Update on me

Just thought i'd give u all an update, i haven't done that for a while. My counts are still low and i'm still off the pred and although my counts are not extremelly low (anywhere from 11-25 in the last few weeks), I am showing signs of bleeding with lots of petechia and bruises again. So my doctor has organised a new treatment and I have just started my first round of rituxan yesterday (Friday in Oz). I haven't too many side effects so far apart from feeling a little stuffed up and flusish while the infusion was going through and also feeling a little flusish overnight and some sore muscles. Now i feel like you would just as your getting over the flu and feeling really tired, but if thats all the side effects i get, i can live with that. How long does it normally take for the rituxan to kick in? That is something i forgot to ask them yesterday.

Hi Angel. It usually takes 4 to 12 weeks after the first infusion. I'm glad everything went well!

Seems like the average or maybe the median time for a response from people here is on the day of your fourth infusion. No juggling knives meanwhile.
Erica

Hi Lauren,
Good to get the update on you. Sorry you are having bleeding symptoms - hope Rituxan works well for you and quickly. How many infusions does the doctor plan for you? Some people seem improvement fairly quickly it seems, but don't get discouraged if you don't because for my friend it took until after her 8th infusion. [you know the drill - nothing is for sure with this ITP ]

Hope you are feeling better - may your next infusions be a breeze and bring you
good counts for a long time to come!!

I hope your feeling even better today! Did they have to stop the treatment because you were feeling poor? Just curious! Praying this treatment works for you. I think it does, at least the first round, for most. As mentioned, everyone is different though!

Hi Angel, just wanted to say I hope all this works for you. I will be watching with interest as I am from Oz as well, still pretty new to all this and I am trying to follow others treatments so when and if I need more treatment I have an idea on how different treatments work.
Anyway best of luck and I hope the flu like feelings go for you soon.

Thanks for all the replies.

It all got approved quite quickly. I went to my normal 8 weekly checkup with the Hemo and i showed him all the brusies etc. We taked about the rituxan as a treatment option and he said he would look into it and see if he could get approval from the head hemo doctor cause it is not on the pharmacutical benifit scheme and the hospital would have to pay for it themselves. Two days later i got a call from him saying it had been approved and we were gonna start it the next week. He seems to be quite hopeful it will work, so fingers crossed.

Thanks Sandi, thats good to know, so i won't stress out if nothing changes much for a few weeks.

Melinda: I am having 4 infusions over a four week period. I'm not sure whats going on with the bleeding symptoms cause at the counts i normally have lateley anyway i haven't been getting many. I think thats why he wants to try this because he is more pro-active on treating symptoms, not the numbers.

Gretchen: They checked my temp and it was normal, so they left it as it was and told me to let them know if i felt worse, but it passed quickly. I am still feeling pretty good, still slightly stuffed up, but if thats the worse side effects i get, then i'm fine with it.

Thanks Milly, i have my fingers crossed it works. What part of Oz are you from. I'm from Newcastle in NSW.

Angel I am from Bathurst central west NSW, I have been wondering what treatments are available in Australia as it seems to be different for each country.

Bathurst is a beautiful part of the country.

Well so far, i have tried prednisone, i tried cycolsporin years ago, this time last year i tried nplate which created some complications for me and i had to stop. I had some IVIG last december and i have had a couple of platelet transfusions and now the rituxan. The Nplate and the Rituxan are not on the PBS, so for the Nplate, my doctor had to apply through the drug company for them to pay for it (which they did) and for the Rituxan, he had to get authority from the head of the unit to use it.

Some of these drugs have worked for me at some points. The prednisone, cyclosporin both worked, but after a while of being on it, it stopped being as effective and had some bad side effects as well. They are not the type of drugs one wants and should be on long term.

The Nplate worked to stsrt with, but then instead of increasing my platelet production, it started increasing my red and white cell count productions and my blood work was also showing up with these pre-lekeumia cells called blasts. Everything went back to normal once i stopped it. Don't get too concerned with this if he mentions this drug. So far, i haven't heard of anyone on this forum except me who it has had this effect on.

The IvIg did work, but he said it was only ever gonna be a one off treatment as i had just had my appendix taken out and he wanted me to have the extra platlets cause your body uses up platelets faster when your unwell.

