Newly diagnosed with ITP

[Chelley075]

Hi, I was admitted to hospital 3 weeks ago with platlet count of 6.. And had 4 rounds of transfusions and an iron infusion..

I was quite shocked and upset.. Would love to chat to get others opinions and coping mechanisms as I'm quite stressed over it all..

I am on 50mg prednisone and platlets are dropping steadily.. Dr is now talking of 2nd line treatments and possible splenectomy.. Any advice I would be greatful to get..

Regards

Chelley

[Robert1959]

Chelley,

Welcome to the forum where you will find that we have all been where you are now and as such will be able to help you through your time with ITP.

The first thing to do is to remain calm as this condition can be either defeated (remission) or controlled and it is generally not considered life-threatening.

Unfortunately it is common for your platelet count to drop once you start reducing your Prednisone dose as this is often just an initial rescue treatment. You will then be offered a range of other second line treatments of which there are many available and it will just be a case of finding one that works for you. The drawback is that this process can take many months (in my case 9 months) to find the right one but you should not consider a splenectomy until all other treatment options are exhausted and even then think long and hard about it as it is not reversible.

The next treatment you may be given is called IVIG which is a daily transfusion over 5 days and if that doesn't work then on to Rituximab (another transfusion given 1 day a week for 4 weeks). My saviour was NPlate (Romiplostim) because it was the only one that worked but it is very expensive. There are a few others as well so I would suggest you do some homework on either the ITPSupport or PDSA websites to see what is available and what the various side-effects are.

Good luck with it all and keep us informed on your progress.

Robert

[sailor]

Chelley,

Roberts has given you the best and correct advice. It is a trial to find out if the meds prescribed work for you. If not move on and try something else. All the ITP specialist would agree a splenectomy is the last resort and there are no guarantees that will work either in the short term or the long term.

I have lived for 10 years with a count of 10 very happily. I did not bleed which was a blessing. I refused point blank to have my spleen removed. After a heart bypass when my count was boosted to just over 100 with eltrombopag, I was taken off the drug immediately after the operation, but since then my count has slowly risen to 70 for no reason that I am aware. This happens in around 30% of cases when patients have been on Nplate or eltrombopag.

Take heart, do as Robert has said and get on with your life and finally. If you are unsure of your treatment being correct, you can always ask your GP to refer you to an ITP specialist for a second opinion. On the ITP web site look under forum for a list of ITP specialist centres around the country to find one near you.

[takari]

There are 2 support groups on facebook, I would get on those for support. One is purple people and the other is through the PDSA

[Chelley075 in reply to takari]

Thanks takari, I've now joined the purple people Facebook page

[Chelley075]

Feeling nervous about my platlet count test tomorrow after the dr lowered my prednisone to 40mg..

Do the platlet levels normally drop when the dosage is lowered?

Also does anyone else find they get pains all over?

I had such a bad sleep last night and kept waking up with random pains and waking up feeling very unwell with wheeze and cough, sore throat.. Hope I'm not getting sick or that this is an indication that my platlets have dropped low again??

Eager to hear others experiences

[Robert1959 in reply to Chelley075]

For some their count can drop, for others it doesn't. My count dropped as in the end Prednisone didn't work for me.

I never had any of the symptoms you mentioned when I was on it or when my platelets were low.

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I'm not parting with my spleen This might be of use ebmt.org/Contents/Resources...