ukadultitpregistry.com

[Corran]

My consultant at Edinburgh's Royal Infirmary is saying that I need my spleen out!!
I was diagnosed in Sept 2006 with ITP, treated with steroids from May 2007 to Dec 2007, had rituximab Nov 2007 and am currently being treated with Win Rho and have been since Nov 2008.
The Win Rho is now no longer working (my counts were 28, had treatment, upto 114, more treatment, dropped to 70. Now the Doc is saying he thinks the next best option is to take my spleen out.
Personally I don't think this is wise as I am allergic to most antibiotics, inc penicillin. I don't understand why they don't use the rituximab again as it seemed to work - if only for a year. I have refused the opp until I have at least had the chance to try the new treatment coming out in July.
Has anyone got any thoughts? Information? Or advice?
any responses greatly appreciated
xx

[barneypup]

Hi,

Just spotted your reply on the PDSA website, sorry for not replying sooner. Maybe try and get referred for the Platelet Survival Test at the Barts and London, Im going in a couple of weeks, at least this way you will know exactly whats going on inside and would help with the decision if a splenectomy is a viable option.

Im at Crosshouse Hospital in Ayrshire (West Coast) consultants are very good and will listen to you.

[Corran]

thx for the advice, think i'm going to try and get referred to manchester, my folks have been on the phone to people at the ITP support group and they suggested it.
Looking forward to the conference in Edinburgh in May tho. It'll be great to meet other people with the same condition.
good luck with your appointment in a few weeks
corran x

[barneypup]

Hi,

When and where is the conference?

[Ann]

http://www.itpsupport.org.uk/convention.htm

Shame I won't be able to go this time. Went to the last one in London and found it very good.

[clare]

Hi Corran

I had a splenectomy last July after a year of different treatments; steroids, anti d, IVIG (on weekly basis) none of which worked, count fell to 15-20 a few days after treatment. I really didn't want the surgery as it seemed so radical and the fact that i have always been asymptomatic (besides blood count) didn't help.
In the end i got so fed up of going to the hospital 2 days every week for treatment i agreed to the surgery.
Anyway it was the best decision i've made i now have a normal count of 300+. The surgery was done by keyhole so gave minimal scarring and was only in hospital for 3 days. The antibiotics are a nuisance but compared to the previous treatments they are nothing.
Anyway i was so against it when the consultant first told me, but if anything i regret not having it done sooner.
Hope this helps, take care

Clare

[Ann]

I wouldn't comtemplate a splenectomy without the indium survival study. Luckily my haematologist was of the same mind and referred me to London for the test. It showed that I mostly kill off my platelets in my liver so a splenectomy would not work for me. I am so glad I had the test.

[Ramsey]

Hi all,

Aint been around for a while, but just read up on this. I too have again had splenectomy brought back up. I'm struggling for treatments to try before i give in to having the operation. As most of us know, eltrombopag and romiplostin have now been pushed back in terms of their release.

I have been through the following and wondered if people knew of any other alternate medicines i could try:

Predniserone (spelling!)
Immunoglobulins
Rituximab
Win Rho
Platelet Transfusions

My latest treatments have been Win Rho which we initially thought was doing the job and maintaining my count. But now it seems its not having the desired effect and my count wont go above 16, its currently about 4.

Any suggestions would be great

Adam

P.S I understand there may be a iodine (perhaps?) test that can help determine if it is the spleen that may be killing the platelets off, does someone know about this too?

[Ann]

Yes, the indium platelet survival study. It's explained here..

http://www.virrad.eu.org/public/Indium.html

As I said in the post above, I had it done in London last September and it showed that a splenectomy would be no good for me.

[Ramsey]

Thanks for that Ann,

I just need to find out now whether i need to go to London for it, i believe there may be sessions in Manchester but i'm not sure.

Has anyone tried Mycophenalate?

[Ramsey]

As i said previously, i found manchester does the test, but my counts were so slow they couldnt do anything. Frustrating as my doctor never said i needed x amounts of platelets before the test could be done, if i had known i'd have had a top up of treatment before i went!

[JenSL]

It would be worth asking for a referral to Barts and Drew's team first. I think many haematologist send people who are refractory to Barts

[Rhiannon]

I will add my experience

Yes I had a splenectomy in 1994 and everything cleared up or so we thought. In 1997 Idiopathic Thrombocytopenia Purpula returned and on investigation they found my spleen had regrown. This can happen if a tiny piece is left behind. They removed that.
For some years ITP continued to happen. But then it stopped. I haven't had any for years. I still visit the heamatology department basically becaause my cause is unknown and could reappear.
There are risks with having a splenectomy but I will not frighten you because they do not happen to everyone. Apart of my health problems were due to lack of GP communication once I had left childhood practice. Am now back at my childhood practice so hopefully no more severe illnesses through lack of reading patient notes etc.
Personally if your platelet level had not risen above 20 any time then opt for the splenectomy. Y