Thanks for the information Angel, I don't need treatment right now but I am the sort of person that likes to have a plan stuck away in the back of my mind. I find if I do this I don't stress so much about things and mt doctor always ask me what I think before we decide on what to do.
I really appreciate the help and if you don,t mind I may ask you for advice from time to time, not too often though. The hardest part of this is that ITP is a lonely condition, not too many people have it or have even heard of it so it is hard to find someone to get advice from.

Your Welcome Milly, No, i don't mind you asking at all, thats what this forum is for, to provide support and advice to each other.

I hope it works well for you, Lauren. It has for me.

Did you have to take Decadron 24 hours before your treatment? I had to take one 4x's the day before each of my treatments.

No, i didn't take anything 24 hours before, but i think they may have given me some kind of steriod type tablet along with the panadol tablets they gave me about an hour before they started the treatment.

Hmmm. Ok. I wonder what the point was for me to take it. The 2 am dose was the killer!

Thanks, Lauren

Cindy - you're the only one I've ever heard of that did Decadron prior to Rituxan like that. Had you ever had it before? It could be the reason for your fast platelet rise.

I think there are studies that doing them simultaneously gives a better response.

Sandi, no I had never taken it before. I've never seen anyone else mention it, so that's why I was asking. I wonder why I had to take it.

So is it possible that it's the Dex that brought my counts up, and not necessarily the Rituxan? I go on the 27th for my next blood test.

The Dex may have caused the fast rise until Rituxan took over. I don't know that for sure, just throwing it out there. Dex can cause a very fast response.

I actually think it's a good idea to do it that way. It will act as a pre-med to Rituxan and can also cause a rise in counts. Very nice combo.

Hi everyone,
my husband had to take Decadron 20mg each night before his 4 rituxan infusion in the morning.
His platelets went up to 111 the first week after his first infusion (12/28/10), than 181 the second. He has been in normal range since.
He was on decadron pulses couple of time before rituxan. His platelets would rise quickly within 8 -10 days, than crash very quickly.
Hope this info helps.

Cindy, good luck with your blood test on the 27th. My husband has another CBC on the 25th. I always get so nervous........more than him......I think:}

Angel, good luck to you, I really hope rituxan will work for you.

Sandy, I just wanted to say thank you so much for all your wisdom and great information you give everyone. What a blessing you are and everyone on here sharing their stories and feelings. It has helped me so much to understand ITP better and how to support my husband the best I can.

Thanks, Rita. You too. Let us know how you make out.

Thank Rita, I am feeling very positive about it

Thank you, Rita. I'm glad to know something I say helps!

I had my second infusion on friday and i dunno if this has happened to anyone, but i got heart palpitations during my infusion. They seemed suprised at that one, but they stopped it and gave me fluids through the iv for half an hour and then re-started it when i was feeling better. Has this happened to anyone else?

After the second infusion, i have also been getting some insomnia as well. I haven't slept much since friday night and it is now tuesday morning here in Oz, has anyone had this as a side effect, i didn't have this before i started the infusions. I had it for about two days after the first one and now for 4 nights so far after the second one, does this mean i should be getting them to slow the third infusion down again?

Hello Angel,
sorry to hear you had heart palpitations, I am sure that can be scary. Marty (my husband) did not have heart palpitations, but he did have a reaction(itchy) when he got the infusion too
fast. He also had insomnia for couple of nights after his infusions, I think it was do to the decadron he also got with the rituxan. His Hamatologist told him to take a sleeping pill each night of treatment, which did help him.
Hope this helps. I sure hope and pray Rituxan will work for you. It is such a relieve to have stable platelets.

Marty had a CBC on the 25th, his platelets are stable 285..thanks God........I cried (feeling relieved) when we got the result...I had a "flash back" getting the 3:30 am call and how scared we felt.

Cindy,
I am thinking about you, I know you had a CBC on the 27th. Hoping you are having happy stable platelets, lot's of them.

Thanks for all that info, it might have been because of the pre-meds they gave me. The last two nights, i have slept a lot better. I really hope it works for me too, wow 285, thats fantastic, i'd love to see my counts go that high, the hematologist said he would be happy with them consistantly around 30 or so which i would be too, but would be a nice suprise to hear the count that high.

Only other thing that sucks is i seem to be losing a lot more hair then i normally do and it seems to be dry as well, is this normally a side effect of this drug?