I find myself a bit discouraged today after Devyns Dr appt. Altought his counts were a good number 66,000, this was the first time that his specialist labbled him as cronic ITP. Don't get me wrong i knew that after coming out of remmission for over a year that he probably was but hearing it from his Dr just made it set in!!

I'm upset because she made it sound like He would never get better and that his symptoms would only get worse as he got older. Talk about giving you no hope!! We have been very lucky so far because Devyn's symptoms have never been as bad as some of the kids on here and so far we have had to treat only once. Don't get me wrong she is a very good Dr and i have agreed with the way she has wanted to deal with Devyns ITP. I'm just hoping that she is wrong and that one day he will be ITP free again!!

Thanks for listening everyone......just needed to vent a bit

Deanna

Danica starts the Decadron on Monday -- IV for four days

Michelle

I've just noticed this in someone elses thread - when you sign in now there is a remember me box like there was on the old site.

Ali

Hi Lauren,

Sorry to hear that your count has dropped, but glad to hear that you will be starting Nplate tomorrow. I hope you will respond quickly.

I have no experience of Nplate, but for me Eltrombopag takes at least a couple of weeks to kick in, about 8 weeks when I first started taking it.

All the best for tomorrow. Be strong!

Vanessa

How long does it take for the Nplate to start working?? As i mentioned in the previous post, my count today was 9, so i started the nplate today, but i am only on 2 and a half mg of pred, so i just want to know how long does it take for the nplate to kick in? Just so i have a rough idea of how long i need to be a bit more careful till they get back up to a resonable level?

Today's count was 20, maybe the eltrombopag is starting to kick in!? Another count tomorrow...

Jenny, Liam is right! Platelet Headaches focussing over eyes, aching bones and extreme tiredness are a sure sign for me that my platelets are dropping fast. Hang in there Liam!!

Vanessa

Hi, I have been on IGG for years now. None of the other treatments worked for me.
I will not try Rituxamab due to the fact that my splenectomy left me with a very weak immune system. Anyway, you look like you've tolerated the IG you had fairly well. It is important to not take the IG too fast. Only you can judge this for yourself. It took me years to find the right product and speed. The treatments should start at about 60 on the pump for the first 30 minutes and then gradually raised. My system cannot tolerate it at a high speed, no matter what the nurses say, due to side effects. Taking Immune Globulin at a fast rate is not rec. by any Pharmaceutical Company.
I was diagnosed in 1983 and have been with this group since 1998. I hope the Rituxan works for you and does not leave any long term effects. My advice to anyone on any treatment is to read, read, read and search out anything you are going to try. You won't regret it.
Hugs and Blessings,
Yvonne W.

tamar wrote:

Well, although I visit daily, I hardly ever post because I have to go back to the home page and log in to make that happen, and it rarely seems like what I have to say won't be said by someone else. Tonight, however, I went back to the home page to log in and put a few more posts in this thread to work towards being a senior, and I see there is a "remember me" box now--is that new?

I think that is new, and i ticked it and since then, i have been logged in i would think for more then 5 hours and i haven't had to log back in since, so maybe they have been listening to us and changed it so we can stay logged in like the old forum.

Wow, I just found the "more smilies" link. Love this one: :X :X :X :X :X

I'm not going to get 12 more posts in tonight, but at least I'll be partway there... :side:

So....I have not watched The Bachelor at all before last night, and even I could tell that the dippy guy made the wrong choice.

Who knows the punchline to that one??

So this guy walks into a bar with a duck on his head.... :silly:

Well, although I visit daily, I hardly ever post because I have to go back to the home page and log in to make that happen, and it rarely seems like what I have to say won't be said by someone else. Tonight, however, I went back to the home page to log in and put a few more posts in this thread to work towards being a senior, and I see there is a "remember me" box now--is that new?

Hi Sandi,

I can relate to that.....I am the same with txt messages, emails and PM's. I find it hard to get rid of the special ones

Hi, we just got home a little bit ago. Today's infusion was MUCH better than last week's infusion! She had a little bit of trouble breathing and her blood pressure dropped a little so they slowed down her infusion once. No fever today so that was a relief!! The next two weeks should go without any problems at all! Her count went up a little to 18. Not sure if that's anything to be excited about, but they kept saying...at least her count "doubled" so hopefully that continues so that she's in the safe range either next week or the week after.

I plan to email the dr to ask her if I can have a copy of the labs. Rheumatology said they would send me a copy home after two weeks but I haven't received it yet.

Hi Pauline,
Just wondering how Caitlin's infusion went today. Hope it was uneventful and she feels better fast.
Karen
mom to Jordan

Hey Tofer,

I was on steroids for the last three weeks.. (Dexamethason) and before that I was on it as well.. So for the last two months I haven't been able to dance.. My body just could not do it.. I danced untill 3 weeks ago when I had a break down.. Becouse I had a performance and I just could not give it my all.. I was standing on stage and my body just refuised to do what I wanted.. I did finish the performance and the people watching it probably didn't even notice anything but that was the last drop.. I just could'nt do it anymore.. So me and my coach decided it would be better for me to stop for a while untill I feel fit enough to start again.. And I already suffered from depression before I was diagnosed with ITP.. I lost my grandfather 2 weeks after the diagnose so it all has been a lot for me.. And my body.. At the moment I did start following the sports lessons at school again.. I'm not able to to follow the whole lessons since my body just refuses to keep up.. But it's a start..

