Advice please!

Hi All,

I'm scheduled to have IVIG treatment this Thursday and Friday. However, I have this feeling in the pit of my stomach that I shoult NOT go through with it. Based on research and dicsussion with other ITPers the treatment doesn't seem appropriate right now - I could be wrong, I suppose.

Here is my situation.

I was diagnosed on 11.16.12 when my count was at 2,000. I was given 70mg of prednisone at that time and have taperd all the way down to 22.5mg of prednisone. My counts have no gone below 55,000 sine I was discharged from the hospital on 11.20.12. My counts fluctuate between 195,000 and 55,000 based on cutting and adding mg of prednisone.

I am under the impression that IVIG is a temporary fix for "emergency" situations involving extremely low levels or to sustain levels temporaril for surgery. In my opinion, my levels are not extremely low, and I am not having surgery - so why the IVIG?

My last count was 130,000 and that was a week ago.

Is it because the steroids haven't brought my counts above the "safe zone" of 150,000 on a consistent basis in 3 months?

My question is this - should I go through with the IVIG treatment this week? I don't want to experience the horrible side effects everyone talks about if I don't NEED the treatment. Also, after three months of playing the "prednisone game" - how long should I wait before I try another option and ween off of the steroids? Advice please!

Thank you,

Samantha

Samantha,
From what you describe, it does sound like you might not need IVIG at this time. Your counts are staying at or above 55k. That's a safe count for pretty much everything except knife fighting.
One reason to consider IVIG could be to know if it works for you so you know if it is a possible emergency rescue treatment. But I don't think most people use it that way.
Does your doctor give any reason why you would do IVIG? It is also super expensive (maybe covered by insurance but somebody is still paying for it)and of course carries risks, so not something to be taken lightly.
Good catch - you could always postpone the treatment until you can understand more what your doctor is thinking.
Erica

I agree with Erica. For most people, a safe count is probably closer to 20K than to 150K. My hematologist will not even think about treating unless the count is under 30K OR there's bleeding. Delaying the treatment doesn't mean you will never get it; but if you're unsure why it's being prescribed, now is the right time to ask!!

Samantha


You should talk to the doctor to see what he is thinking. He might be trying options as he would like to get you off the prednisone. You are young and long term effects of prednisone can be very unhealthy. You have not been on it very long now but you are not yet sure what will happen when you taper all the way off.

There are some people who use periodic IVIG to keep their counts over 30k. It is used with children too. Some people do not have side effects from IVIG. So discuss this with the doctor.

Dru

Note : Knowing what prednisone does to your adrenal glands is important. I have not met a Dr. yet that has explained this directly to me. Prednisone shrinks the adrenal glands & this is why its important to taper.... Long term use is noted by the Manufacturer......!?.....Pay Close attention to diet........Try vitamin K. everyday. Its Just a vitamin. Healthfood store, average is 100 tabs for $7.00
Always Remember: Drs. Get paid When your sick. Healthy people have little interest to them. I have met Highly Skilled Caring Drs. & I have met Drs. That would Treat treat treat treat, their wallets. My understanding is that Drs. have less than a credit of Nutrition training in School.In a day or two, you & most others could teach themselves more than what most Drs. know of health. Remember again : theres No $$$$$$ for your Doctor, if your healthy.

Sam, I wondered about the IVIG treatments when you posted on another thread. I agree with the previous people here--"safe" might be considered 50K or above by a fairly conservative hemo, but not 150K. Has your hemo had much experience with ITP?

Benefit vs risk. In this situation, what is the benefit? What is the risk?

My hematologist indicated to me that counts stable at 50+ wouldn't require any drastic treatments like IVIG...only if 30 or below and that would depend on whether there was bleeding etc. Seems weird to me that your counts have been above 100 but yours wants to do IVIG...not something to take lightly. Agree totally with Sandi...do the benefits outweigh the risks? Personally, the IVIG treatments had some pretty significant side effects for me...so I wouldn't be inclined to do it again unless I had to.