TOPIC:

Hi
Im Nicki and I have been diagnosed with ITP in November I live in the UK, I started to feel lethargic and had a routine blood test in October where my platelets were 64,000, I had no bleeding or red spots at that time. At the beginning of November I noticed the red spots on my calves and around my breastbone area, and also had some bleeding gums. I went with my Mum to A&E and they did blood tests where my platelets were at 11,000, was given prednisolone at 80 mg a day and two days later was sent home with the steroids to taper off weekly. I am absolutely terrified and cannot function, I am not married and don't have children I am 52 years old, and my mum is 80 and is my only support at the moment as my brother is 350 miles away, and friends are spread all over the place as I recently moved to this area and haven't made friends here as yet, would appreciate any replies and just don't know how to handle this.
Thanks

Hello, I'm in the UK too, in London. ITP is more bothersome than anything else. It really is nothing to get too worked up about. Are you being referred to a haematologist? Ideally you should be seen at one of the ITP centres where the doctors are experienced in treating ITP.

Have a look here and see if any are close enough to you. You can ask you GP to refer you to wherever you want to be seen.
www.ukitpforum.org/index.php/en/itp-clinical-centres

Lots of information on the Support site too. You can join the Association, attend events and learn a lot from them. The more you know the less anxious you will be.
itpsupport.org.uk/index.php/en/

Hi Nicki
I'm also in the UK, in the midlands. I agree with JJ that you would be best seeing an ITP specialist.
Please don't stress out about it. I've been a nurse for years but was well out of my comfort zone when I was first diagnosed. Fortunately I live 15 miles from one of the ITP clinical centres and was sent straight there immediately as soon as my blood test results came back.
The more you learn the easier it will become. You will find a wealth of information digging around on this site.
It is £10 a year to join the ITP association. Unfortunately there is no forum like this one.

HI
Thank you for replying to me, I am with a Haematologist at Maidstone hospital, I live in Kent, the nearest one on the list is Canterbury but my GP said to stick with my current one at the moment I don't know what to do, I am close to a severe breakdown at the moment I cannot get my head around it, not only the diagnosis but the fact I have been needle phobic since a bad experience as a teenager, I am not getting much help from my GP, he said I had to speak to talking therapies, I cannot see how that will help because they probably have never heard of this. I am so frantic with worry that when the steroids stop next week my platelets will go down, and I will be back to square one, they are monitoring them but when I saw the haemotologist on the 17th December the last results he had were on the 6th December, even though I had been on the 13th December. Sorry for going on and I know you both have been through this but this is has hit me for six.

I used to live in Canterbury and was diagnosed there. Dr Gillian Evans there is lovely. They have a system there where you have bloods done just before you see the doctor so they have your result straight away. It's the same where I am now in London but not all hospitals work that way. Trouble is if it's difficult to get there every week as you may have to until stable, then you might be better where you are for now. It is likely that your count will drop when you stop the steroids and then it's important that you don't stay on them for too long. Instead you need to try something else. There are lots of things to try nowadays and you are going to be fine. In the UK, doctors like Mycophenolate and if that doesn't work long term then Revolade, known as Promacta in the States and on this forum, is a good option but expensive so usually left till later.

Talking therapy is good and would help you get things straight in your mind and get things into perspective. Let us know how you are doing.

Nicki
I get my bloods done at my GP's on a Friday then go to the hospital on the following Monday to see the haemo.
When my mum was alive she lived in Maidstone. She saw a kidney specialist at Maidstone but she came from Canterbury to do clinics there. Maybe the haemos do the same.
I agree with JJ about talking therapies for your needle phobia. I used the service several years ago (I won't bore you with the details) but suffice it to say my particular phobia was brought under control with a course of CBT.

I was told about Dr Gillian Evans by the ITP support association, they said she was very good. I get my bloods done at the hospital and they get the results straight away or should be, the Haematology nurse told me that if I went to my GP surgery to get them done they would'nt get them within the hour, I haven't had the results from last Friday, the one before was 287 I am under Dr Banerjee's clinic but did not meet her at my first consultation, it was one of her team. I appreciate all your advice, Im not a very brave person I will admit and you both seem to take it all in your stride, I think on my next consultation if I have energy to get there I will just break down, I don't know what will happen then. I am not working at the moment and I worry I will lose my flat and I have a little dog who knows I am not well I worry I will lose him, its feels so desperate and frightening, I have never been so scared in all my life. I don't know what has caused it, they ruled out a virus and they said that its not cancer, I have been under a lot of stress these last 10 years with my Dad who I lost in 2018 he had cancer and dementia and I looked after him for the last 3 years of his life. I am weary with it all.

Unfortunately it is quite common to not know what causes auto immune diseases.
I know full well that if I am under stress my platelet count drops significantly, so much that I have recently taken early retirement after 46 years as a front line nurse . Working for the NHS had become so stressful over the last year. My health is more important than my job.
If I wanted to have count done on a clinic day I would have to queue up for the test then hang around for at least 2.5 hours before seeing a haemo. Often before I retired I got my count done whilst at work if it was within a couple of days of clinic appointment. I can't say that the difference between sample time and testing time has made much difference to my counts.
My local centre specifically asks patients to go to GP for testing. It's cheaper to reimburse GP practices than it is to employ extra phlebots at the hospital.
If it is the thought of pain from the needle that worries you ask to be prescribed EMLA cream (a local anaesthetic cream) to apply prior to the testing.

JJ / Mrsb04.
Nicki sounds like she has a good steroid response. Isn't Rituxan an option in the UK?

On a related note. I've not found anyone here on PDSA forum, who responded to steroids, that also responded to Mycophenolate, aka MMF. The only folks that have reported responding to MMF here are those that don't respond to steroids and have a strong IVIG response (a row 3 response in my ITP treatments table).