Hi has anyone had levels of 2 for more than 3 weeks? This is whats going on with me and I getting scared. Thanks

[Julie36]

[AnthonyHeard Administrator ITP Support Association]

Hello Julie, my platelet levels were at 4 when I was diagnosed in 2006. I can fully understand how uncertain and worried you must be as I remember feeling exactly like that when I was diagnosed and indeed for some time after. The only symptoms I had were bruises, mainly on my arms, legs and torso. I did not get any bleeding at all nor have I subsequently had any. I was prescribed Prednisolone and my platelet levels responded quite quickly.They went up from 4 to 75 in a week. What is your situation? What medication have you been put on ? What has your specialist suggested so far ?

[Julie36 in reply to AnthonyHeard]

I have replyed by asking a question ( silly me)

[Julie36]

Hi I was given IV Immogloblin but had to stop as had a reaction to this, they cant give me steroids as have stomach ulcers so they started me on Revolade last friday. I am the same as you only bruises and blood spots on skin,however on Monday I developed blood blister in mouth and swollen gums, they bleed for a while after brushing. Hoping platlets are up this week as not liking this feeling of being scared to knock myself or worse bleed. I dont know if its anxiety but I feel whacked and now have a chest infection. It a nightmare to say the least.

[AnthonyHeard Administrator ITP Support Association in reply to Julie36]

Hello Julie, I am really sorry to hear that you are having a rotten time at the moment. I know what you mean about feeling anxious about getting a knock or cut. I remember that when I was first diagnosed I was just so worried and that in itself took me a while to get over. Once my platelets started to respond I felt much better, albeit I ended up having to go on steroids 4 times because each time it was withdrawn my platelet levels fell within a month or so. Eventually in August 2010 I had Rituximab treatment which seems to have worked for me. I really hope that Revolade works for you. Have they mentioned Rituximab? or the new treatment Eltrombopag?

[Jonamack]

Hi Julie

I was diagnosed a long time ago with ITP but my levels where very low and i suffered from bruising by the slightest touch, blood spots and as advanced as bleeding internally and also bleeding out. I was on courses of Steroids to bring my counts up and in the end i had a platelet transfusion. But this was a long time ago and sympthoms are picked up quicker and medication is far more advanced.

I can understand your concerns but there is lots of help out there now and especially with this little group and things might seem scarey but stick with the advice and you'll be on the road to recovery.

Good thoughts are going out to you, i hope everything works out well.

[sailor]

Hi Julie. I have had ITP for around 20 years with counts dropping to 1 on one occassion which resulted in a bad nose bleed. Most of the time, I am around 10 and on rare occassions have been as high as 30 for a short time and for no apparant reason. Symptoms are bruisisng, spots and of course fatigue. The other answers given above are correct. There is plenty of support and advice to boost conficence and coupled with the medications now available, the condition can be managed. I started with steroids which did not work. I subsequently tried other medications and ended up with IVG. I now only have treatment if surgery is required, otherwise I am on the watch and resue course. The answer is, don't let it get you down, keep your pecker up and if you need reassurance, use this medium or call one of the helpers in the ITP suport group.

[Julie36 in reply to sailor]

Thanks all for the great answers, I think this site will help lots

[Julie36]

Well platlets are up to 13 today yeee haaaa. The tablets must be working,however they are now testing me for Lupas? Dont know what that is or why.

[AnthonyHeard Administrator ITP Support Association]

Hello Julie,

If you want to learn more about Lupus, then Lupus UK also have a platform on HealthUnlocked too, so check it out at lupusuk.healthunlocked.com/

Best Wishes

Anthony

[malc]

Hi Julie,

Our son has had ITP for almost 3 years now and his counts have been always under 10 and often between 1 and 4. He was on steroids initially but after an initial boost they stopped working and he has not had any treatment now for 2 years. Apart from bruising, and petechiae, he has little in the way of bleeding so it depends on your symptoms as to what course you take. Glad to hear your count is up though and good luck with it all.

Kind Regards,

Malcolm

[karinsky]

I have a friend who has had that level for years. She is a refractory patient, and no treatment works for her. She has a great attitude, and basically does whatever she wants within reason. She travels a lot. Not to worry. Are you getting treatment.