Has anyone had a splenectomy and does it work? I have IVIG every 4 weeks to keep my count up I also have ME (chronic fatigue syndrome).

[sgreenhalgh]

[sailor]

Hi SG. The short answer is it works in some people and not others. There are no gaurantees. There is however a test which can be perfomed to determine if the spleen is the culprit for destroying the platelets. There have been some bloggs on this over the last couple of weeks and I suggest you look back through these as they will provide a lot of information and help. Unfortunatley, there are not that many hospitals that undertake this test but the ITP Support Group will be able to provide you with the addresses of those that do.

In respect of fatigue, that is also common in ITP sufferers. It affects us all, some more than others.

How long have you had ITP: what is your count now prior to IVG; do you bleed spontaniously; which part of the country do you live and which hospital do you attend?

If you can answer these questions, we may be able to shed a bit more light.

I have had ITP for the best part of 20 years with an average count of 10. I take no medication and refused to have my spleen out as I did not want to take antibiotics for the rest of my life.

Keep in touch.

[sgreenhalgh in reply to sailor]

Hi I have had ITP for nearly 2 years and I live in Lancashire and attend Preston and Chorley Hospital. My count went down to 4 in March this year that's why my consultant put me on IVG. I am booked in on 17/9/12 at Manchester Royal Hospital for the Indium Platelet Scan. I just want to get back to normal and feel well. I find that when I have the ivg and my count goes up i feel ok for about a week and then they crash and i feel terrible. I have had no bleeding even when my count was 4. My consultant says that it is my immune system that is destroying the platelets. I was on steriods last summer and they went up but soon as i came off they went crashing down. I have been on steriods for the last 2 weeks because i cannot have the ivg until i have the scan. I just want to lead a normal life.

[NickyD]

HI sgreenhalgh - I have had my spleen removed and it has made no difference to my ITP. If I had known about the indium scan I would have had it straight away. There may be a problem with you having IVIG and the scan - so you will have to ask. I take antibiotics every day. It is not a great hardship but I do not like the dependence on drugs that I now have and did not have to have.

Do what Sailor says and go to the ITP support group for more information.

NickyD

[rjsmyth]

I was sent by my Hematologist for a consultation with Dr Drew Provan - Senior Lecturer in Hematology at the London Hospital. He told me what I already thought and that was not to have my spleen out voluntarily under any circumstances. Also he no longer did the Indium test as he thought and to pressurise my PCT into giving me Nplate as the NICE guidelines had changed to you now only needing to have failed one treatment.

Taking your spleen out will compromise your immune system and you will be on antibiotics for life - now if you had been involved in an accident and had to have it removed - fair enough - but to voluntarily remove it - I don't think so.

The success rate is initially about 60% although it is possible that the liver may take over the spleens activities and it is possible that you may grow a secondary spleen. The desire to give you a splenectomy and all the other invasive treatments we are made to suffer - steroids - anti-rejection drugs etc I believe is driven purely by cost - it is a lot cheaper than having someone on Nplate for the rest of their lives. Nplate costs the NHS approx £500 per injection - although I believe they do get some of this money back from the drug manufacturer.

I recently started Nplate (currently self injecting at home once a fortnight) - it has been very successful so far, although I have to say I know when I am due the next injection as I become fatigued again.

For me fatigue has been the worst aspect of ITP and should be better recognised by all Hematologists - at the moment it is not. The level of fatigue should to my mind should be acknowledged as a disability. I get so tired I often feel I cannot stand up and have to sit down!!

nplate.com/

The list of side effects is spectacular - I have fortunately not suffered from any of them. Mind you the list of side effects for all the other treatments I have been given on my ITP journey have been equally spectacular.

[janran]

Hi

I was only diagnosed with ITP in October, so I was quite surprised when it was suggested that I should have a splenectomy as the best course of action. Like yourself I was not sure that this was my best option. However, I was lucky enough to be offered the indium scan at Derriford Hospital in Plymouth and It turned out that I am not a suitable candidate for a splenectomy anyway as both my liver and my spleen are involved in the destruction of my platelets. I was really glad that I avoided having my spleen removed unecessarily. I would recomend that you ask about this test before agreeing to removal of your spleen. Unfortunately the test requires daily visits to hospital over a period of nine days (not at the weekend) and you also need a reasonable count (over 40 I think) in order for it to work. I was dreading having it done but it was fine, had no problems with it at all.

Janet

[sgreenhalgh in reply to janran]

Are you on any other treatment>

[janran in reply to sgreenhalgh]

Coming off steroids at the moment. I have been taking them since begininng of June when my count crashed to 5. I am taking 5mg a day was on 60mg at the beginning. My count is really good at the moment 340ish and I am keeping my fingers crossed that it stays that way so that I can get off them for as long as possible.

[Hidden]

What other treatments have you tried? IVIG is only ever temporary.

[sailor]

Hi SG. Well you have received a bundle of very positive advice from regulars to this site. I am sure we wish you well with the test in Manchester.

The IVG is only a tempory remedy and I found time between treatments diminished over a period until I was on weekly infusions. It was after being on weekly visits that I was taken off treatment completely ( unless I needed the count raising ) and have never looked back.

I think it fair to say, that no drug will cure you completely, only reduce the symptoms, until such time as the body goes into remission. This may be a short period of time, or never. Very often ITP is a result of a virus and until that is cleared from your system and the immune system recovers and stops regarding platelets as the enemy, there is not a great deal that can be done.

At manchester is Dr J.Thachil, a specialist in ITP and you may consider seeking a second opinion from him after your test. This would need to be arranged through your GP.

Good luck on the 17th and keep us all posted.

[sgreenhalgh in reply to sailor]

Thank you Sailor.

I will let you know how I go on.

Sonia

[Queenie72]

Hi , I had my spleen removed in April 2006 by then I was a chronic ITP sufferer ranging from 2 - to the mid 30's. I have had ITP for 17 years and I was on steriods 6-9 months of each year and quite frankly had enough. I spoke with my Consultant and Doctors and family and like I said had the spleen removed in 2006. I had another condition from birth which is very very rare so when I had the operation I was the subject of countless doctors and specialists to see how I would react. Up until January this year I was ITP free but since then it has returned 4 times and always following a cold, I strongly believe when I have a cold / flu my platelets drop and having the condition for so long I know it so well. I do not regret having my spleen removed as I have 6 magnificent free years, but it is a decision not to be taken lightly and with my other condition it was suggested the best route for me. Good luck

[sgreenhalgh in reply to Queenie72]

Thank you Queenie.

Sonia

[Drmurli]

I am treating a patient successfully after failure of splenectomy done recently.

She is responding very well.

You may contact me on suvidhaa.org

Dr murali

[trev1679 in reply to Drmurli]

Fraud, take your snake oil elsewhere