I'm taking the maximum dose of 50mg according to my doctor. I feel good at 30,000 too but they tend to be trending downward so we'll see. I go back on March 18th to decide for sure on the splenectomy. I am grateful the Promacta gave me a few months of no side effects and safe counts. Thanks for all the well wishes folks. Love, light , and high platelets to you all!!!

Oh I'm feeling some pain on my right hand and getting headaches. Don't know if it's the taper or something else is up.

Farida,

I started prednisone first week of January at 60 mg and my counts dropped so I went up to 100 mg for 3 weeks then tapered to 80 mg for 4 weeks then started 70 mg last Saturday. My counts went up to 451 after I tapered to 70 mg so we decided to go down to 60 starting yesterday. :laugh: I am hoping and praying they stay up even though I tapered again.

Am I tapering too fast?


Pawee

UPDATE:

I went to my FP to get CBC done in the meantime while I waited to see the hematologist. My family doctor called me this morning with the CBC results - my count is at 24. He called immediately and got me in to see the hematologist on Monday! I'm a little anxious now that my count has decrease again, but I feel relieved that I will get to see someone and discuss where to go from here.

I will update you all on how my appointment went on Monday!

Normal is always good. I'm glad to hear that your platelets in a good range and I hope that they don't bottom out too low.

I'm also sorry to hear about Trevor's hip and that his platelet's are stubbornly stuck in the cellar.

Lily

Great counts. I hope they stay up.

lily

30's not a bad count. And you never know, they might level off or go back up. Anyhow, best wished for lots of platelets.

Lily

Best wishes. Do keep us updated. There are a lot of us who would like to give this a shot.

Lily

I was searching lack of platelets in 1999 thats how i found it.
Love this place. :kiss:

I think a splenectomy at this point is totally reasonable. Actually, it's reasonable at any point, although some people seem to be rushed into it by their doctors. You certainly haven't rushed into it and have given it a lot of thought and tried everything else. I hope that you're in that lucky 70% for whom it's successful. Really, when you think of it like that, the odds aren't so bad.

Good luck,

Lily

I hope this works out as well for you as it has for me. I had a splenectomy just under 3 years ago, and have had excellent counts since. I know it is a major decision, and has its risks, but all the other treatments have their risks, too.

I did it because I was sick (literally) of the treatments, and decided taking a big roll of the dice on something that had about 65% chance of working for a long time was worth the try. With modern vaccines (HIB, pneumococcus and meningococcus), the serious infection risks are quite low. I have had no increase in any sort of disease since having my spleen out (I don't get colds, etc.).

Good luck, Michelle! I hope you are one of the success stories. Like the others have said, keep us posted.

Welcome to Day's of Our Platelets, Episode 11, the saga continues!

Today's count is down by another 150 overnight to 158, at this rate it will be less then 10 by tomorrow !

What a week and a bit, this has been!!

I would like it noted that for the past 2 days, my count has fallen in the normal range. I know this is only temporary, but it is nice to be normal, if even for a short time! :silly:

My Haematologist has stopped the asprin, and I am to re-start the Eltrombopag/Promacta. It normally takes about 2 weeks to kick in, so it is likely to be a couple of weeks of very low counts, as a balance is hopefully achieved.

Cathy, We miss you on the chat. Maybe there is another time in the week that would suit you and everybody else, so that you can join in. What time/day would suit you? We can talk about it next week. So they attempted to operate on Trev's hip, and could not get the desired count . How disapointing! Is he still on the Eltrombopag? P.S It is nearly Easter again, have you finished last year's egg yet??

Vanessa

I too would like to hear some real-life stories about ITP pregnancies.

What exactly does monitored mean? How often do you have to have blood tests? Do you have to have any treatment at all if the platelets drop below a certain level? if so, which treatment is safest for mother and baby? How sucessful was the treatment? Was there any complications during labour? How did the doctors deal with it? How long did it take the mother to recover from giving birth?

I mean, I would like some real answers. I'm sure we've all read all the publications about ITP and Pregnancy but I would like to know what to expect rather than be told that the majority of women deliver health babies, bla bla bla, bla bla bla... What about the minority of women? how do they deal with it? Nobody wants to talk about that for some reason. It sounds like it's up to the doctors and we shouldn't worry our pretty heads...

:dry: Sorry if I sound stressed out. I've been going round and round trying to find proper info and always end up reading the same robotic vague bits of so-called information.

I am in a very similar situation as Ilauretano and would really like to hear about different (real life!) pregnancy experiences.

Thanks

I found it just searching ITP through google and i thought it would be a good idea to check it out and register for the forum so i could talk to other people who have it.

Good to see they are dopping now, hopefully they won't drop too much further.

Wow, thats an awsome platelet count, i find my platelets do drop a lot when i taper the pred, hopefully yours won't drop too much

congratulation , enjoy the good count,when did you strated the predinsone and for how many grame , is this first time yousing the predinsone?

wow, vanessa...it seems you are having more than a typical itp experience...trev had the intragam for his op..and got absolutely no response at all..so no go...cant mak the chat anymore unfortunately , as footy training for the under 18,s goes a lot later... :S anyway..hope it all evens out for u soon.. cathy

Oh, wouldn't that be sweet!?!

Fast rises--esp. to counts over 100K--usually portend very good things with Rituxan. A fast rise would be one that happens during the four weeks of infusion....

How long was her infusion time? How soon do you get a count? Caitlin always had hers before she even left the infusion room. I am soooo ready to go :woohoo: for you! Ann, Caitlin's (22) Mom

That's weird...it doesn't list dizziness as a side effect so I assumed it was just from her laying down so much. Her fever is finally under 100 now and staying around 99.5 and she feels better. Even though she had side effects to the Rituximab, they really weren't that bad. I really was expecting worse and she did much worse with IVIG. Also, the petechaie that she had all over her back and some of the bruising is already going away. Makes me wonder if the Rituxan is already starting to work.

I had IVIG when I was first diagnosed as well as Pred. My numbers slowly went up from 8 to 209 in four days. But that only lasted 4 weeks. Haven't had it since June 2009. I had a really bad headache a couple of days after, but it was bearable.

Yes, keep us posted. I would like to hear your experiences with Promacta. My Hema has talked about me starting on this. Good Luck!!

Best of luck to you. I loved the zero side effects of this treatment and it worked great short term. Looks like I'm heading to splenectomy now though. I really hope it works long term for you....it does for some and I hope your one of them. Keep us posted.

Bummed. Platelets dropped some more to 30,000. Got my shots / vaccines in case I need to get my splenectomy in the near future. It was good while it lasted. First treatment that had no side effects. i'm grateful for that.

Bummed. Platelets dropped some more to 30,000. Got my shots / vaccines in case I need to get my splenectomy in the near future. It was good while it lasted. First treatment that had no side effects. i'm grateful for that.