How long did your IVIg treatment raise your platelets?

Hi everyone! I've just recently been diagnosed with ITP about a month ago. I haven't responded to any steroids and my counts have remained under 3. I just completed my IVIg infusions yesterday to see how I respond to that. PDSA states that IVIg is effective, but the results are short lived. For those of you who have been treated with IVIg before, how long did it raise your counts for before you relapsed again? Thanks for the help!

Welcome Bflorovito.
A typical response is 1 to 3 weeks. Platelet counts can be anywhere from no increase to one's normal pre-ITP count level (plus a bit more). One's response depends a lot on how much IVIG one has had and what type of destruction is going on - spleen or liver, platelet or TPO or TPO-R.

In my case, which was a little IVIG administered slowly over five days, counts went to 308 and lasted about 4 weeks. The 308 is completely typical but the 4 weeks was longer than most.

If you haven't seen this yet, this is a good primer on Thrombopoietin and Platelet Production. The terminology is initially really overwhelming. Skim past the complicated stuff.
www.ncbi.nlm.nih.gov/pmc/articles/PMC2789970/

Hope this helps...

As Hal said, IVIG usually doesn't last long. It's a good rescue treatment to get counts up, but isn't a great option for long term treatment. It generally buys time until another treatment plan can be put into place.

Thank you very much! This was extremely helpful. Everything is still so new to me.

Thanks, Sandi! I wonder what other treatment plans are available? This is all still so new to me, so I'm still learning.

Rituxan
Win-Rho
Decadron
Promacta
N-Plate

These are the most common.

My opinion is Nplate and Promacta are the direct ones.

All the others are secondary.

Ha, that would be my opinion too, Jay, but we don't get to make the decisions.

Bigger HA !

In my opinion it is far more complicated. Certain identifiable folks can get remission:
- through Steroids (immuno suppressants), or Rituxan, or NPlate/Promacta
- through NPlate or Rituxan
- through NPlate/Promacta
- through Danazol
All others (a non trivial percentage) have no remission path. Here is where NPlate and Promacta have there true power in taming and managing ITP. Where the quality of life for the ITP'er can return to normal because remission is not required.

Remission is never required. Safe counts are. Maintaining that while regaining quality of life is the goal. Of course remissions are nice, but sometimes patients have to settle because there is no choice.

My opinion is splenectomy should be considered anyone under 50 if they have has 1 or 2 years of treatment and remission is not achieved.

Splenectomy can always be considered as long as it is a valid treatment option. I can understand the temptation of wanting to get off of all medications and take the risk. Treatments can have long term side effects.

My only hope is that people understand those risks before agreeing to it. In my case, I am very glad that I didn't do it. I almost did. I ended up being diagnosed with Lupus and have been on numerous immunosuppressants for the past 10 years....Imuran, CellCept, Prednisone and Methotrexate, etc. I never saw that coming. I also tend to have low white cells. My mom has been in and out of the hospital, skilled nursing facilities and assisted living for the past year and I am exposed to many things. Just today they called to tell me that she has C-Diff (again) and I just visited and touched her yesterday. I thank God that I kept my spleen now. No one knows what the future holds and that spleen might come in handy someday. If splenectomy were a sure cure, the decision would be easier, but it fails way too often.

I also have APS antibodies. That combined with splenectomy raises the clotting risk. I didn't know any of this when I was considering having my spleen out. I was young and healthy other than the ITP. Ironically, what actually kept me from doing it were two women who had stories exactly like mine turned out. One of them had clotting with low counts and nearly died a few times. She had to juggle low counts and blood thinners and always said that the clotting was worse than the bleeding risk.

I thought long and hard, argued for and against having it. In the end, it came down to I wanted off the pred. I honestly can't say I'm sorry I did it, just disappointed in the outcome. I was 47.

As somebody who has recently had a splenectomy I would say only consider it as a last resort.