Joya

PMs were nicer & easier. Since having to email I haven't heard from someone who used to PM me a lot.

If there was a way to delete a post I'd try to attach an image and file - but since there isn't I can't mess around to let you know how it goes.

I am glad to hear Caitlin is doing all right!

Why not just email or call the hematologist's office and let them know you would like a copy of all her labs and when would be a good time for you to come by and pick them up. No point in waiting until you see the hematologist to ask, especially when you aren't sure when you will see her again.

Hope all goes well for Caitlin today!

Thats good to hear that your doing fine with the Nplate. I am fairly certain i will be able to start it tomorrow. My platelets need to be under 30 and i am now down to 2 and a half mg of pred, and i have heaps of bruises, not huge ones, but unexplained ones and lots of petechiae especially in places on my body i know i only get them in when they are really low. I get headaches now anyway, only thing i would be concerned with is the insomnia, but i'll just have to see what happens.


Update: I just got my count back. It is low as i expected, they are back down to 9, so i am going in for the Nplate this arvo, instead of tomorrow, wish me luck everyone.

Hi, thanks for the reply, they did a FBC but I dont know the results. Allthe haem said was that my platelets are abnormal. I asked in what way, and he just said, we need to do more tests. I asked if it was connected to autoimmune and he said lets wait and see. Clear as mud really!!! I also have FBC and various other tests done at the rheumy clinic, they have never said anything about the levels. Thats the problem it seems its a "need to know" and we dont need to know!!! They did say that when theu do the test theu have a volunteer nurse who gives the same amount of blood, so they can compare mine to "normal" blood. They did take into account the meds I am on, they can put markers on them apparently, so it wont affect the results. Just so confused, thanks.

Hi Mariette, I also live in the UK, near Newcastle. Did they do a full blood count? Did the Heama tell you what the count was? They get a lot of the results about 10-15mins after the blood goes to the lab on the computer. The pred & Metheltrixate may be keeping your counts up not so sure about the Hydroxychloroquine, that sounds like thats got quinine in it. If your count looked not too bad on the computer the heama would not have been too concerned. GPs dont understand and see a lot of ITP so i think they panic.
Julia

Hi, I have just had an aggregation/nucleotide test performed at the haemotology dept. I have bruised really easily for years, lately its been even worse. My gp was concerned. I also have an auto immune disease RA, and lupus is also on tghe cards. I am already on pred for my RA along with methotrexate and hydroxychloroquine. I also take amtitriptyline at night to help me relax and sleep. My next appt isnt until 7 June, is this a usual amount of time? When I asked when I should come back for results I was told 3 months, it does seem a long time to wait. Is this the test that will tell if I have thrombocytopenia (spelling!) By the way I live in the UK, dont know if that makes any difference, thanks

My platelets were 90,000 yesterday, taking NPlate. I have had headaches. I, too, have insomnia, but I already had it. I take Lunesta every night, but still have a lot of trouble sleeping.
I had a splenectomy about 25 years ago. It brought platelets up to around 125,000 where they stayed for years. Gradually my numbers fell and through the years I have been on prednisone many times for months at a time. The last few times on prednisone, my count didn't go up but into the 50,000-60,000 range. Without pred. my count was in the 12,000-25,000 range.
So far I am doing fine with NPlate.

I'm looking for some guidelines on when low platelets can be ignored vs need to seek medical attention to measure counts. The situation is a bit unusual in that my 17 yr old daughter has what I call "recurrent acute ITP". Her counts are normal until she gets a virus or even a flu shot. Then they crash. Once the trigger has resolved, her counts rebound to normal. She's been admitted to the hospital three times and treated with IViG twice in the last 6 years. Our experience is that recovering from IViG is physically worse than waiting for the rebound.

When she gets petechia on her legs, her count is usually below 30K. When she's sick it often crashes to 8-20K before rebounding. Last fall she had a cold and the platelets fell to 18K. We always ran to the doctors for blood work whenever we saw petechia. Thankfully the doctors said wait till the next morning and measure, and she was rebounding to 33K the next day and normal within 5 days.

Our first watchful waiting with skipping the doctors was after her h1n1 flu shot. She had petechia, but she was so worn down from treatment for Lyme disease and we knew it was the flu shot causing it which should be a quick recovery, and no bleeding, so we skipped the doctors and all seemed well in a day or two.

Last week she had a cold. Sure enough on day 3 of cold, the petechia came out. But we were snowed in with fallen trees across the driveway and regional state of emergency due to 25 inches of snow. We opted to watch it. She also had one blood blister in her mouth. Her platelets rebounded because the petechiae disappeared within two days. (she also was exhausted on day 5 of the cold, like her body was going into overdrive making platelets, she couldn't function too well even though the cold was resolving).

She's never had nose bleeds. I read in another thread that a blood blister in mouth was a warning sign that it is more severe.

Are there symptoms that indicate we should not try to wait it out and she needs to closely follow counts? i.e. blood blisters in mouth? If it is a longer illness or more severe like the flu, I think the rebound might be too late to wait it out..

She's off to college next year so I'm getting paranoid about learning when she needs to monitor counts closely or when she can bubble wrap herself and wait it out.

Any advice?

Thanks