Predinose Failure Next steps

I was recently diagnosed with ITP started on Predinose 80mg daily. I have had 3 platelet counts over the past 4 weeks with the best being 23 and now back at 10. My hematoligist want to do a bone marrow biopsy next to see what going on, just wonering if anyone had any insite on what to expect and if anyone has recieved any of the new platlet stimulating medications?

The bone marrow biopsy is not that bad,hurts a bit but is very quick. Most drs will give you some Percocet before it if you want it. There are many people on this forum who have used the new medications. Also you can read about them in the treatment section on this website.

Ahhhhh, yes. The lovely bone marrow biopsy. I think we're all BIG FANS of that one here on this site.

I'm not sure if it is in this topic, or in "Frequently Asked Questions" but in one of the other locations there is an ongoing thread about bone marrow biopsies for ITP.
You really should read through that thread before consenting to a bone marrow biopsy. I read through that entire thread and all of the supporting evidence before I did mine.

Prednisone didn't work for me either. After being diagnosed, I was started on the RIDICULOUSLY high dose of 100mgs a day. We knew pretty quickly that it wasn't working and then started on the long process of tapering off of a dose that high.

My hematologist then broke down the next steps for treatment in tiers (and I found this really helped me wrap my brain around this, initially):

Tier 1: Prednisone (or other corticosteroids), IVIg
Tier 2: Rituxan, WinRho (or other Anti-D meds), Spelenectomy
Tier 3: Nplate, Promacta (other newer TPO receptor antagonists).

I went through Prednisone, IVIg, WinRho and 3 doses of Rituxan before I consented to a bone marrow biopsy. It told me nothing. Then, because of a secondary medical condition, I had a splenectomy (which so far has only mildly slowed my body's rate of platelet destruction).
But I'm not "normal" or so my Doctor keeps telling me. Soooooo don't take me for a "usual case."

As for what else to expect, we can all tell you our stories but your situation will be completely unique to you.
Here are a few things I took away from learning about everybody else's ITP history;

1.) It's okay to be anxious, scared, overwhelmed, irritated at first...

2.) ... but "regular life" will return as soon as you come to accept the diagnosis. Promise, promise.

3.) A low platelet count is often just that... a low platelet count. Eventually, you'll begin to redefine "normal" and a platelet count of 23 won't sound as terrifying as it did in the first few weeks you were diagnosed (at least that's what I keep telling myself).

4.) Steroids suck. For everybody. Equally. We all feel everybody's pain with them.

5.) What worked for me, might not work for you. And vice versa.


When I was first diagnosed (not all that long ago, actually. It was just back in December), I used the message board and a place to read stories and gather ideas and information. Then I went and researched the crap out of everything I read. Every time I met with my doctor(s), I'd have these looooooong lists of things to ask about. We had a lot of conversations that I don't think we would have had if I hadn't asked the questions.
You can find out A LOT just by reading through this website and taking notes. Yeah, it feels kind of like school again but I think doing so helps in coming to terms with what is happening.

I think I got off topic. Sorry...

Back to bone marrow biopsies... I don't even REMEMBER mine. As pre-meds for the procedure my doctor gave me Versed and Fentanyl. One of the AWESOME side effects of Versed is anterograde amnesia.
So I was conscious for the entire procedure, able to communicate and everything, but I have NO memory of the biopsy itself.
Which is nice.

I was sore for a couple of days afterwards, but then I was right back to normal.

Wrapping this novella up, poke around the message boards and the site. It's a lot to read, but you'll be glad you did afterwards.

I hope all goes well and I wish for you HIGH platelet counts!

Great response, Kay! All true!

Just wanted to add....I had no pre-meds for the bone marrow biopsy and did just fine. No trauma, nothing. It was over in 20 minutes and I went home. The fear of it was worse than the procedure.

The procedure itself wasn't bad....I walked home from the doctor, it was almost a mile, and uphill. The worst thing about my BMB was waiting for the results. When I had it done in Sept 2001, I did not know about this group, all I knew was that my platelets were lower than normal. The hema was 45 minutes late for our appt, and I was a wreck.

I had my BMB before any treatments. At the time I was glad to know I didn't have anything diagnosable from the BMB results. Now I would tell someone to wait until splenectomy is being considered.

KayL,
Thanks for the encouragement. Had my bone marrow test but still waiting on the results. Hematologist has decided I should have IVIG and some platelets until results get back, since my count was down to 5! I am still not experiencing a lot of symtoms I would think are associated with some other blood diseases or cansers, but guess I will have to wait and see the results from bone marrow. Does IVIG usuallly gve an immedicate boost to platelet count?
Thanks again.

For most people the response to IVIG is very quick,followed by a slower decline over the next 2 to 4 weeks. But some people get no response, in others the treatment is a little slower to give a "reasonable count" of over 30,000 ,and the lucky few get remission.
From my own limited experience there was no response to 60mg / day of prednisone over 3 weeks, the dose was then reduced to 30mg / day and IVIG given over 2 days. My counts went up to 197000 after 2days and 240000 after 5 days. They slowly decreased over the next month but never went below 25 while the pred dose was slowly tapered to 20 mg, and MMF started and continued for 2years so far.
That has been my response to IVIG except to say I had no side effects from the infusion, although others do, but the side effects of the pred were something else.
Derek

Hi - I've had lots of Ivig - diagnosed in dec 2012 & had a platelet count of 1. Prednisolone didn't work at all - my high was a count of 10. I had four full doses of Ivig - thie first only raised my count to 22, the next to 55, the next to 138 and then the next to 207. It really is different for everyone. So far I've refused anything more 'chemical'-ish. I'm currently on a quarter does of Ivig every 3 weeks to try and keep me stable and I'm hovering between 30-50 and living a perfectly normal life.

My advice for getting through Ivig would be to drink lots of water - it can cause headaches but I find keeping week hydrated before, during and after (for a couple of days) treatment really helps. I also bruised horribly if they put the iv in my hands - putting it in a bigger vein further up my arm always caused less damage. Over new year my wrist and inner hand was almost black yuk!

Good luck with it and glad your bone marrow biopsy wasn't too bad for you