New Article regarding Guidelines

bloodjournal.hematologylibrary.org/content/117/16/4190.full

Interesting Points:


The International Working Group also defines ITP as newly diagnosed (diagnosis to 3 months), persistent (3 to 12 months from diagnosis), or chronic (lasting for more than 12 months).

This recommendation has major changes from the 1996 ASH guideline as we do not find evidence for an age threshold at which a bone marrow examination is required.58–60 The diagnosis of ITP is made by exclusion of secondary causes of thrombocytopenia as there are no diagnostic tests to confirm ITP. The initial history and physical examination should be aimed at identifying evidence of bleeding and excluding other causes of thrombocytopenia or secondary ITP. If during the course of treatment or monitoring atypical features develop—for example, abnormalities in the white blood cell count, lymphadenopathy, multiple cytopenias—then the diagnosis of ITP should be reassessed.

The decision to treat should be based on the individual patient's severity of bleeding, bleeding risk (eg, previous bleeding episodes, coincident risk factors for bleeding such as hypertension and age), activity level (eg, playing contact sports), likely side effects of treatment, and patient preferences.

Observational data of ITP patient cohorts have suggested that bleeding risk is increased with platelet counts less than 20 or 30 × 109/L, but it is unclear whether offering treatment to all patients with ITP at these levels will result in decreased bleeding.

We found no evidence that could allow us to determine a minimum platelet count threshold or specific age at which a typical patient with ITP should be treated. We recognize that the majority of clinicians use the platelet threshold of < 30 × 109/L as a trigger for treatment, and we find no evidence to contradict this practice.

The fundamental treatment goal for a patient with ITP is achieving a platelet count that prevents major bleeding rather than “normalizing” the platelet count.

Our review identified additional data supporting the recommendation of withholding further therapy in patients with platelet counts > 30 × 109/L in the absence of bleeding after splenectomy. In the first prospective cohort study, patients who eventually maintained a postsplenectomy platelet count of > 30 × 109/L experienced no mortality from bleeding; rather, the deaths (5.3%) were because of complications from ITP treatment.

Thank you Sandi,
I actually found this 3 days ago. I went to the Dr and my count was at 98000. My dr wanted me to do another pulse of DEX and I told him NO. I had just been off the DEX for 2 weeks and my counts were up and I was going to at least wait 2 more weeks. He was NOT happy! He said ok then and told me to come back 2 weeks after I start it. And did not even want to do another count before I start them. SOOOO I am going to my reg DR before I am supposed to start DEX and see where they are. I may not start them then either if my counts are still up. I cannot figure my dr out. I thought the goal is for my count to be above 30000 not normal.

Anyway, I feel like I am my own Dr aside from drawing blood and writing RX I am doing all the research and deciding what to do.

Maybe, another pulse at 98000 is to put me into remission. I do not know and he did not say. I just could not figure out why he wanted to treat at 98000?

Thanks again for all you do!!! We are all lucky to have such a sweet devoted person looking out for us!!!
I don't know you and I love you!!! HA HA HA

Shannon

Shannon:

Wowee! I totally understand the Dex pulse protocol and the reasons behind it (Dex once a month for six months), but I also understand not wanting to treat with higher counts. The fact that you wanted to wait two more weeks is very reasonable, especially given the side effects.

Ha, I love all of you too!

Sandi,
So should I do the DEX pulse even with high counts? Do you do it once a month whether you have low counts or not? How do you know if mybe the first pulse puts you into remission if you are taking them even when your counts are up? Do you wait till they are normal?

I am confused!!!
Shannon

Well, the protocol is once a month for six months, not every two weeks. I don't think I would have started another one having finished one two weeks ago. Your body needs time to recover from that.

I would imagine the protocol pulse would be done even with high counts in order to achieve remission. You really don't know if you're in remission or not if following the protocol until all is said and done. I wouldn't think you are in remission yet since your counts are not yet 'normal'. Supposedly, more patients have had luck with remissions if they follow the entire six month regimen (according to studies).

Those guidelines are not accepted as being the best. The recent international guidelines are regarded by the experts as being better. bloodjournal.hematologylibrary.org/content/115/2/168.full

Hi Anne ,

you said in another post you only get your counts done once a month and you are on romiplostin/nplate do you self inject ? is that allowed ? or do you get your injections weekly at the hospital? sorry this is the wrong post but im not the best with computers

Hi jpb, yes, I self inject every Thursday at home and just go in once every four weeks for a blood test and to collect the drugs for the next four weeks. That is normal in the UK. Of course, they have to be happy that you are able to do the injection yourself and don't need more frequent checks. It's different in the US for some reason although I don't understand why.

Edit to add: If you open the pdf leaflet on this page www.medicines.org.uk/emc/medicine/22772/PIL/nplate%20with%20reconstitution%20pack/ at the bottom of the leaflet it shows the new system for self injecting. Up until last week we had used normal vials, syringes and needles and water and so on but last time they gave us packs with this stuff in it. It is supposed to be easier for patients but I found it more fiddly so won't bother with it all but I suppose that is now the normal way for it to be prescribed to patients.