New to this site. Diagnosed with ITP in June of 2007. Exhausted all of the time. On prednisone but nothing seems to help.

[Denise_]

[sailor]

Hi Denise. Welcome to the site. You will find many of us who all have the condition and who are affected to a greater or lesser extent with the fatigue, bruising, bleeding etc. However, I always try to look on the bright side and this site will provide you I hope, with a great deal of comfort and the feeling of not being alone. From all the comments I have read, feeling alone is probably the most frightening thing. Rest assured you are not and there are many who will be pleaased to communicate and offer comfort.

For myself, I have lived with a count of 10 for the best part of 20 years and am now taking no medication and live as far as is possible a normal life. I attend my local hospital for ANNUAL blood checks but obviously am aware of the dangers and try not to take unnecassary risks. I am fortunate that I do not bleed, but do bruise and suffer fatigue. Apart from being an OAP, I still run my own business, travel from time to time ( middle east before too long on business ) apart from all over the UK and Europe.

This is a funny condition and affects different people in different ways. Do I assume you are not affected by bleeding and what is your count ?

I would urge you to join the ITP Support Group if you are not a member. There is much information and help here for everybody, whatever age, sex and even for carers,schools,dentits etc.

Keep us all informed of your progress and keep you spirits up.

[Hidden]

Have you tried any other medication? There are lots of other things to try than steroids.

[salmagal]

I hope you get some help and comfort from this site there are a lot of us here so please keep in touch I'm on 5th different treatment and seem to be responding to romiplostim there are lots of other treatments

[AnthonyHeard Administrator ITP Support Association]

Hello Denise, sorry to hear that you are having such a horrible time with ITP. I was diagnosed in July 2006 and had 4 years of Prednisolone, Azathioprine none of which worked for me. Eventually in August 2010 I had Rituximab treatment which has given me 2 years in remission and I have not had any further medication since September 2010.

As ITP is such a rare condition you may well find that not all doctors/hospitals/haematologists are complete experts in ITP. Therefore I dont know if you have considered getting a second opinion from a recognised ITP specialist. If you are UK resident you are fully entitled to seek a second opinion and you may wish to consider this. If you email ITP Support Association HQ on [e-mail] they can send you a full list of all the UK ITP Specialists. You would then need to get your existing specialist to refer you or if you prefer you can get your GP to refer you.

I do not know where you are based but there is good coverage of most of the UK on our ITP specialist list, so please do give it your consideration as a second opinion may at the very least give you some new options/thoughts on your treatment. It may of course confirm that what you are already being treated with is the best course of action but that in itself may give you some peace of mind.

Hope this helps, but do let us know how you get on,

[NickyD]

Hi Denise - Like Salmagal I too have tried different treatments - steroids being only one of them. I am on my sixth treatment and going through the "suck it and see if this one works"

cycle. I get very tired and often have to lie down for a rest. You are not alone and as Sailor and Anthony say - we are all so different. Unfortunately when you are on the steroids they will try different doses over different time frames, so it can take months before you find that the steroid treatment does not work. I have blood tests twice a week and am not so fortunate as Sailor who goes once a year. You are not alone and trust me when I say we know what you are going through, honestly we have been there! Nicky

[Denise_]

Hello again everyone. Thank you for your kind words of support. I had seen an ITP specialist and my last count was at 68 which is good considering it was was down to 33. The Hematologist has been wanting me to have a Spinal to check the fluid but I have been stalling on that. I know that my spleen is enlarged and that I am producing platelets but my immune system is fighting them off, so needless to say my immune system is completely shot. The bleeding, bruises and fatigue are the worst part, well for me anyway. Am going to see if I can try something else as the prednisone feels like it's slowly killing me. Btw I live here in the US