Platelet Disorder Support Association

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New to all this

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8 years 10 months ago #57218 by
New to all this was created by
Hello there! I've just been diagnosed with ITP. My blood platelet level was 1. I didn't know how close to death and ore a massive stroke I was, or indeed that there was anything wrong except for the bleeding gums, nose, haemoraged eye and capillary rash on my legs. I'm now on 70mg prednilosone which is scary. My count has come up to 27, and I was allowed to leave hospital and come home, with weekly visits to a haemotology clinic. I'm actually in N. Ireland, so if anyone here knows where I can get in touch with a UK support organization I would really appreciate that. Thanks.
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8 years 10 months ago #57219 by Rob16
Replied by Rob16 on topic New to all this
Hello, Serena. We have other members from the UK who post here regularly, so I hope you will stick around, but there is a UK support group, though I'm unfamiliar with it:

www.itpsupport.org.uk/
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 10 months ago - 8 years 10 months ago #57225 by mrsb04
Replied by mrsb04 on topic New to all this
Serena, I am in England & in the UK organisation, quite frankly this site is much more up to date and also has an online discussion group .

This is the place to find up to date information regarding treatments, research and the experiences of others , which not only gives you pointers to discuss with your medics but can help you make informed choices regarding you treatment,

This is a good starting point. It contains the current American/European treatment guidelines and is well written by European Nurses for nurses who know nothing about ITP i.e. me when I was diagnosed 2.5 years ago. www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF


There is also www.medicines.org.uk as a good starter to research about various drug treatments.

I think you'll be able to access this cks.nice.org.uk/corticosteroids-oral#!scenario which is definitely worth reading.

Anne
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 10 months ago #57226 by Sandi
Replied by Sandi on topic New to all this
Hi Serena:

I'm glad you found us, you will learn a lot here. Read as much as you can. It will help you to feel more comfortable with treatments and with ITP itself.

Most of us have been where you are now, and we survived it. Death from ITP is very rare. I know it seems very scary, but in time, it won't seem as bad. Remissions are possible too, but it can take time to get there. Prednisone is hard to tolerate; most of us have been there too. We can help you through the side effects. Stick with us.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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