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  • cindyduncan
25 Feb 2010 08:54
Polycythemia was created by cindyduncan
any one have too high red count and the white
  • mendenmh
25 Feb 2010 07:54
Replied by mendenmh on topic IVIg Question
The first treatment I had when I was diagnosed was a combination of lots of prednisone and IVIG. I had much less than 10k counts at the time of diagnosis (probably around 1k, very low numbers are hard to get accurately). The IVIG bumped me up to 150k on the first day, 400k by week later, 200k the week after that, 50k two weeks later, and so forth. In other words, it worked really well, but not for long.

I only had a very mild, wheezy sort of reaction during the infusion, and when they slowed the rate, I was fine. I got a total of 140 grams of IVIG, in to 70 gram infusions, on consecutive nights.

Marcus
  • liam12
25 Feb 2010 06:20
Replied by liam12 on topic liam at 32k
Come to think of it Liam did have a little bit of a runny nose about two weeks ago,its the first time he has had a runny nose in maybe two years or so ,,thanks , jenny
  • alisonp
25 Feb 2010 06:15
Ok, time to put on the brakes now!
  • liam12
25 Feb 2010 06:14
Replied by liam12 on topic liam at 32k
Thanks Ali.like everyone i am a little frustrated, i hate feeling helpless,i suppose thats one of the worst parts of itp, as a parent you go through such a roller coaster of emotions.even my friends notice sometimes that i get really frustrated,thats why this site is great we are all experiencing similar emotions and up and downs.i dont mean to complain its just been a rough couple of weeks.on the bright side liam looks fantastic ,apart from lots of bruising on his legs and eating me out of house and home. At the moment his favourite saying is"BUT IM STILL HUNGRY!'' That amount of predi seems like alot,i hope you dont have to go down that path as well! all the best , jenny
  • snowgoose
25 Feb 2010 06:11
Down by almost another 230 overnight, to 308.

Vanessa ;)
  • Angel85
25 Feb 2010 06:09
Replied by Angel85 on topic liam at 32k
I was the same, I was on 40mg and mine went to 72, and then the next week on the same dose, they went back down to 18, so i know how you feel. It does get frustrating. It could be that his body is fighting off an infection because i noticed when my platelets dropped, i was going to the toliet more and it was stinging, so i think my body was fighting off a urine infection, once my body fought it off, my platelets started to go back up slowly, so it could just be his bodies way of telling you he is becoming unwell maybe??
  • CindyL
25 Feb 2010 05:24
Replied by CindyL on topic IVIg Question
Hi, G. If my counts drop below 20, the treatment I get is IVIG. I'm usually down and out for the next three days, but everyone is different. It didn't make me sick like this until after I had my spleen out. I can't get Rituxan (Rituximab) here.

Good luck with the IVIG.
  • alisonp
25 Feb 2010 05:04
Replied by alisonp on topic liam at 32k
Hi

You sound like you are having a rough patch!

Here's our experience. Dougie has had 2 x two weeks of prednisolone. The first time, his count peaked at 50 at the end of the 2 weeks, the second time it peaked at 32 after 8 days. Just like yours, our doctor also said that any response was good - don't know how I would have felt if Dougie had previously had much better responses though. The specialist we have seen more recently said that he gets better responses treating with a 3-4 day course, but at 4x the dose (i.e. 4 x number of kg of body weight). Fortunately Dougie hasn't needed to go down this route, because it sounds like a lot to me!

Hope you see some improvement soon

Ali :)
  • Angel85
25 Feb 2010 04:03
Replied by Angel85 on topic Mothers!
lol, Yeah it is normal, i am not a mother, but my mother still tells me to be drive carefully or be carefull whenever i leave the house. Not only that, i still have to text her every morning when i get to work to let her know i got there safety lol. and i am 25 in June this year lol
  • liam12
25 Feb 2010 00:59
liam at 32k was created by liam12
:unsure: hi everyone,we've had a buisy week with liam,his last blood nose was 2 hours long and had to spend a few hours in hospital. after being on predi for 6 days his count is only 35,his heamo tells me this is good{i know he is trying to make me feel better]
when liam first went onto predi it would boost his count up to around250+ now the highest its been is 40,he doesnt seem to be responding as well as he did.His heamo says as long as its going up a little its ok,has anyone else have this happen to them? if so what are the explanations given to them. thanks,jenny
  • farida
25 Feb 2010 00:09
Replied by farida on topic CHAT ROOM AVAILABLE
where can i find that
  • Sandi
24 Feb 2010 23:10
Replied by Sandi on topic Hypersensitivity reactions in lupus
I've only ever had Flonase. I got that from my GP and when I saw the ENT, he suggested the same thing. Apparently I have a deviated septum and enlarged turbinates. My nose never runs (I wish it would).

