Does anyone know of anywhere in the U.S. that performs the indium screening test? My hemo says it's officially "not recommended here.

[Catlee]

I had a splenctomy 8 months ago, with no positive results, and now they've discovered an accessory spleen, and want to yank that out too. I've been on various steroids, ivig, rituxan, danazol, and am now approaching the highest dose of nplate, with counts stil hovering at 10 and below, but am not anxious to lose my little spleenette if it's not likely to help.

[kered]

Hi Catlee, The answer to your question from all I have read on the American web sites is probably no. There are many North Americans on the PDSA website who would like to have the indium screening test and at least one went to London. It is done in the UK but does have a doubtful validity and many haematologists discourage their patients from having it done.However it may cut down the odds of a failure. An accessory spleen is probably the reason for the lack of success of the initial splenectomy. Removal of the spleen is a very old method to treat itp and often results in the growth of accessory spleens. You certainly have had lack of success with a several treatments, but with chronic,refractory ITP some treatment either on its own or in combination will work. Have you been down the route of immunosuppressants yet such as mycophenolate morfetil (MMF), or azathioprine (Imuran)?

Good luck especially in finding a treatment to keep your platelets in a safe zone, and in the U.S. at an affordable cost.

[Catlee in reply to kered]

oops, hit the wrong key; I'm concerned about side effects and increased risk of infection, but life without a spleen also presents risks. Have you had success with either?

[Hidden]

Agree. US doesn't like the indium screening test. Probably, and this is my own theory, that it isn't cost effective. It only really shows when a splenectomy is very unlikely to be successful which is only a small percentage of patients. For most it says that a splenectomy may work but is not at all certain.

[Hidden]

Here's the results and splenectomy success rates you might get:

Pure or predominant splenic - 90%+

Mixed hepatic and splenic - 16%

Hepatic (liver) - less than 16%

[Catlee in reply to Hidden]

Thanks very much for the info on the potential success rates. Ahhh, wish I could get this test, but can't afford a trip to London and the expensive procedure. I just hate to give up the little bit of immune protection l still have, not to mention the misery of the surgery, unless there's a good chance of success. This ITP is quite a challenge.

[kered]

Hi Catlee. To answer your question first on splenectomy I was offered a splenectomy ,but in the UK we have to take an antibiotic daily for the rest of our lives( In the USA it is on a need to use antibiotic). I still have my spleen. I had no response to high doses of prednisone,but a quick and immediate positive result of the IVIG infusion. After that I was given MMF(CellCept) increasing the dose to 2g/ day. It took about 4months to work but increased my platelet count from the original 8 to consistently over 100. We are now going to reduce the dose to reduce the immunosuppressive effects and still give a count of about 60 to 70. The object is to get a safe count with the minimum treatment. I am aware of being immunosuppressed and have had shingles,and two common colds and take all the dead vaccines going. Otherwise I have had few side effects from from the MMF but am concerned about the long term use of these drugs which are used daily buy organ transplant patients.p I would like to try a TPO like Nplate (Romiplostim in the UK )where we are allowed to self inject,or try the daily tablet Promacta ( Eltrompaq in the UK ). All of which leads to my agreeing with CamdenGirl about cost effectiveness of a treatment over the long term and in the UK which NHS country you live in and which drug approval committee I. Removal of the spleen is only a treatment which cannot be reversed if it fails to work but other drugs can be stopped and you still have a spleen.

[catherineb]

hi, my little boy suffered from chronic ITP for 3 years after two major bleeds in 2 years ( the latest being xmas day 2012) we decided on a splenectomy it was our only choice, as we had exhausted all other forms of meds!! before surgery the consultants scanned for additional parts to the spleen and told us if all were not removed the chances of success are reduced, Our little boy had additional bits which the scan did not detect but they found during surgery so they were all removed. apparently should part of the spleen remain or a part spills over it can grow back and be back to square one, thankfully in our little boys case at appears to be a success, he is only 6 years old being diagnose shortly after his 3rd birthday and some very difficults days he finally is able to live the life of a normal little boy. for the 3 years prior to his surgery his plalet count sat at 3..... the latest count is 396. he has to take penicilin every morn and evening for life but to live a life its a small price to pay!!!!! Maybe he was one of the lucky ones, i hope for you and all other itp suffers you get the ans and results you wish for. We did request the indium test before the surgery but he was to small!!!! Dr John Grangier in manchester has always been very suportive when we have asked him for guidence, he also is a memebr of the itp association. we live in teh north of ireland and are treated through the RVh belfast. in the past he has had Rituxmab (IV) steriods, immuglobulins, and Eltrompag which were all unsuccessful..... good luck in your journey it surely can be one hell of a journey.

[exxxon]

catlee .. my name is jimmy and recently diagnosed .. prednsione and danazol not working .. on procarta .. 30 / 33 thousand currently .. your 10 and below ??/ how are you doing ??? did you do the spleen screening before removal .. talk to me .. jimmy ..