Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Chronic ITP sucks

Chronic ITP sucks 6 months 2 days ago #65791

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
Ive been dealing with Chronic ITP for 2 years now. I went to my hematologist Friday and my platelets were at 30,000. They are going to do the bone marrow biopsy and depending on what those results are determines if i have surgery to get my spleen removed. I am terrified. ITP sucks.
Platelets please..

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

Chronic ITP sucks 6 months 2 days ago #65794

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
Yes, full agreement, it does suck.
Promacta or Nplate is not an option? On the biopsy. It's good to get one done before starting either one of those drugs as well. Still, if you respond to IVIG, the biopsy results should be good.

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

Chronic ITP sucks 6 months 2 days ago #65795

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
With IVIGs, they only raise my platelets for a few weeks and then they drop really low again. They tried prednisone but that didn't work. I can't take the other IV medicine, it starts with an R. I just really hope the biopsy results do come back good.
Platelets please..

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

Chronic ITP sucks 6 months 1 day ago #65816

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
On the IVIG. By a few weeks do you mean four or five?

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

Chronic ITP sucks 6 months 1 day ago #65817

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
When i get the IVIGs, they go up to 200 for 3 weeks and then drop down to 30,000 or less.
Platelets please..

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

Chronic ITP sucks 6 months 1 day ago #65819

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
Oh, ok. That sounds like the same response I have: no steroid response and strong IVIG response. This is row 3 in my ITP treatments table.
bottools.com/Hal/ItpTypes.html

FYI, I get by very well with 12.5mg Promacta or 75mg of Danazol either one. Danazol is cheap. One can get Promacta for free with low income.

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

Chronic ITP sucks 6 months 1 day ago #65831

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
What are you terrified about? We can help to alleviate your fear.

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

Chronic ITP sucks 6 months 20 hours ago #65833

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
I just hope that if they do the spleen removal that it will fix the platelet issues for good.
Platelets please..

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

Chronic ITP sucks 6 months 20 hours ago #65834

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
I am terrified about if thr biopsy comes back with bad results, and I am terrified that if i have to have the spleen removal, ill be in the hospital for a little bit away from my 3 kids.
Platelets please..

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

Chronic ITP sucks 6 months 15 hours ago #65836

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1251
  • Karma: 7
  • Thank you received: 306
There is absolutely no guarantee a splenectomy will work. Have you tried N Plate or Promacta ?

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

Chronic ITP sucks 6 months 8 hours ago #65837

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
What is N plate and projects?
Platelets please..

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

Chronic ITP sucks 6 months 8 hours ago #65838

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
Promacta?
Platelets please..

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

Chronic ITP sucks 6 months 5 hours ago #65841

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
Kayla, they stimulate one's bones to produce more platelets. Most folks have no or very mild symptoms with either drug. For me for example, the only problem I have is mild headache-like feelings at higher platelet counts.

Same is true of Danazol at the low dose I mentioned. It stimulates bone platelet production and reduces one's immune response a bit which can potentially achieve remission, for row 3 folks, given enough time.

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

Chronic ITP sucks 6 months 4 hours ago #65842

  • MelA
  • Offline
  • Posts: 267
  • Karma: 1
  • Thank you received: 81
Do you want a splenectomy or would you have one because the doctor says to?
Do your research - read read read. Again I can't find the page on this site that talks about the different treatments - don't know if it just isn't here any more or I am just missing it. But do your research on legit sites! There are different treatments and you should be able to talk them over with your hematologist and decide which is best for you.

When I was diagnosed in 1989 after a gamma globulin injection triggered my ITP [and gamma globulin is IVIg so a treatment] I was given the option of prednisone or splenectomy - chose pred because the doctor couldn't tell me that a splenectomy would cure me. I had 2 children a husband and a move to Tokyo in the works [did move there while on 60mg of prednisone & not knowing if I'd have a hematologist].

Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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

Chronic ITP sucks 6 months 30 minutes ago #65843

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
I got another CBC done today, and my platelets last week were 30,000. Today they were 24,000. For a week now, I've had dizzy spells, blurred vision, and migraines so they sent me for a cat scan for my head. Hopefully good results. The prednisones never work for me at all. IVIG only work for so long, and I can't take the other meds bc of breast feeding so the splenectomy is kind of the omly option from what the dr stated depending on what comes back from the bone marrow biopsy.
Platelets please..