I saw a commercial a few weeks ago that described my problem exactly. Constant blockage due to inflammation. The ad was for Advil Cold & Sinus. I bought it, took it and noticed slight relief, but nothing major.

I'll check out your Nasalcrom.
  • eklein
24 Feb 2010 22:36
Replied by eklein on topic Hypersensitivity reactions in lupus
Sandi, have you tried Nasalcrom? It's not a steroid, it's a nasal spray, it was Rx when I used it, not sure about now. Anyway, it takes about a week to kick in but it let me live with cats for a decade and breathe. You have to use it every day a couple of times/day. nasalcrom.com/ I had zero side effects. Apparently there is/was also an eye version (opticrom?) for people who get itchy allergic eyes. Erica
  • gr81
24 Feb 2010 21:48
IVIg Question was created by gr81
Have any of you had the IVIg treatment? If so what were the side effects if any and did your platelet count improve and if so for how long?

Thinking about receiving IVIg also had Rituximab treatment.

Thanks.
  • Christine
24 Feb 2010 21:09
Replied by Christine on topic Mothers!
Yes it's normal - been there, done that!!!! :) :) :)
  • jpoisson13
24 Feb 2010 20:57
Replied by jpoisson13 on topic 21 month old with ITP
Sarah,
Where do you live? My friend is a doc here in MI, and she was saying that often if kids get some sort of serious illness, they can apply for state insurance and it will be retroactive...

C was diagnosed at 3.5 with a count of 11k...her hemo admitted her that day and she got IVIG. Part is what the doctors say, part of it is what you're comfortable with. She was old enough to get scrapped/bruised/do crazy stuff, but not old enough to understand things weren't safe yet...so for me, treating her was a good option. If she had a 0 count I think I'd wrap her in bubble wrap and keep her in bed all day =) (Ok, to be honest, I wanted to do that at a 40k count, too!) She was also starting preschool, so i felt safer with her at a higher count.

And...She was also a little clutz, which didn't help! (Seriously, after being diagnosed...girl walked into the corner leading to our kitchen and ended up with a bruise on her face. The wall had been there since she was BORN!)
JulieP
  • jpoisson13
24 Feb 2010 20:23
Replied by jpoisson13 on topic cesar
C started preschool about 2 months after she was diagnosed. Luckily, her counts were around 60k her first year.
I talked to the teachers/nurse/preschool admin before the year started about her.
She also had to wear a bike helmet outside or in the gym (since they rode bikes and such), and she was not allowed on the bouncer at school. She actually did pretty well with the restrictions. This year her counts are much higher, and I actually got all teary-eyed the first time she was able to go on the bouncer!

Do the teachers understand how serious ITP can be? Can you volunteer in the classroom and see if it just a rough bunch of kids or if they are all doing activities he should be? I gave C's teachers permission to talk about it with the other kids...i.e. C wears a helmet b/c she bruises easy, you have to careful and so on.
Really, NO KID ever questioned why she wore a helmet!
I love how oblivious and accepting preschoolers can be!
JulieP
  • jpoisson13
24 Feb 2010 20:18
Replied by jpoisson13 on topic ITP not Child Abuse
Did they do a CBC? If not, I would get one done asap. If it came back with low platelets, I'd be having discussions with the head of DCF, the hospital ombudsmon, AND my state representatives. If a child came in with those symptoms it ended up being ITP and they didn't do a CBC, we'd be having talks. Lots of them.

When C started showing bruising on a Saturday, I wanted until Monday to take her in - I was afraid urgent care would think I was beating her. (11k count, so she looked bad!)
The ped said no way, that any doctor would have looked at her, seen her petechie and bruising, done a CBC and immediately realized it was a platelet issue.

Good luck. That's good that you're able to take her in and help out while this gets cleared up.
  • gsh
24 Feb 2010 20:14
Replied by gsh on topic Acupuncture/TCM?
Chrunchybaby - I was also diagnosed when I had an infant (she was 8 months). I totally think this is hormone related for me. Sorry - no experience with acupuncture.
  • gsh
24 Feb 2010 20:11
Replied by gsh on topic Please help me!! I'm SOOO scared..
Joya - the 5 or so days after a pulse of decadron were the worst. Just stick it out and you'll start to feel normal soon.
  • Sandi
24 Feb 2010 19:14
Mothers! was created by Sandi
I just had a conversation with my 21 year old son that left me laughing hysterically and wondering about myself. I just got home from work and he was on his way out the door. This was it:

Chris: I'm going to a show tonight.

