High end infusion

[Shielz]

Hi all

What is high end infusion ?

The doctors have called me into the hospital even though my platelet count is at 64.

Please advise I’m scared

[Lynwoodley]

Hi Shielz my count averages 42 and has been down to 29. I have never had any treatment I am just monitored with my hospital consultant so I wouldn’t worry too much with a count like that good luck

[Shielz in reply to Lynwoodley]

Can I refuse to be treated ? I’m worried that the hospital might be treating me as a guinea pig.

[Lynwoodley in reply to Shielz]

I’m in the UK and they mainly just monitor you here especially above 30 i believe that other countries treat you at different levels. I have had ITP for about 3 years and other than regular blood tests I have not had treatment and would personally refuse it if they said they would treat me but I only get bruises I don’t bleed at all. If I Fel low I just get my blood checked

[Shielz in reply to Lynwoodley]

Ok good to know . I’ve had ITP since 2007 and a relapse in 2012. So I was only treated twice on prednisolone and I was fine. In between I followed up with regular blood test. Since Apr this year my count has been between 40-69. It did go up to 130 last month and dropped last tue to 64. And this week they contacted me to come next Thursday for the infusion

[Lynwoodley in reply to Shielz]

As you know our counts can rapidly fluctuate last month I had to have weekly bloods done as mine dipped to 31 but then went up to 56 back to 41 again now you just have to go with the flow and try not to worry. I think stress is a major factor for mine dropping so I just try to chill out good luck

[Shielz in reply to Lynwoodley]

Thank you Lyn . I’ll keep relaxed. I’ll speak to the hospital before being accepted to be treated.

[JBSS in reply to Shielz]

Hello Shielz: ask your hematologist about the purpose of this high end IVIG infusions. Sometimes they do 3-5 consecutive sessions of IVIG to bring counts up all the way above 300K. Sometimes it just bring a remission

[Shielz in reply to JBSS]

Thanks jbbs I’ll ask them

[hamid_80386]

Hello Shielz

64 is a good count , but your doctor consider more treat because want to increase this count, anyway normal range is 135-450 and your hematologist try to achieve this.

Don't worry, this is only for better treatment

If you new in ITP, this is possible you are under Rituximub injections, this drug weak you anti-bodies to increase you platelets.

Don't worry Don't worry Don't worry, noting

[Kyriak51]

Hi I’ve been on weekly Nplate injections since 2010 (cost $15,000.00 per injection), I received

one IVIG infusion for $20,000.00 and 4 weekly infusions of Rituxan at $10,000.00 each , to me that is “high end injection/infusion “ what does it mean to you? IVIG and Rituxan didn’t work, Nplate works and maintains my count between 30 to 80 thousand with an occasional drop to 10 thousand depending on physical/emotional well-being. Are you aware that illness ( influenza, stress and depression) have a negative on your immune system and will drop your platelets?

How old are you, when were you diagnosed, what treatment regime are you on, what’s you platelet count range? are you being followed by a hematologist? and what country are you in?

How much do you know about our disease? There are many reputable sites available for evidence based information about ITP, its causes and treatment options. Learn as much as you can so you can work with your doctor and participate in the decision making process. The more you know, the better the care you will receive. Be well Georgia

[Shielz in reply to Kyriak51]

And thank you Georgia

[Shielz]

Hello kyriak,

I am now 39 and I live in the uk. I’m originally from Malaysia. I was first diagnosed in 2007 when I was 27. I did not know I had ITP even though I had heavy menstrual bruises pettiache gum bleeding. I went home Malaysia for holidays my conditions got worst as I couldn’t walk. My parents rushed me to hospital. After all the questioning re my symptoms they treated me first by giving platelet and blood transfusion then ivig then they started prednisone. To further confirm it’s not leukaemia they did a bone marrow test. I was in the hospital for 10 days. After discharged I was prednisone fir a year and monitored monthly by the haematology in the uk. I was ok until 2012 I had a relapse as I had menorghia and my GP gave me tranexamic to stop the bleeding as my count was at 5 and referred me to the haematology. At the haematology as after few days I’m on tranexamic my count went up to 30 but it dropped again in a week to 5. I was taken to hospital and treated with prednisone for 6 months. Since then I always monitored my blood until last year July 2017 I started heavy period again and I was given tranexamic but my count was always above 50 and in Jan 2018 I was at 110. In March 2018 I got flu and since then suddenly my platelet dropped to 43 until Jun then it went up to 70 then 130 in jul and last week it dropped to 64. Last tues I met haematology I got my result 64 but she said my platelets are clumped and they have to run test again. In the meantime she told me nothing at the time but that they will write to me of my results. On the same Tuesday I fainted at home under 2 mins , managed to fall on my knees and not hit my head. I felt something was wrong but I thought may be I was tired. And on Friday the hospital called me to say they want to see me next Thursday to do a high end infusion. I think when I get there I’ll ask them the purpose of them doing this. If they are only doing IVIG then I’m ok. But I don’t want to anything else . Esp of my count is high. I don’t my body to be dependent on drugs

[Shielz]

Hi all thank you for replying to me . I’ve my treatment last week. The haematology recommended to do a iron liquid infusion as I was running low hemoglobins and on top of that my iron was very low. In fact a week before the treatment , when I went to get my full blood count done, the same night I fainted at home. Luckily I managed not to bang my head. So far I’m all good. Next FBC again I hope I’ve better results .?