Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

IVIG

  • nb9094
  • Topic Author
  • Offline
  • Just living the dream. nb9094@aol.com
More
11 years 9 months ago #25250 by nb9094
IVIG was created by nb9094
IVIG, is this a guaranty to work, and is it a temporary fix or if goes up will it stay up?

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25256 by eklein
Replied by eklein on topic Re: IVIG
No guarantees. That's true for all the treatments. For most people, if it works it lasts a couple of weeks. For some it lasts many weeks sometimes months. For a very few it has been reported to result in lasting remission.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: nb9094

Please Log in or Create an account to join the conversation.

  • ilovelucy407
  • Offline
  • it has been 3 years alreay since my knowledge of my ITP. it took a year but everything is back to normal and on 10-29-12 i gave blood so that i can help somone in the same condition i was in or worse. it is just a good deed that paid off in the short run.
More
11 years 9 months ago #25257 by ilovelucy407
Replied by ilovelucy407 on topic Re: IVIG
it all depends on the person. when i got my first round it stuck with me and i am going on a year no flair ups.
The following user(s) said Thank You: nb9094

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25270 by Brandi
Replied by Brandi on topic Re: IVIG
IVIG is the only treatment my son has received (dx in Jan 2012)

He had his 5th round last Friday, June 8th. He usually lasts 4 weeks, although this time it was closer to 6 weeks. His counts are high for the first week (120,00+) and drop to the 30's or 40's the next week and then slowly decline after that.

- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25271 by dawn1979
Replied by dawn1979 on topic Re: IVIG
Our hematalogist told us that ivig is like a bandaid it works for a little while but it's not a cure. We did ivig once my child didn't react very well to it. We do the wait and see method

Please Log in or Create an account to join the conversation.

  • nb9094
  • Topic Author
  • Offline
  • Just living the dream. nb9094@aol.com
More
11 years 9 months ago - 11 years 9 months ago #25301 by nb9094
Replied by nb9094 on topic Re: IVIG
Went to Dr today, up from 5000 to 319000. start a taper off pred. on wednesday.
Thank you.

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25318 by dawn1979
Replied by dawn1979 on topic Re: IVIG
thats great news:cheer:

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25375 by Brandi
Replied by Brandi on topic Re: IVIG
Wow, that is terrific!

- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)

Please Log in or Create an account to join the conversation.

  • nb9094
  • Topic Author
  • Offline
  • Just living the dream. nb9094@aol.com
More
11 years 9 months ago #25470 by nb9094
Replied by nb9094 on topic Re: IVIG
Dr's today and not what I was hoping for, down to 90,000 from 319,000. She seems to think it's going to keep droping. She had me stop the taper at 80mg of Pred, might go back to 100mg. (I realy dont like that stuff.) I kind of thought because it went up so high and I got the Med. out of my system that I think triggered it I would be good. She talks like she does not want to give any more IVIG's unless it's for an emergence or an operation. She brought up the dx that Brandi's son was getting and she also talked about a splenectomy. She said sometimes it works sometimes not so. Doc said if she could at least get me to stay at 40,000 with 5mg of pred. every other day she would be fine with that.

Brandi, did you mean 5 day's of IVIG, or 5 different sessions of IVIG? Wonder why my Doc. sounds like that's it.
Did the Rx help? I havent even looked that up. Tired of spending my time looking this stuff up.
Thank you,
Neil

Please Log in or Create an account to join the conversation.

More
11 years 9 months ago #25472 by Brandi
Replied by Brandi on topic Re: IVIG

nb9094 wrote: Brandi, did you mean 5 day's of IVIG, or 5 different sessions of IVIG? Wonder why my Doc. sounds like that's it.
Did the Rx help? I havent even looked that up. Tired of spending my time looking this stuff up.
Thank you,
Neil


He has had 5 different IVIG sessions over the course of 21 weeks. He has formed a pattern where he needs it every 4 or so weeks. The first 2 weeks his platelets are high, in the low 100,000's. But then week number 3 they drop to the 30's and continue to decline. His last treatment was almost 2 weeks ago, so right now he's being a normal crazy 4 year old!

They only do a treatment when his platelets drop below 20,000. For others, they only treat when platelets are below 10,000. And some choose to not treat at all unless there are actual bleeding symptoms. My son is so active, and only 4 yrs old, so we follow the hematologist's advise and treat when he goes below 20,000. To be honest though, I may request that we wait a little longer before the next treatment. We usually end up waiting a week after the bad results before getting treatment (thank you, insurance company) and we do just fine. I might even wait until school starts again before doing another treatment.

The IVIG is definitely a band aide, and from what I've read (and from my son's case) it is normally for the numbers to drop again... and again... and again.

That being said, our cousin also had ITP when he was 4 yrs old (this was a few yrs ago). He had one IVIG treatment and that was all he needed! So every case is different.

- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
The following user(s) said Thank You: nb9094

Please Log in or Create an account to join the conversation.

  • nb9094
  • Topic Author
  • Offline
  • Just living the dream. nb9094@aol.com
More
11 years 9 months ago - 11 years 9 months ago #25474 by nb9094
Replied by nb9094 on topic Re: IVIG
Forgot Rx Stood for prescription, Doc said something about another drug she might try. I think she said something about it being expermental?? My medical is through the VA, I trust her, so ill do what ever she thinks is best.
Thank you very much
Neil

Please Log in or Create an account to join the conversation.

Moderators: jaycharness