I’m worried about my relapse for the second time

[Shielz]

Hi all,

I was diagnosed with ITP in 2007, as I was at the worst stage than with platelet count of 5, I was given both blood & platelet transfusion, IVIG for 10 days followed by course of prednisolone for a year. I then had a relapse in 2012, sudden heavy bleeding during my period and my platelet count dropped to 15. They gave me tranexamic tablets to control the bleeding but the doctors here did nothing after as my platelet count went up to 30, they just let me go. I was lucky enough that I was going home to Malaysia, but my condition got worst and the hospital there treated me immediately and gave another course of prednisolone for 6 months. I was monitored by haematologist in the UK for one of year and a half and I was discharged as my platelet count stabilised , my count then was around 150. In the last few years it’s gradually dropped. Last year 2017, I was cautious as I was worried of my 5 year remission period may be over. Sometime around July to Sep I had extremely heavy period. As I moved to a new address , my GP has changed. I told them to refer me to a haematologist. But instead they gave me tranexamic to stop heavy period bleeding and got me to a FBC. My platelet count in August was 86. They said they not going to refer to a haematologist as the count is above 50. In Oct it went up to 120. I checked last month as in April I had 2 massive haematomas on my arm and thigh, my platelet count is now 43. The GP now has referred me to a haematologist and I’m yet to see him. My question is should i be worried ? Are they going treat me with steroids again? I live on my own , is there any precautions I need to take ? As the last few times, I was lucky enough to have some one around me. Sometime I’m scared what if I don’t wake up ? Any advise would be helpful. Thank you

[Kyriak51]

You will wake up! My platelets have been 14K to 48K for the past several months with weekly Nplate injections and am able to live a fairly active lifestyle. As you know there is no cure at this time only management you should be seen by a hematologist not a GP! This site has great educational materials on treatment options, check it out. Try not to worry as this will have a negative impact on your counts. Be well Georgia

[Shielz in reply to Kyriak51]

Thank you

[Alrx_MC]

Live in a day. I had 1.5 when i first discovered to have ITP wayback Nov 2014. 3 months in hospital until Jan 2016 (with some blood clot in the brain). Fast forward, still here 😊. With weekly Nplate and at present in more than 100. Be happy .. be positive.

[Lynwoodley]

I have an average count of 42. I have never been given any medication and don’t have to see my haematologist unless it’s under 30. I don’t bleed but bruise especially if the count is under 50. I have s blood test once a month unless I feel bad then I take a test to check if it’s gone down. I have had ITP for about 2.5 years now

[ShirleyJK in reply to Lynwoodley]

Hello, when you say "feel bad" what specifically do you mean. I was diagnosed the beginning of this month but felt fine - had bruising and red dots which sent me to doctor out of concern. I felt fine but now have high anxiety just wondering what is going to happen. After treatment I am in high normal range but they said blood tests every week. I am otherwise healthy and wasn't taking any other medication. A car accident 4 years ago changed that and I'm trying to wean off pain meds. It doesn't help. Thanks.

Shirley

[Lynwoodley in reply to ShirleyJK]

Sometimes I feel drained, tired and ache more than usual. So I just have an extra blood test to make sure it’s not really low. You do get used to having ITP after the initial period of feeling scared. You just have to try and get on with your life, I find that stress makes it worse. I take a cocktail of vitamins tablets ect. daily, selenium, folic acid, multi vitamin, vitamin C, black seed oil, olive extract and papaya. Since taking these about 18 months I have not even had a cold. I don’t know if it’s because I take them or not but will carry on in case they help. This site is amazing if you feel worried it has really helped me as we have a network of help and however you feel somebody on here has had it so you are not alone. Good luck x