Me: Oh, where is it?

Chris: A club in Pittsburgh.

Me: Where in Pittsburgh?

Chris: I'm not sure.

Me: You're not sure? What if it's a bad part of town. People get shot there all the time! Don't you watch the news?

Chris: Mom, can't you ever just say, "Okay, have a good time"! Don't you ever want me to have fun?

Me: Of course I want you to have fun, but I also want you to be aware at all times.

Chris: Oh great. Now you have me looking over my shoulder all night thinking I'm going to get shot.

Me: Well...you should be careful.

Chris: Okay, I'm leaving now.

Me: Okay. I love you - and be careful!

Chris: "And have a good time"!

And he left. After he walked out, it struck me funny. I laughed so hard the dogs were grinning at me. Am I the only one that thinks like this or is it normal Mother talk?
  • Sandi
24 Feb 2010 18:49
Replied by Sandi on topic Hypersensitivity reactions in lupus
Kim:

Have you tried the Fentanyl patches? That is the only suggestion I have besides low-dose Morphine. I really wish I could use something stronger than Vicodin because it doesn't work very well, but I'm afrais I'd be brain dead.

I have a steriod nasal spray script and use it all the time, along with salines. It doesn't help. I also take decongestants - no help. My ENT wanted to do three separate surgical procedures, but said they only work 20% of the time. Not sure I want to go through all of that for little response.

Did you get through the night okay?
  • Sandi
24 Feb 2010 18:43
Replied by Sandi on topic Rituxan
I'm glad she did ok. I only had a fever from Rituxan one time; in the middle of the night after the fourth infusion. Everyone is different though and that is a known side effect.

I'm glad to hear that your work is so understanding - I'm sure that's a relief!
  • tacmom
24 Feb 2010 18:39
Replied by tacmom on topic Rituxan
We re home now. Caitlin has been sleeping most of the time. I think the benedryl really hit her hard this time. Normally it doesn't effect her that much. Her fever is up to 101.5 so I just woke her up to have her take more Tylenol. This is normal, right? At least that's what I'm getting from the Rituxan website.

I got a really sweet email from my boss. I'm out of days but I've signed up for a leave pool where you give up one of your days and then in he event that you need to use them, they are there for us. However, there are rules like you must be out 3 consecutive days in a row for the same thing and a few other rules to qualify. I've taken off on a wednesday & a Friday but let my dad take care of Caitlin when she was out on Thursday. (wasn't aware of that rule or I wld have taken off.). Anyways, my boss is actually encouraging me to take off tomorrow and Friday so that I can qualify. I just don't know if I feel right asking Caitlin's dr to fill out the paperwork when she says Caitlin should feel well enough to return to school tomorrow. I guess I will wait and see how Cait feels in the morning. She just said that I need to take care of Caitlin and not hae to worry whether I would be docked a day.
  • Sandi
24 Feb 2010 18:38
MUCH better news!
  • Sandi
24 Feb 2010 18:34
Replied by Sandi on topic Please help me!! I'm SOOO scared..
Yes - I felt that way. I was very disconnected from myself and didn't care about anything. My sister was having emergency surgery and I just didn't care. It was very weird to feel that way, but it will fade.
  • Sandi
24 Feb 2010 18:31
Replied by Sandi on topic 80+ year olds?
There have been a few people in their 60's and 70's, but they don't post very often. The rest of us would be happy to talk to you!
  • Joya
24 Feb 2010 17:29
Replied by Joya on topic Teenage ITP: been there done that
Hello!

My name is Joya and I am 21 years old and I live in Amsterdam (The Netherlands).. I was just diagnosed with ITP about two months ago. I just finished another three weeks of treatment on dexamethason. Have you ever had dexamethason before? I have a lot of bad side effects and am currently detoxing pretty bad.. Mood swings, sleepy, pain in my whole body etc..

For me it is very difficult to deal with the fact that I have a disease.. I was a healthy person untill 2 months ago and now all of a sudden I have a disease.. Does ITP effect your life on a daily basis? Did you make any adjustments in your life to keep your counts up? Like eating a special dieet or someting? At the moment I am really looking for things I can do to stay as healthy as possible but I don't really know what I can do to keep my counts up except for taking my medicine..

Joya
  • snowgoose
24 Feb 2010 16:56
Replied by snowgoose on topic 80+ year olds?
I just did a search on the old site using the word "elderly", and it brought up quite a number of topics, but I am not sure how relevent they would be to your situation. Give it a go! :)

Hope you can find something helpful :laugh: .

Vanessa
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