for some reason, you popped into my head. Then I remembered you were in the hospital last time we talked. I...
Dear Ellen, Just thought I'd check in with my "TTP twin" so to speak. When you mentioned being a teacher, I was kind of surprised, because there are several...
Has anyone experienced these it seems lately they are getting worse for me? How are you dealing with them? I have asked my doctor and they just kind of said...
Dear Amy, Yes, I experienced mood swings, dizziness, swelling, feelings of unreality, foggy vision, severe skin dryness...the list goes on. All of it from...
I have been on the prednisone since late August and just plain tired. They have started to reduce but it seems like the side effects are getting worse than...
Thanks Mike I understand :-) good luck with the search - be good to hear from you in the future :-) Until then High plates n Take care Jeannie :-) The Trail is...
Ask your Dr about Deltasone, it is about the same as Prednisone but with me when I was given it for asthma attacks, didn't have as bad of side effects. But, I...
Hi, I'm also a prednisone user. I also had rituxin / chemo treatments. I also had allergic reactions to the plasma and had 41 pheresis exchanges. I was...
Thanks I will ask. Amy ... but with me when I was given it for asthma attacks, didn't have as bad of side effects. But, I don't know if that would have any ...
Hi Mari, Just wanted to say hello and welcome. You found a great group of people here. Lots of support. I was diagnosed with TTP on June 20, 04 and was...
Mary the only thing that botheredme was sleeping and rolling over on my side pulling on port tubes.The swelling did'nt even bother me. I guess the swelling...
Welcome Mari, Glad you are at home and you found a great group of people for support and understanding. Hugs, Amy ... 41 ... now ... up ... am ... (this ... ...
Dear Mari, I know that he he he benadryl feeling SO well. When they were exchanging 4 litres of my plasma a day and it took 3 and 1/2 hours, I looked forward ...
I want to thank everyone in this group for sharing their experience with me. I feel so much closer to my mom when I read your messages. I pray that everyone...
It's so nice to know that the frustrations and experiences from this disease are shared by others (although, unfortunate for us all!)...I am so glad that I...
I was reading a little about what you were saying about benadryl. I just thought I would share. When I was having my plasma exchanges they would give me...
HI TO SANDY AND ALL THE NEW PEOPLE. I JUST RECENTLY JOINED THE GROUP MYSELF ABOUT 2 WEEKS AGO. I WANTED TO GIVE EVERYONE AN UPDATE AND ALSO A FEW COMMENTS ON...
Tina, Glad to hear your doing better! ALso glad you have the cath in neck instead of your groin! Been thinking of you, crossing my fingers you will enjoy the...
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