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!

Severe Chronic ITP pregnancy complications

More
13 years 5 months ago #29064 by jbarnes
My gf is currently 5-6 weeks pregnant. We found out a few days ago when she fainted and was hospitalized. Her count was around 13 with dehydration (which I heard makes the count appear even higher?).

Her BG: ovarian cancer, after treatment aquired ITP. Has had splenectomy and though improved some she still requires regular transfusions as her antibodies still attack too many. She also is low on two of her 7 wbc as they are also effected. She had a baby 2.5 years ago and the pregnancy was very risky with more than monthly transfusions and I'm not sure what other treatment she received.

We're pregnant again and her counts are severely low especially for only 5-6 weeks of being pregnant. I'm afraid its too much of a risk to continue as she had a transfusion 3 days ago that should have boosted her to 150 but test show it fell to 95 in three days. She gets bloodwork done again in 3 days. I have read alot of different sites and research documents... few really cover her severity and most say transfusions are only a last emergency resort as the life span of the platelet is 3-5 days (which makes sense that her platelets fell so much in 3 days).

Are there any serious complications we should be aware of? I'm afraid the risk isn't worth the reward -- if it means risking her life at all. It appears the pregnancy has cause the increased loss of platelets as she's never had a count quite this low before. Could the pregnancy effect her health after delivery? We have beautiful child now, I don't want him to miss out on his mom at all.

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

More
13 years 5 months ago #29066 by eklein
Replied by eklein on topic Severe Chronic ITP pregnancy complications
What are the transfusions of that she gets? Are they platelets? IVIG? Something else? There are many other treatments, your gf has a complicated medical history so we couldn't say here which ones would be right for her but have they been considered? Do you have a good hematologist?
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

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

More
13 years 5 months ago #29067 by jbarnes
Replied by jbarnes on topic Severe Chronic ITP pregnancy complications
She says he's the best, but I'm not sure. She's getting platelet transfusions. No known drugs she's told me about. I should also say that the day after she was very upset and scared cause a second pregnancy will likely be worse, since she's been painting a sunnier picture which means I don't have the real information infront of me.

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

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 5 months ago #29069 by Sandi
jbarnes:

If she is indeed having platelet transfusions, she is lucky to get more than a few hours of higher counts. Platelets do not work for ITP and it is not considered a treatment. It is used for bleeding or surgeries, not to bump platelets up. You say she has the best doctor? Unless there is something missing here, she is not getting valid treatment for her situation.

Many women with ITP have successful pregnancies, but they have to also have a good high risk OB and ideally, a hemo who is experienced with ITP.

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

More
13 years 5 months ago #29087 by Ann
Agree with Sandi. The usual ITP treatments during pregnancy are IVIG infusions and steroids.

Also which white blood cells are low. Neutrophils are important, the others far less so.

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

More
13 years 5 months ago - 13 years 5 months ago #29106 by jbarnes
Replied by jbarnes on topic Severe Chronic ITP pregnancy complications
Thanks for the replies, I am trying to piece this together and her story just doesn't match what I'm reading everywhere online.

I spoke with her today.

She said they are only doing the platelet transfusions. As for IVIG, she's looked into it before but Dr., insurance and herself decided against it due to high cost and relatively low (3-4 week) benefit. She is on no known steroid or any other drug unless it was given intervaneously while at the hospital. They supposedley gave her enough for 150k count (5 or 6 bags she said), 3-4 days later she was at 95k. She's supposed to get blood work done again tomorrow...

Every fact I can and show her, she discounts with "the human body is a funny thing, it can just change over night" or some other saying and completely downplays her situation. Frustrating, that she's sugar coating this so much. She is Refractory Chronic ITP.

Question, if this is the actual approach she's taking, what realistic fears should I have? If we can't afford the treatment that's needed, isn't this pregancy going to be a huge risk to her health? She had many complications last time. Sounds like this Dr. doesn't know what he's doing but is a hemotolgist she says and supposedly top rated...


Thanks for your responses.

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

More
13 years 5 months ago #29107 by jbarnes
Replied by jbarnes on topic Severe Chronic ITP pregnancy complications
also she said the two that are low begin with an n like "new" and a p, she can't remember how to say them... but neutrophil seems like what she was talking about.

