Does anyone have any good news?

[technogeek]

Even the remission news for ITP is only temporary. Can anyone say it was cured? And how did that happen? I am not a fan of any solution removing organs god intended us to have for any reason and expecially when that would cause even more bad conditions. Some people think there is a bacterial connection but what bothers me the most is the lack of deeper research into the cause at a molecular level.

[Robert1959]

Since my ITP suddenly stopped 3.5 years ago and life returned back to normal with a count of over 200 and no medications at all, I consider myself cured rather than in remission and so I would like to consider mine a story that may give hope to others with this illness.

[technogeek in reply to Robert1959]

Thanks for your response Robert1959. Please tell us more. Can you elaborate your actions, treatments if any and what your were doing at the time and prior to when your platelets were normal 3.5 years ago?

[Robert1959 in reply to technogeek]

In a nutshell, I was a healthy 54 year old male when I was diagnosed with ITP in Feb 2014 (count 9).

Over a 9 month period I was given the following treatments: Prednisone, IVIG, Dapsone, Tranexamic Acid, Rituximab, Cyclosporine, Dexmethasone and finally Romiplostim (NPlate) before my system returned to normal in Oct 2014.

My lowest count was 0 and my highest 1,048 (on NPlate).

I really wish I could offer some advice but I have no idea as to why it started and, apart from the treatments I received, I did nothing at all to make it stop - it just did it of its own accord.

[technogeek in reply to Robert1959]

Thanks for the detail Robert. So maybe the NPlate did the trick

[peggyabrams in reply to Robert1959]

Hi

I haven't checked in for a while but having read the line 'is there any hope?' I thought ,like Robert, my ITP story might offer some hope to others who have this illness.

I was diagnosed with ITP in June 2016. I was a healthy 55 year old female, I was at a conference and I noticed a rash developing on my feet. I now know that this was petechaie, at the time I though it was a heat rash. My symptoms rapidly developed: severe bruising, mouth blisters, bleeding gums and a platelet count of one. This quickly dropped to zero during hospital admission. My initial treatment was IVG and massive doses of Prednisone which was slowly and carefully tapered. I have been medication free now for 16 months and my platelets have remained well above 200. In fact my last blood test was on Tuesday and my count was 278. Unlike Robert I don't consider myself cured (although I might 3.5 years down the line). Reading so many personal experiences I am well aware that my ITP may return. I am what one commentator below describes as 'cautiously optimistic!'

[CDmom]

Hi,

I am cautiously optimistic with my last IVIG in October 2017. Still on 25mg Promacta 3 times a week and homeopathics.

I was diagnosed April 14, 2017 - 2 weeks after a trip to Costa Rica (probably caught something there) at 56 y/o. I was initially on high dose Prednisone on then on an every 2 week IVIG infusion and dexamethasone bursts for months!!! Just a bandaid. Platelets over 1,000,000 and as low as 1,000. In Sept, I did two Rife treatments to kill paracites and I took a parasite killer type medicine from the vitamin store for 2 weeks I started homeopathics in September 2017 which included immuno-regulators, skate liver oil- a bone marrow platelet stimulator and anti fungal, viral and bacterial homeopathics. Went gluten free in Oct 2017. I also took low dose Prdnisone (20mg for a few days and wean down over 2 weeksish) in Oct 2017 because someone suggested that might stop my IVIG horrible 2 week cycle and it seemed to.

I also think not being stressed is very important for me.

Sending you and us all good thoughts!

[technogeek]

Thank you too CDmom for your story. Thanks for the good thoughts

[ITP_September_2014]

I just wrote a post about Tamiflu. Ive tried everything and failed!! and this seems to be working for me... I'm sure i'll need to keep taking medication but i have hope for this one.

[aprilskies]

Hi Technogeek, I was diagnosed with Itp in May 2014 with a count of 4. Took prednisalone for a year which successfully raised platelet levels. I tried gradually stopped taking prednisalone, but platelet levels went back down. One of consultants I saw wanted to remove spleen, but the others said that was rarely done these days, I didn’t want it removed anyway as it wouldn’t necessary cure the Itp and would involve further complications.

In March 2016 I had 4 weekly doses of rituximab. My platelet levels gradually rose and have stayed high ever since. I had a blood test this week and my platelet count was 297! Maybe I am just one of the lucky ones, hopefully they will continue to stay high. One of the consultants told me if your levels can stay high for 2 years after rituximab treatment it is likely that they will stay that way. I certainly hope so! Wishing you all the best 😀☀️

[technogeek]

Thank you Aprilskies. I have had 3 rounds of Rituxan so far and I chronically loose platelets after 7 months. I am glad your situation is much better. Thank you for your words.