ITP – Need more options

[ITP_September_2014]

In September 2014 I was diagnosed with ITP. I found out due to a cold and routine check up. I have tried, Prednisone, IVIG, Rituxan, MMF, Nplate and a few others I can't think of at the moment. The only drug that seems to work is Nplate although the weekly Dr visit are not fun.

Without drugs my count is usually 4-17.

My new goal is to get the splenectomy. Next month I plan to travel to the UK to receive the spleen scan. My Dr doesn't seem to think the splenectomy will work for me but I'm going to get the scan done anyway. Im nervous that I'm running out of options.

[Robert1959]

Although I still have my spleen, many on this forum who have had their spleen removed have said that, while it may have worked initially, their ITP returned and so they ended up being worse off as they we more susceptible to infections - remember that once it has been removed it is gone forever.

How long have you now been on NPlate and have you settled into a standard dosage level (mcg/kg) as yet? I too had been given many treatments (Prednisone, IVIG, Rituxan, Dapsone, Cyclosporine, Dexamethasone and Tranexamic Acid) before starting on NPlate which was a great success for me and put me into remission after 5 months but it was a real roller coaster of platelet levels over this time.

I understand that with all the new treatments now available (although you have already tried most of them) the removal of the spleen is not considered a suitable option as it once was however I do appreciate your frustration with this illness.

Robert

[ITP_September_2014 in reply to Robert1959]

Thats what I'm nervous about, having my spleen removed and causing myself a bigger issue.

My dosage on Nplate is 250. Are you fine with making weekly dr visits to receive nplate?

How long have you had ITP?

[holcotts]

Can you try anti d? Only have to go to hospital every coulple of months? Leaves me bit headachy for a few days though. How does the Nplate affect you?

[ITP_September_2014 in reply to holcotts]

I haven't heard of anti d. I'll check in with my dr to ask about this.

Nplate works for me but if i'm not on it for a week and a half my count drops right back down. Also, i have to make weekly dr visits with Nplate.

[ITP_September_2014 in reply to ITP_September_2014]

Once I hit a week and a half without nplate my platelets drop as well. if i go over two weeks i'm right back down to a count of 5.

[Robert1959 in reply to ITP_September_2014]

Yes this is the NPlate roller coaster which I remember very well.

I am not sure how your count is varying and what dose of NPlate (in mcg/kg) your are receiving but I experienced the same fluctuations.

I know the NPlate guidelines state to find a dose that would maintain a stable count of 50 but for me this was very hard to do as even a low 2mcg/kg dose would have a big effect. In the early months my count was all over the place as they tried to find a suitable dose as initially my body wasn't reacting to it - the maximum amount of NPlate you are allowed is a 10mcg/kg dose and the highest I received was 8mcg/kg which resulted in a count of 1,084.

Once I started to react, my platelet count would drop 100-200 per week and I would be given a small 2mcg/kg dose at 150 which would take me from 150 up to 400 and then the next week (without a dose) I would continue to climb to 600 (I always found that the full effect of a dose came 2 weeks after it was injected). I would then skip the weekly doses and start to drop back down again to 400, 250, 150 where I would have a dose and go back up to 600 to start the same cycle.

This cycle went on for a few months until suddenly 1 week my body just stopped destroying platelets and life returned to normal. I wish I could tell everyone a reason why this happened but I have no idea as I didn't do anything differently. All up I was on NPlate for 5 months.

I believe that the drug manufacturer Amgen is finding this happening to many patients on NPlate so, while there are not any guarantees, I hope that the same can happen to you

[ITP_September_2014 in reply to Robert1959]

This message has given me a lot of hope. I never heard of Nplate doing this.

I was feeling really down last week because my latest treatment of MMF and Rituxan has failed.

[falanw]

I had my spleen remove when I was 10 and it's still hasn't gone away taking your spleen out only results into getting sick around sick ppl trust me I have no spkeen it sucks you can catch anything cause you have no immune system