What next?

Hi all, my husband (34yrs, very, very fit and healthy man with the exception of ITP) has had ITP for just over a year and a half. He has tried (in order) prednisolone, Ivig, menthol prednisolone, eltrombopag, romoplostim. None of which has worked. During this time his platelet counts has been as high as 265 and lowest being 2. The most effective drug was romoplostim with an average count of around 165 however eventually his counts went to 5 and stayed there. On 10th may, he had his spleen removed, we done this because nothing else has worked. Since the operation, he has had two blood tests. Day after op (74) and 5 days after op (124). We are now 9 days after op and he thinks his count has crashed because he is showing signs of petechie and blood blisters in his mouth. We will go to hospital on Monday 21st to get checked. The big question is: what now?, what's next?, what if we can't get his counts above 5?

10 Replies

  • Hi clh02 I have been through all the treatment you have had apart from eltombopag. You cant be in England because they will not prescribe it. My splenectomy did not work and my count crashed as well. Have you tried Rituximab? That did not work for me but it is something that is prescribed for ITP patients. Is your husband seeing an ITP specialist? Hang on in there. NickyD

  • Hi NickyD - we live in Scotland. we have not tried Rituximab yet but it is something that they are considering. My husband went into the hospital today and his count is at 8. he is getting steriods over the weekend until we can speak to our own doctor on monday. our doctor isnt an ITP specialist but is a consultant in haematology and seems to be very clued up. in saying that we are going to ask if we could get some time with the ITP specialist based in Glasgow. we have been advised it is early days to tell whether the splanectomy has been successful or not.

  • Hi - there is a website for ITP support and it has a long listing of the drugs that can be used for ITP - itpsupport.org.uk/treatment... check it out. There are lots of things that he can still try - keep me posted. NickyD

  • Hi clh02 im on eltrombo at the moment count went to 28 with 50mg then started to drop so been raised to 75mg go back this thursday im in ayrshire where its haematology team also not ITP specialist i wish you good luck with splenectomy and hope you get to see specialist in glasgow please let us know how you get on kind regards salmagal

  • Hi,

    Indeed, it's early days after splenectomy. I had a relapse few months after I had mine but then was ITP-free for many years till recently! As one biochemist friend of mine explained, it could be that cells that produce antibodies and antibodies themselves could still be present in blood for some time after its source - spleen - was removed. If it's the case, immunoglobulin could help.

    In addition, as NickyD mentioned, rituximab is the next treatment line and there is one more line left if this one doesn't help. ITP specialist would definitely advise on this - there are so many treatments available now. Steroids are the first line but there are two more, with a couple of medicines in each line to choose from. Hope everything will be fine soon!

  • Hi clh02, as you may have already see and heard, every case is different with difficulty in finding similarities as well as success in treatments styles. For the 3rd time around I am back discussing splenectomy which I am very concerned with having it done because once removed there are only other drug theropies as treatment. I have gone through the mega steroid (100mg daily) which I am again back on, 20 transfusions of platelets, 2 rounds of IVIG, and Rituximab. All in the last 12 months. I did have the best success of about 6 months on the Rituximab where counts gone to a year high of 58K, but recently back down to 10K. First I would give the spenectomy a little time and pray that the symptoms are not signs of potential bad counts. If not, talk to your doctor about Rituximab or I have read as well as discussed with my doctors that a common treatment after splenectomy is Nplates. Just what you want are more drugs but unfortunitely we have all become test cases for the ITP SH--. Hang in there and try to be positive, because you have to deal with this life long issue. People find away of dealing with this ITP but you can not let it get to you or your husband. I guess I am not on the supporting spouse side but try to be positive. Good luck!

  • How long did you give romiplostim to work? It took me months and months to get stable on it and keep highering the dose, and then suddenly my count went very high and I had to reduce the dose and have been on a very low dose ever since, but still have the odd drop every now and then. You do need patience with all the drugs.

  • hi CamdenGirl - Romiplostim worked for a good 6mths (counts in the one hundreds) then his body crashed. He was given more than the max for a wee while to see if it can be kick started again but it failed. Glad that it is working for you! :)

  • Hi all, well i think its safe to say the splenectomy didnt work :( since 10th May my husbands counts has pretty much went from 1 to 8 to 1 to 7 to 1, today we are at 1 again. he has been given high amounts of IVIG and steriods which is only giving him 3 days max in helping out getting rid of his blood blisters. he is on MFF (today is his first day on taking the full doseage (given you have to build up the amounts) so the doc wants to give it another 2 weeks to see if it will help. failing that he will be put on Rituximab (protocol of 4 weeks). ill post another little 'blog' soon - hopefully i will be able to share a 'happy' story.

  • MFF.. mycophenolate mofetil? I took that for over a year. It worked while I took it but I had joint pains as a side effect so I stopped it and my counts then fell slowly. It can take 3 months to start working so you need patience.

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