Does anyone know a doctor who specialises in ITP. I live in the Greater Manchester Area.

[mags4743]

[sailor]

Hi Mags. If you want a specialist and not a GP, speak to the haemotology dept at Manchester Royal Infirmary if it is for yourself. I am assuming you are an adult. If you are asking for a sibbling, then Dr John Grainger at Manchester Royal Infirmary is the pediatric haematologist with a special interest and knowledge of ITP.

[mags4743]

Thank you sailor. I am very much an adult! I have been under the care of a haemotologist at MRI since November last year and sorry not impressed. I was put on a high dose (50mg daily) of prednisolone. After the first week my platelets rose from 16 to 230. Second week they dropped to 61 and have been dropping ever since. Platelets now at 20. After 3 months of taking prednisolone (and still taking) I feel I am going nowhere, In fact I have wasted 3 months. I asked the haemotolist my options. She gave me 4 - 2 of which were tablets, 1 immunoglobulin and the fourt do nothing. Then she completely backtracked, said I couldn't have immunoglobulin and couldn't do nothing! I will, however, phone MRI as you suggest.

THANK YOU.

M

[NickyD]

Hi Mags

I think I can join you on the rollercoaster. I have been on many courses of prednisolone the longest was for 100 days and the highest dose was 80mg. My consultants have tried different doses over different periods, You have just successfully found a course of treatment that does not work for you. In the last six months I have been off steroids for only a few days. Something will work for you.

My consultants have been working on trying to find the right combination of Romiplostim and Prednisolone. We have been working on different combinations since 4th October which is only 5 months. Before that there were other treatments that did not work.

Hang on in there Mags.

NickyD

[sailor]

Hi Mags. Sorry to read the problems that you have had to date.

I think you will have gathered from reading the questions posted, the consultants go down a set route of medications to see which one suits the patient as different people react in different ways to the medications used.

I know it may seem a waste of time, but hopefully not, and you will find a medication that works and agrees with you.

I have been on many different medications and ended up with Ivig. This worked but only for a short time until eventually, I was put on watch and rescue with a platelet count of 10. There it has remained for 10 years and I have only had medication (Ivig) when having an operation.

The only advice I can give is be patient, positive and go with the medical advice given. However, do ask if your consultant is a specialist in ITP and do not be afraid to ask for a second opinion if you feel you are not advancing.

Have you asked her if you would be suitable for Romiplostin which is a new drug.

Keep us informed.

[mags4743]

Thank you Nicky & Sailor for your response. I am a Type 1 diabetic and prednisolone does increase my blood sugars. It was obvious after 3 weeks that prednisolone wasn't working for me and had I been taken off them then, I wouldn't have had to be weened off 3 months later. The haematologist hasn't mentioned Romiiplostin (probably because it is expensive) all she mentioned was cyclosporine (side effects - make you hairy and can raise blood pressure which I already have) the other tablet mentioned can damage your kidneys and both can cause certain cancers with prolonged use.

That is my point I need to know ALL my options and I feel I am not being given that. info. I am sure something will work for me - I just need to know what it is. Sailor I don't know what Ivig is?

Thank you both so much for responding. It is nice to know that you can "talk" to people who understand.

Thanks again

Mags

[Howard_Anderson]

Hello Mags

We have just started a new website in conjunction with the ITP Registry. If you look at ukitpregistry.com/itpforum/..., there is a list of UK doctors specialising in ITP. Sailor mentioned John Grainger, he is on the list and often speaks at our Conventions (itpsupport.org.uk/conventio...

Regards

Howard

ITP Website manager

[mags4743]

Wow! Thank you so much this is really useful.

Do you know what the procedure would be for me to see the specialist at Sheffield via the NHS. Would I have to get a referral from my GP?

Many thanks

Mags

[sailor]

Hi Mags. It sounds as though Howard has hit the spot and you are making progress.

Ivig is immunogoblin which is administered by infusion. Like evry medication, it too has it's side effects most noticeable is headache whilst being administered and sometimes afterwards. I used to have it regularly but now only when I need to have my count boosted above 50. The last time also caused my hands and feet to itch during the infusion over 2 days and then them turn red and peel. You have to see the funny side but it was not that pleasant at the time.

Good luck with the new web site, I am going to have a look at it now.

Regards,

Sailor.

[mags4743]

Thanks Sailor - Good job you have a sense of humour eh?

Best regards

Mags