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Living on IVIgs

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15 years 4 months ago #5056 by rentalaraj
Living on IVIgs was created by rentalaraj
I am responding good with IvIg and could I just be on IVIgs for some months before I decide with any other drugs
Please help me out as my Hemo is forcing me for a Promacta or spleen removal
I drop to 8k in a month after IVIg (no brusing or bleeding)

I want to be on IVIg as it has less side effects than other drugs
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15 years 4 months ago #5060 by rere
Replied by rere on topic Re:Living on IVIgs
IVIG is very expensive, takes hours for delivery and does not keep your count up for any extended period. Hematologists consider it a rescue treatment. If this is what you want to do for a few months while considering other treatments that are available it may be worth it. Are you treated in the hospital or doctor's office? How long does the infusion take?
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15 years 4 months ago #5061 by gsh
Replied by gsh on topic Re:Living on IVIgs
I understand why you'd want to do IVIg only for now but I'd recommend throwing in a short prednisone taper if it works for you. Good to shake things up a bit maybe and get a break from the long IVIg days.
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15 years 4 months ago #5062 by snowgoose
Replied by snowgoose on topic Re:Living on IVIgs
Hi,

The problem with using Ivig on an ongoing basis is that it is possible to become refractory to it, which would would mean that in an emergency it could have little or no impact on increasing platelet count.

This is what happened to me just prior to entering the Promacta/Eltrombopag Trials three years ago. It was quite a scary place to be in, as I had also become refractory to standard platelet transfusions also. This meant that my emergency options were very limited.

Talk to your Haematologist :) .
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15 years 4 months ago #5109 by donswife48
Replied by donswife48 on topic Re:Living on IVIgs
Hi, my husband has just been diagnosed with ITP May 11th. He received platelets and IVIg in the hospital, went home with Prednisone, but his count has been dropping with Prednisone so he's set up next week to do IVIg 5 days. We were told that if he doesn't keep his platelet levels up, they would do a booster(?) treatment when he needs it, they told him some people need it once a week, others once a month or more. It wouldn't be a full treatment, just a one time treatment when he needs it. Has anyone been treated like this? Chemo nurse said this is how most people with ITP that doesn't respond to Prednisone is treated, IVIg is one of the first choices of treatments.
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15 years 4 months ago #5111 by farida
Replied by farida on topic Re:Living on IVIgs
hi rere how are you doing now , how is your last count,i havn't done cbc to my son since 1 month , im worry to do it,
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15 years 4 months ago #5112 by Ann
Replied by Ann on topic Re:Living on IVIgs
Donswife, there are other treatments to try besides prednisone and IVIG. Things have moved on since those were the only options. I can't think that anyone would do IVIG every week nowadays. If that's all your husband is being offered then maybe time for a second opinion.
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15 years 4 months ago #5113 by rere
Replied by rere on topic Re:Living on IVIgs
Donswife, I agree with Ann. Sounds like you need to get a second opinion. This site has a lot of information about different treatments for ITP. Knowledge is power. I would read all I can and ask a lot of questions.
Hi Farida.. all is well. I have been thinking of you and your son. Two months post surgery my platelets are 106 and I am thrilled. Previous count was 99 so seeing a rise was a big Wow for me. I know you are anxious for your son. I feel anxious too dreading the next CBC. Trying to take one day at a time. Kind regards.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #5115 by Sandi
Replied by Sandi on topic Re:Living on IVIgs
IVIG is great on a short-term basis, but it is usually only done long-term for those who don't respond to anything else.

Rental - you said that IVIG has fewer side effects than other drugs. Are you saying that because you've had side effects from other meds or because of what you've read?

Don'swife - sounds like the doctor's office is a little behind the times. IVIG is not necessarily the way people who do not respond to Prednisone are treated.
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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.


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