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

Chronic ITP sucks 5 months 4 weeks ago #65844

  • MelA
  • Offline
  • Posts: 267
  • Karma: 1
  • Thank you received: 81
What were your platelet counts before you became pregnant? Wonder if hormones have anything to do with ITP.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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

Chronic ITP sucks 5 months 4 weeks ago #65846

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
Oh no! I had always thought that it took a sub 10 count before intracranial hemorrhage was possible.
Here is an option. Ask your Doc what he will recommend if the splenectomy fails. After he tells you, tell him you want to do that and forget the splenectomy.

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

Chronic ITP sucks 5 months 4 weeks ago #65847

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
Before I got pregnant with my 3rd, my platelets were in the 20s as well. I have had them as low as 5,000 before.
Platelets please..

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

Chronic ITP sucks 5 months 4 weeks ago #65848

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
That actually sounds like a good idea to tell her to do what she wants to do if the splenectomy was to fail. Thank you for that piece of advice. I will make sure to do that.
Platelets please..

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

Chronic ITP sucks 5 months 4 weeks ago #65854

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1251
  • Karma: 7
  • Thank you received: 306
Kayla
Read, read, read, empower yourself and don't be bullied into anything you don't like the sound of. This should help you get started
pdsa.org/treating-itp.html
The following user(s) said Thank You: MelA, Lman, Kayla93

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

Chronic ITP sucks 5 months 4 weeks ago #65855

  • MelA
  • Offline
  • Posts: 267
  • Karma: 1
  • Thank you received: 81
Thanks for giving her the treatment page mrsb - I'm going to bookmark that so I can find it.

Just what I said - read, read, read. Be informed - know all you can. It is your body!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04

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

Chronic ITP sucks 5 months 4 weeks ago #65856

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
Thank y'all so much. I will definitely be reading up on it. I never know the right questions to ask ky dr so I am sure that this will help.
Platelets please..

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

Chronic ITP sucks 5 months 4 weeks ago #65861

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192

Kayla93 wrote: That actually sounds like a good idea to tell her to do what she wants to do if the splenectomy was to fail. Thank you for that piece of advice. I will make sure to do that.


Right. At least it is a start. If she says anything other than Promacta or Nplate, looking for a new Hematologist would be on my mind. IMHO, very very humble opinion, I'd ask if she had ever treated anyone with Danazol. Not that you necessarily want to do it, but if she doesn't know how, you then know it is not an option with her.

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

Chronic ITP sucks 5 months 4 weeks ago #65862

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 25
  • Thank you received: 0
Is the danazol through the infusions once a week for 4 weeks? If so that is the one i can't take because of breastfeeding. She said it wouldn't be safe to breastfeed while on that, and i know its my health but at the same time I'm trying to strictly breastfeed.
Platelets please..

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

Chronic ITP sucks 5 months 4 weeks ago #65863

  • JJ
  • Offline
  • Posts: 41
  • Thank you received: 12
Danazol is an oral androgen, ie a male hormone. You won't want to take it when breast feeding and want to think twice about taking it anyway unless as a woman you fancy having a hairy chest!

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

Chronic ITP sucks 5 months 4 weeks ago #65866

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1390
  • Karma: 10
  • Thank you received: 192
The one with 4 treatments, one per week, is Rituxan, aka Rituximab. It is a strong drug. One of the extraordinarily rare but possible adverse events with it is: death.

In my reading through hundreds of PDSA member recounts on this web site, the total number of folks Rituxan has helped in any lasting way, who also had no steroid response and a strong IVIG response, the total number is: zero. No one.

Right, keep forgetting about the breastfeed issue. Have you looked up if Promacta or Nplate is good with that? LOL, I admit to not keeping up in that area. I suppose the Doc may have no treatment suggestions given breastfeeding. Isn't IVIG ok? I dunno.

Danazol is a single capsule per day. JJ brings up adverse events (AE). An important issue. Here is a study which lists adverse events and gives a percentage occurrence for each. See table 5.
journals.sagepub.com/doi/pdf/10.1177/1076029615622002
Note that the biggest problem is elevated liver enzymes - which is what happened to me with a 200mg dose. With lower doses, no problem for me.
In addition:
"
... all these symptoms disappeared when danazol administration was decreased or discontinued
"
so problems do resolve on there own. When my liver enzymes went up I just stopped the drug. It took several months for the enzymes to go back down to what they were before, but they did. FWIW, I've not read any study where women hirsuitism was a problem at the low 50mg dose. It's always the higher doses.

What did they do in the old days? What was it, 'wet nurse' ? ?

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

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo