Husband has itp. 2 months , 3 different treatments, 4 day super dose of steroids, failed. Globulin treatment one week , got up to 60000 platlets, stopped treatment , platlets crashed , now doing 4th treatment of a 4 week treatment of Rituxin... everywhere drops below 10000.. last week had a change in white cells and platlets did not drop over weekend, but by this Friday crashed to 5000. Doing last rituxin , just for the hell of it , I guess. Spleenectamy is next. Not feeling like we have tried enough. Anyone have any suggestions. I am currently waiting on a call from his Dr so I can ask more questions. We have not been looking elsewhere for answers for this because Dr seemed so positive about each treatment. Now I am feeling strung along.

12 Replies

  • There are other treatments to try before surgery. Has he tried NPlate or Promacta?

  • Your husband is going down the same path as I did. Over the 4 months after diagnosis I was given 7 different treatments including the ones that you mentioned but all to no affect as I went down to 0 and had the prospect of a splenectomy looming.

    I then started on NPlate (Romiplostim) which thankfully worked and after a further 5 months of fluctuating counts I went into remission. NPlate (there is also Promacta which I did not have) stimulates the bone marrow to make more platelets than can be destroyed and is a very small injection given each week that is varied to suit your platelet count. The only drawback with these treatments is that they are very expensive ($3,000.00 for a 1.5ml injection each week) which was thankfully covered by our health care system.

    You should discuss these treatments (called TPO's) before agreeing to a splenectomy. I was also told that you should not consider an operation with such a low platelet count due to the bleeding risk involved and a minimum platelet count of 50,000 is required.

  • There is no point in a splenectomy unless the docs are sure that the platelets are being destroyed in the spleen and not the liver. There is an Indium test that can be done to ascertain this.

  • agree mostly doc. dont know wether its spleen or liver

  • Hi There. All the above are good sound advice. If you live in the UK you could always have a second opinion from an expert in ITP. This condition is classed as a rare blood condition but the ITP Support Association instigated centers of excellence around the UK. Details are available on their web site under Forum.

    Splenectomy is the old fashioned treatment which has a low success rate and in my view, and that of many experts in ITP, should be avoided if at all possible.

    Look at the web site and join the Association, and don't worry you are not alone. Those of us that have ITP have lived very well with it when the medication that suits you is found.

    Good luck

  • Having had Rituximab (UK) / Rituxan (USA) twice I can confirm that it does take a while to impact on the platelet count. It can take anything up to 3 months so don't be too down hearted if it has not had any positive impact yet. I had Rituximab in 2010 and got 2 and a half years remission from it then had it again in 2013 and again got 2 and a half years remission. Have not gone for it a third time as it can have nasty long term side effects. Have gone for Mycophenolate (MMF) this time and since April when I started it platelets have been behaving well. With Mychophenolate it also takes about 2 months for it to have positive impact on the platelet count.

    Please do have a look at our website to check out a full list of all current treatment options

  • Just to reconfirm above - rituximab took about 4 weeks to work for me, as I remember. And indeed, MMF is yet another treatment you can try, plus platelet production stimulators mentioned above. There are quite a few lines of treatment these days!

    And I had a splenectomy early on - didn't help. You need to be sure it destroys platelets and there is a test for this.

  • It will take some time before the rituxan works. It did not start working until almost a month after my last treatment.

  • I had a splenectomy, it made no difference and you cant reverse the surgery.

  • Having had rituximab 4 times in nearly 12 years ( with min 3 years remission in between each round ) I would say give it some time. It can take up to 3 months for it to kick in. Indium scan if you can before surgery and there are other options available. It is also worth noting that some people live very normal lives with a really low count if they are not overly symptomatic, your body has been bombarded by treatments. Hope the rituximab kicks in for you

  • I was on and off steroids for 8 yrs. In the beginning worked well. I refused to have my spleen removed. I did not like it was a permanent choice, and I knew it did not always work. The Doctors are now coming around to not jump to that choice as quickly as they did before. Also, the older you are the less likely it is to work. I just the 3rd visit they were up to 42,000, after my last they were up to 114,000. great for me. The doctors and nurses had warned me not to get discourage when they dropped they said that was pretty normal. I go in again on Friday to see were they are now. I hope your husband has a turn around and they start to climb. Unfortunetly, treatment for this disease is by trail. Because treatment is not the same for everyone. Good luck

  • My Son is 19 had CP and late Jan he was diagnosed with ITP. It was 4 . He was in the hospital and when he came home it was 226. We didn't see the hematologist until the beginning of March. His count begin falling each week. In June it got to forty. He was put on promacta, to produce platelets in the bone marrow. 50 mg. The first week it went up 53points. The second week 50. Third week 24.. it is now 192 and she is going to cut the does down, depending on the results this week. Thank God for the medication working so far. Doctor said that once they adjust how much to give him . He should stay pretty stable. My asked me ," I already have CP. Why did I get ITP"?

    Have you had this medication?

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