Trying to be positive, but hard

I was diagnosed with ITP 2 month ago. Predinisone did not work for me, so the doctor took me off of it. I had 3 days of IVIG twice and I am finishing up my third IVIG tomorrow. Right after IVIG, my counts go up high, but it drops down quickly. I have been doing CBC every week. The doctor said last week that every time my number starts to drop down, he wants me to do one day of IVIG. I am afraid that IVIG is so expensive, how long my insurance company keep paying for it or I may get fired from work since I am doing this expensive treatment so often. My doctor said other treatments are even more expensive. I am trying to be positive but it is hard sometimes. I am 55 years old and have been healthy until I got this ITP.

Keshoban:

Hello. ITP does get easier. It takes some time though. IVIG is an expensive and time consuming treatment, and it is very temporary. There are other treatments that can cause remission or maintain counts easier, so in the long run, you'd be better off trying something else. It's a good idea to learn about your other options and suggest them to your doctor. ITP patients have to advocate for themselves; some Hemos are not up to speed about the latest ITP info or are too set in their ways to look at other alternatives. You can read about the experiences of others on the Forum. Some treatments to look into: Rituxan, N-Plate, Promacta...to name a few. IVIG is just a rescue treatment - one to get counts up in a bind. It should not be used as an on-going thing unless you do not respond to anything else.

When I was diagnosed with ITP, I still considered myself to be healthy. The only thing that made me feel sick were the treatments which can be worse than the disorder. You should know that 30k is a safe count, so if you are anywhere above that, you're doing fine. You don't have to have normal counts. Symptoms are more important than the actual count.

The best advice I can give you is to learn all you can. It will benefit you more than you realize.

Thank you Sandi for responding. My last platelet # was 18 dropped from 120. I did IVIG for three days two weeks before that. Right after the second IVIG, the number jumped high, then two weeks later, it dropped from 120 to 18. I start getting bruises and blood blisters on my legs and arm when the number go down to 20, I think. I don't have nose bleed or blood in urine. I will ask my doctor about other treatment that may help me better this week. I just discovered this PDSA and I will learn more about ITP.

Hi Keshoban - I just remember back in 2002 when a tetanus booster brought me out of "remission" - my hematologist told me she had never had anyone go into remission with IVIg. Now there was someone on here a while back who didn't respond to any treatments that were available at the time other than IVIg.

You have probably seen the treatment section but I'll put it here anyway:
pdsa.org/treatments.html

Good luck to you!

Hi Keshoban - I am 68 and was diagnosed 5 months ago. Prior to that I was always very healthy with no health issues and have had a very difficult time adjusting to having ITP. My hemo first put me on Prednisone which did not work for me either. Then I did the 4 back to back treatments of Rituxin, and finished those 2 weeks ago. Right now I am on wait and see to see if my numbers go up. My last count was 38 but I have been going up and down pretty consistently since the beginning. I know it's difficult to figure out which treatment to do and how frustrating all of this can be. As suggested, read about the different treatments, and the side effects, so you know what's out there. I discussed different options with my hemo which I found helpful.

As Sandi says it does get easier with time. Good luck to you!!!!

Thank you everyone for sharing your experience. I am reading more about ITP treatment that works for different people. I ordered a bottle of Papaya Leaf Extract last night. I am going to try it. Something has to work for me......

Hi Keshoban,
My 9 year old son has had 6 visits to hospital to have IVIG lots and lots of bottles of the stuff. I feel so sad when I hear your story, I have not had to pay for a single drop of that life saving treatment here in Australia it is all paid by Medicare. Im feel so hurt to think others like yourself are made to pay for there treatment. I am so blessed to be here.If I had to pay for every drop I would nearly have to sell my home as you are right it is very costly.
Feeling for you