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

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 5 months ago #29110 by Sandi
Neutrophils, Lymphocytes, Monocytes, Eosinophils, and Basophils. Those are the 5 types of white cells.

No, it does not add up. IVIG is expensive and does not usually last long. 3 - 4 weeks is even a stretch and I don't know how much your insurance would cover. In a patient who is not pregnant, IVIG is not a good treatment long term due to those reasons, unless they do not respond to anything else. In a pregnant women, it is one of only two options, and most women do use it during pregnancy if they do not want steroids and want to keep a safe count.

As for steroids, there is no way to determine a dose that will bring a patient to 150k. Everyone gets a different response...some could go higher, some lower, and some will not see any platelet response. It is a very cheap way to manage ITP during a pregnancy if the patient responds and wants to maintain safe counts. The pills are less than $10.00.

Good luck with your situation. Maybe you could go to an appointment with her to get a better idea of what is going on.

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

More
13 years 5 months ago #29112 by Ann
The truth probably is that IVIG is being refused by the insurance company and the doctor wants to avoid steroids early on, which makes sense as there are questions about steroids damaging an early foetus. So platelet transfusions are the only thing left. If she is tolerating them and it keeps her count up then it seems okay. If she has a count of 90 or so after a few days then it doesn't seem that her ITP is very active anyway so the odd transfusion may be the way to go.

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

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 5 months ago #29115 by Sandi
Well, platelet transfusions used too often can cause alloimmunization and a risk of infection. She has a long way to go. Like I said before though, there might be more to this than we know.

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

More
13 years 5 months ago #29116 by jbarnes
Replied by jbarnes on topic Severe Chronic ITP pregnancy complications
thats my opinion, if you were having complications say 2nd trimester then I get it, but to be passing out at the hospital in 5 weeks then not proceeding with the correct treatment is a recipe for disaster.

If she stays this course she risks alloimmunization. She's young but with a splenectomy that had to have decreased her immune system so regardless of her age she's more susceptable to other infections/diseases. My opinion is that if she and her Dr. aren't willing to go at this the safest way isn't she creating a scenario in which her life could be severely reduced, even if she makes it to term. Pregnancy is hard enough on a healthy woman. I've read that platelet transfusion is even less effective on a woman with prior pregnancy (though it didn't explain and alot of studies have alot of data).

I'm having a hard time understanding alloimmunization... can you sum it up at all?

Thanks again!

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

More
13 years 5 months ago - 13 years 5 months ago #29117 by Ann
I was presuming that she wouldn't be having the transfusions very often. If her count has only gone down to 90 in four days or so then it may not go down far enough for another transfusion. She doesn't have to keep a normal count at all, just a safe one.

You talk of the 'correct treatment' but I have said, steroids probably aren't it yet, and it seems that the insurance company is refusing IVIG. So what would you say is the correct treatment?

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

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 5 months ago #29122 by Sandi
Alloimmunization:


•Alloimmunization against platelets (platelet-specific or HLA class I antigens) ◦Refractoriness to platelet transfusion (an increase in the platelet count after platelet transfusion that is significantly lower than expected [eg, < 30% of predicted after 10-60 min or < 20% at 18-24 h posttransfusion])
◦Posttransfusion purpura (thrombocytopenia after transfusion of red cells or other platelet-containing products, associated with presence of platelet alloantibodies)
◦Neonatal alloimmune thrombocytopenia (mother's alloimmunization against fetal antigens, most often resulting from previous pregnancies)

emedicine.medscape.com/article/134958-overview

Basically, it is a problem that can occur after a few platelet transfusions. The patient either becomes refractory to the transfusions or becomes 'allergic' to them and can have reactions.

I don't know what to tell you, we are thinking out loud here (well, I am). I still think the best thing you can do is to go with her and ask questions yourself. Maybe then you would get more information and discover the doctors reasoning.

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

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 5 months ago #29123 by Sandi
Here is a good, credible article. Scroll down and you will find a whole section on pregnancy and ITP.


bloodjournal.hematologylibrary.org/content/115/2/168.full

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

You’re not alone. We have answers!
Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or pdsa@pdsa.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.