Yes my case was a rare in so far as they had to remove my spleen via open surgery which is rare these days but it still is a major operation, plus once it's out it's gone for good and there is no going back.

Thanks, everyone! This is a lot of great info. The IVIg got my platelets up to 131. Unfortunately, I got my counts rechecked today and they are at 64. I get my counts rechecked again in a few days, and if they are below 30 my hematologist said we're going to start the Rituxan.

Bflorovito, what I find nice about having an IVIG response is the security of having it available as a known method to increase counts. Like if one needs their appendix out or something.

You may want to look at ' DRoberts264 ' story. It was the closest to yours I could find. And with that, I suspect Rituxan may not work. A different outcome is of course possible - just as spontaneous remission is possible.

I'll go with Jay and Sandi and their previous comments. Think about skipping Rituxan and going directly to NPlate/Promacta.

Good luck...

I am one of the fortunate ones who responded well to IVIG & had lasting results.
Too long a story, suffice to say I had to raise platelet numbers up 3 times from usual 30 due to a nose bleed, a colonoscopy & appendectomy.
Each time my counts rose to above 150 & gradually decreased over 12 months.
Prednisolone turns me into a monster, I steadfastly refuse to let go of my spleen & have managed to avoid other treatments. (Being an older, feisty country woman probably helps!)
mj

Thank you! I saw a different hematologist in Philadelphia a few days ago. He discussed all my treatment options with me, and mentioned NPlate/ Promacta. They concern me a little because of the risks he mentioned. How common is it to develop bone marrow disorders with them? Also, how long can they be used for? I'm only 22, so what concerns me the most is finding a long-term treatment option that doesn't ruin any other aspects of my health. Maybe that doesn't exist? ahah I'm not sure at this point. I get my counts rechecked tomorrow.

IVIG only lasted about 2 weeks for me each time that I had it and then my counts took a nose dive.

I know what you mean about the risks associated with NPlate & Promacta. Do they really know the long term affect? I don't think they do. From what I understand, the average time most people are on them is generally 6-24 months. It depends on how you respond to them.

I just saw another hemo for a second opinion. He has about 5,500 ITP patients and seems to favor the TPO agonists, but is open to anything that works. I am awaiting my thrombopoetin results before I decide on Nplate. He is the ONLY hemo I have seen who ran a full panel of tests including one to see how my body responds to thiopurine drugs (like Immuran). He says that some people don't break them down and it is good to know before you risk taking them.

I wish you well...

Erin

Bflorovito, I can't comment on the bone marrow stuff. Absolutely, higher doses of any drug would seem like a concern for long term use. Keep in mind though that TPO mimetic drugs may seem like a forever drug today but new and better treatments are bound to happen. It is reasonable to expect great advances in the not too distant future.

There is an interesting treatment on the immediate horizon. Specifically, I wonder if you might be one of the 18% of ITP'ers that respond strongly to Fostamatinib. I think it is supposed to become available for use perhaps as early as next year.
www.pmlive.com/pharma_news/rigel_shaken_after_fostamatinib_misses_phase_iii_trial_target_1173284

Mommabear, good luck with Imuran.
' julia ', who seems to have similar steroid and IVIG responses as you, got remission with it after 3 years. If you start it perhaps you can add to what julia has said about it. Side effects and stuff like that.

After 3 rounds of IVIG and 4 dexadron blasts my count peaked at 217 in mid-May. I lost 20-30 some weeks, then just 10 a week, but this past week I lost 25 and yesterday got my first Nplate injection at 74. So the IVIG helped for 2 months max. I went with Nplate for Two reasons. Rituximab scares the hell out of me. Medicare will not pay for Promacta ($7000 a month). I tolerated the Nplate so far with just the taste of turpentine in my mouth.

FYI, I had my 1st N-plate 7 days ago at 74. Rechecked today at 120. I am a happy camper! Minimal side effects for me.

Keep an eye on those counts! You may need to have the dose lowered to maintain counts around 50k.