Newbie help please. Knowledge is power!

Margaret I can imaging how furious you were with the dentist. I would have been absolutely livid. Glad to hear you see to be improving. You must be so frustrated with things. I agree with having another indium scan it seems a very sensible thing to do. My count dropped last week for the first time since starting romiplostim. I'm hoping the cold had something to do with it. Am over that now. Another count next week the clinic on the 1st Feb .
Anne x

Hi Margaret, you wrote:

Had a long chat with consultant about futures options. He hates the idea of being pumped full of toxic immunosuppressants and says that although the results for splenectomy are much poorer for complete responses- count above 150-- for people with mixed spleen and liver destruction, a fair percentage , about 50% had at least partial responses.If he was in my position he would opt for splenectomy rather than more immunosuppressives.

I agree with your consultant, except that splenectomy does compromise your immune system. The sad reality is that most treatments are either directly immunosuppressive, or compromise the immune system indirectly. These include Rituxan, steroids, splenectomy, etc., etc., etc.

There are a few treatments that do not compromise immunity, including the TPOs , which you have already tried, but also others you may not have considered:

• WinRho (Rho(D) Immune Globulin) is one possibility you might look into. You can get personal reports on WinRho from others on this site.
• Dapsone is controversial here, but my opinion is that WHEN PROPERLY MONITORED FOR SIDE EFFECTS it is safe relative to other options, and has about a 50% success rate even when other treatments have failed.
  
• Danazol

Margaret k wrote: -- for people with mixed spleen and liver destruction, a fair percentage , about 50% had at least partial responses.

Margaret did he happen to mention what a "partial responses" was?

I'm not Margaret, but a partial response is generally considered to be below normal, but safe counts.

Thanks Rob but I looked up WinRho and it would not be suitable for me as I am now anaemia and there is some concern that I may have a haemolytic problem. I have already had ivig, Ineffectively way at the start of my illness. I don' fancy the side effects of Danazol but may consider Dapsone. I know that splenectomy means taking prophylactic penecillin or having it on hand at all times but pencillin seems preferable to some other drugs.

A partial response in the research was one below 50 . At present, after 3 months at 5 or less I would be happy to get to 10 and overjoyed to reach 20! ( then I could fly on holiday)

Margaret this is worth a read mobile.bcshguidelines.com/documents/Review_of_guidelines_absent_or_dysfunctional_spleen_2012.pdf

Thanks, very scary even though I wasn't planning a trip to the tropics. The idea of sepsis is worst. As I am at present full of Rituximab the issue won't have to be faced soon as the necessary vaccinations couldn't be done.
On a more positive note I do have an 80 something neighbour who has myeloma and has lived without a spleen for the past 20 years.

I think the worst thing about the splenectomy is that if it doesn't work, you might have to end up having to use immunosuppressants which make matters worse. It's a tough decision for sure.

Hi everyone,
My good news is that on 75mg daily eltrombopag I've now made it to a count of 10!
Bad news is that recent bone marrow biopsy shows a hypo cellular marrow indicating probable aplastic anaemia. This fits with the low platelets , mod low (96) hemoglobin and low ( .8)neutrophils. Apparently aplastic anaemia can also have an autoautoimmune
origin
Good news is that eltrombopag has been found to stimulate not only platelet production but production of all 3 . Moves have been made to get it licensed for aplastic anemia as well as ITP.
As I am quite well at present I am staying on 75 gm meantime but the dose for aplastic anaemia has gone above this.

Sorry to hear that, Margaret. I hope you get a good response from treatment.

Hi Margaret, its good to know that you are feeling better and eltrombopag is helping. Sorry to hear about the anaemia, but at least it explains things as you say. Good luck with ongoing results.

In the last week two routine blood tests have shown a high levels over 800. (Two recent blood test, both within a week of each other due to recovering from a kidney infectio). Could this level be due to the kidney infection? I have discomfort lower left abdomen still, not pain just a low level discomfort. Any comments I would be grateful. Also what is my next step my GP didn't express any concern re levels it is only since I googled high platelets that I began to worry.

Platelet levels can sometimes rise temporarily due to infections or medication use. I wouldn't just assume that is the cause and would follow up on it, but it is very possible.

Although a count of 800,000 is high, most doctors will not worry unless the count goes over a million. It can be a problem though for people with certain health issues such as people with ITP, or any hereditary heart, circulation or clotting conditions.