After spleen taken out!

[beach311]

My mom is 89 and had her spleen removed 2 weeks ago. We thought this would be the answer to ITP. Her platelets remained high for 8 days but now are rapidly going down. What treatments have people done next? They want to put her on organ MRI rejection medicine. Thanks

[Robert1959]

From my understanding, the removal of the spleen is really a last resort these days as it of often not successful. There are many new treatments available these days that should be tried before undergoing that surgery.

The anti-rejection treatment you are referring to is probably Cyclosporine which is one of those other options. I was given it during my illness and do not remember any side effects but unfortunately is was not successful for me.

Do you know what other treatments she has been given? Has she been offered either NPlate (Romiplostim) or Promacta as yet?

[Evak57 in reply to Robert1959]

Hi there. Few years ago my daugther had have ITP, and after I started with Colostrum her plaletes start to go up. Before this ,she was on prednisolone for over one year.

[beach311 in reply to Evak57]

Prednisone seems to work but it's hard on the body

[beach311 in reply to Robert1959]

We did promative and n plate both have not worked. Right now we see I'm to be doing ok with the spleen out and presozone , but it makes your sugar go up . Good luck to you

[JasonJ]

After having mine removed my count has yoyo's like crazy, so everything from 40 to 140. It is better than before though!

If I take just a small amount of prednisolone it keeps my counts up much higher, although I have now stopped with all meds.

What count has it dropped to? I had over 600 after the operation I think my lowest was about 20 after op.

[Noel54 in reply to JasonJ]

I had my spleen out last October and count 450 after op gradually been going down, every six week checks until last two times 114 then up to 131 it's taken along time but first time they have gone up with no Meds so fingers crossed that they keep rising

[beach311 in reply to Noel54]

Thank you for your encouragement hope it works for my mom

[beach311 in reply to JasonJ]

Thank you for your encouagement

[beach311 in reply to JasonJ]

She is down to 41000 yesyerday

[JasonJ in reply to beach311]

Has she tried Revolade?

Is she on anything else right now, I was taking prednisolone for 6-8 months after my operation, they slowly tapered my dose to zero. Just a small amount raises my platelets now, before the op it had no effect, not even 80mg.

[beach311 in reply to JasonJ]

Mom had her blood tested today . It was 47,000, so we were happy. I told her i have been corresponding with you and she is 89. She was wondering how old you were and appreciates your input. Have a good weekend. Carrie

[JasonJ in reply to beach311]

I am only 46, my doctor said he would not of advised me to have the splenectomy if I was over 60 as it is quite hard on you physically afterwards. Your mom is brave, did she have keyhole surgery? I did and the pain afterwards in my gut and shoulders was incredible, apparently they pump up your torso with gas when they operate, this causes some temporary nerve damage!

Jason

[beach311 in reply to JasonJ]

Yes she had the keyhole one, coming along with her recovery, just keep praying each day that her platelets stay up. She is very determined coming today to my home for her great grand daughters birthday party!! Have a good day

[Pzena]

Hi, I just read your post. I was diagnosed about 9 yrs ago. I am currently 72 yrs. old. they wanted to take out my spleen, but I said no. I treated with Prednisone on and off for 8 yrs. My doctor did not want me to stay on Prednisone, because it does have a lot of side effects (what doesn't?). After living with the ITP, I started to know my body. I never let them treat unless I went below 20,000. I did not have nose bleeds, on anything except bruising and sometimes fatigue. I was still playing pickleball at that time. Last July I went through a lot and I was having a hard time keeping my count above 20,000 without high dosages of prednisone, so I decided to try rixtium. I had 4 infusions. It does not start working until about the 3rd treatment. So far my count has been well over 100. I am sorry your Mom had her spleen out. I had done enough research on my own, that I was not convinced 9 yrs ago that it would work, (especially when you are older).and now the medical community is finally not jumping to that right away. Tell your Mom not to be scared, and not to worry. It is just a matter of finding what works. And if she is not having severe reactions, like dangerous bleeds, she can live fine with low counts. I hope this helps.