Sooooo sick of itp

im 26 been diagnosed for 8 years now ive had a splenectomy steroids, rituxin, promacta was on nplate had a stroke lost my left arm in it but after alot pf phyocal therapy i am almost recovered besides the feeling but at least i can move it. After my atroke my platelets
plumeted and the doctor tried nplate again, its not working at all now the only thing that works right now is ivig but only for exactly 1 week, 7 days and right bqck down it cant be good to be getting these transfusions every week.....I have now decided to listen to a book i bought conquering low platelets licorice root, pomegrante, votamin c and eating healthy and exercismg last wek my platelets were 314 weird that was 9 days after the ivig ans 2 weeks after my last nplate shot unfortunately i woke up this mornin w those stupid red dots i hatttte them any encouraging words to get through thiq again im just ao over it i want some new treatments to be approved for everyone that has itp ecspecially for the stubborn cases like myself

That sounds really tough Kelirae, I'm sorry to hear you have to go through it at such a young age. Not fun! But great that you are recovering from the stroke. Being young will help you heal faster. Good luck! Hang in there.
My question is how do you do with low counts? do you have bleeding? Low counts aren't safe for everyone but I prefer to stay steady at a lower number than have high counts then the crash.

Have you tried Promacta? Its similar to NPlate but also different. From what I've heard it sometimes works for people who can't do NPlate.
I'm taking a break from Promacta and now am living with low counts and a tiny bit of prednisone 5mg. I've been doing some natural things too. Hope you find something that works! I always look around at the hemo's office at all the people who have cancer and it makes me grateful that I just have ITP.

Dang, sorry to hear all the crap you been through!! Have you considered Rituxan again? My first treatment lasted 16 months, second one is over 2 years now. My counts seem to have leveled off at 170-200k.
Easier said than done but try to stay positive!!! ITP can be Very frustrating!!!

thanks for the responses at 5k i usually start gettin petechiae and when i get to 0 the mouth blisters come w the nose bleeds and horrible periods i tried promacta didnt work for me and steroids stopped working years ago i would love to try rituxin again but im so scared of that after my reaction the one time but that was 6 years ago

I would try Rituxan again. They can treat a reaction if it happens again. My first round went fine but I reacted to the first treatment on the second round of Rituxan. Make sure insurance covers another treatment if you decide to. I believe Sandi posted something about assistance with Rituxan treatments.

Depends on what the reaction is. Some are severe and cannot be stopped...anaphylactic shock and serum sickness usually cannot be prevented.

Sorry nothing is working, Keli. You sure do have a stubborn case!

How bad was your reaction to Rituxan?

Me? I had serum sickness. Twice. Once because I was misdiagnosed by an ER doc when I had it the first time, so the next year when counts dropped I had Rituxan again....same reaction. Serum sickness can't be prevented and subsequent exposures to the offending drug can cause death. I was much worse the second time. Very painful experience.

I was referring to Keli, but your input is fine Sandi. I was curious as to how Keli reacted. Sandi,can you provide further details on the symptoms of serum sickness?

It usually hits between 14 to 21 days after the first infusion (delayed response). It hit like a ton of bricks in the middle of the night. I woke up and literally couldn't move. It causes swollen, painful joints, headache, fever, swollen glands, hives, etc. I couldn't turn over in bed or hold a coffee cup. Horrible experience.

Hope I never experience that!! Especially the coffee issue!!!

Chances are, if you haven't had it to this point, you never will.

Sandi, if one does not experience serum sickness the first time, are the chances of getting it the second round less? Just wondering if Keli did not have serum sickness the first time would she have to worry about it the second round.

I have read reports of people getting serum sickness only after the second infusion of rituximab. What the chances of getting it are I have no idea.

We need to be clear on this. Serum sickness usually occurs after the second or third infusion in the first series or round. It's a reaction to the mouse gene. Since people can develop allergies at any time, I would imagine a person could have the reaction during subsequent rounds, but it would be rare.

Some people go into anaphylactic shock during Rituxan infusions. They should also avoid future treatments of Rituxan if it is severe enough. It's really not worth it to keep trying Rituxan. The risk of dying from Rituxan at that point is much greater than the risk of dying from low counts.

I had a serious allergic reaction but not serum sickness. I had a successful round of rituxan, four infusions. Then 9 months later I had two infusions and during the second one I had a reaction (severe chills, never had that before) and after I got severe head to toe hives (also new).

The thing that was important here is that it was an increase in reaction all of a sudden, so it is quite likely that my allergic reaction could be even more severe if I have it again - even anaphylaxis. Dr. Liebman at conference said I should not ever have Rituxan again, not even the newer version that is de-moused. I wouldn't ever have it again - the idea of anaphylactic shock is too terrifying and more risk than I'm willing to take.
Luckily I've been in remission for three years now from those last two infusions. I just had a count yesterday, don't have it back yet.
Erica

I had treatments of Rituxan before while in the hosptial and out of the hosptial. While in the hosptial I became very sick off of it, but as an outpatient it didn't bother me at all. When I asked my nurse about getting bad side effects and none at all. She stated that it could be the manufactor of the Rituxan that could make the difference.

in the hospital again last week for a tia almpst another stroke from too much ivig platelets went to 500k my first stroke was in october while i was on nplate i no longer blame nplate only the fact my body cant take that many platelets got put on asprin and ended up in the hospital monday night w 2k happy to report i tried the trial ag of rituxan yesterday and a full bag today and no reaction fingers crossed i wanna life back

Fingers crossed for you!!

SORRY TO HEAR ABOUT YOUR STROKE. I TOO HAD A STROKE ACOUPLE OF WEEKS AGO. MY PLATELETS DOVE AND THE DOC PUT ME ON HIGH DOSE OF DEXAMETHINE AND WAS NOT FEELING TO GOOD FOR A COUPLE OF DAY AND ON MY 4TH DAY I STROKE OUT. I WAS BLAMING ON THE STRIODS BUT THEY FOUND A WHOLE IN MY HEART SO KNOW I HAVE TO THAT WHOLE REPAIR BECAUSE IT CAN CAUSE ANOTHER STROKE.I CAN FEEL FOR YOU THE UP AND DOWN OF THE PLATELETS AND JUST FEELING CRAPPY AND THE MED'S OMG HOW SICK I AM ALSO. BUT I HAVE TO LOOK AT IT AS IT COULD BE WORST. I STILL ALIVE AND ENJOYING MY FAMILY AND FREINDS AND WATCHING GRANDCHILDREN GROW UP AND GET ON MY NERVES.sO wE ARE LUCKY IN ALOT OF WAYS. haNG iN THEERE. aND THINK GOOD THOUGHTS.:woohoo: :woohoo:

......

Sissykidd,
Stand your ground and keep your Spleen!! You do not need to be more suceptible to illness than you already are.