Spleenectomy

[Lindylou86]

Hi wonder if anyone has had a spleenectomy to treat their ITP and if so has it been successful or has there been a relapse of any kind, I have read that about 28% of patients relapse after a while and therefore the spleenectomy has been in vain as they are put back on steroids. Any information would be greatly appreciated

[Anthonyh7]

The following link may be of some help -itpsupport.org.uk/index.php... plus the following link - pdsa.org/splenectomy.html

You may also find the following video helpful as it looks at all of the current treatments for ITP including splenectomy - youtu.be/lcC329pd-fY(Not working as expected?)

[JasonJ]

Hi, I had a splenectomy in 2016 and it was the best thing I have done. The first few months my blood count was up and down but stabilized and gradually climbed to over 160 consistently. Previously I had tried all the usual drugs including Revolade and nothing worked.

[NickyD]

I had a splenectomy and it did not work for me.

[Daniel87]

I had splenectomy in 2009 and it worked for me. My trc went up to 300-350 and stayed that way for 5-6 years. Was it worth it? Well i guess it depends on level of your desperation. Nowdays i think its not worth it but at that time it was the only way out for me.

[Lindylou86 in reply to Daniel87]

Thank you and yep I think nowadays it’s nit worth it there us so much to think about , concern is if get it and another pandemic comes will it be isolation fir the whole time ? Did it change your life much ?

[RobertSp]

I had a splenectomy in 1990. It worked for a while then the counts dropped again.

[Lindylou86 in reply to RobertSp]

Sorry to hear that , if you don’t mind me asking what treatment are you on now and what’s your count ?my daughter will soon have the decision to make and it is not going to be an easy one for her . Did you have to shield during the height covid ? Take care

[RobertSp in reply to Lindylou86]

The only thing that worked for me was Immunoglobulin treatments in conjunction with prednisone. This was only administered when the platelet counts crashed. Currently I have reduced stress and gone on a organic diet. I have not needed a treatment for about 14 years. Part of that is just learning to live with a low platelet count i.e. 30. Yes I have been quite isolated for about 15 months., and vaccinated twice.

[Lindylou86 in reply to RobertSp]

Thank you . My daughters count at moment is between 11 and 16 so hence our dilemma . Thank you and take care

[RobertSp]

My counts used to crash down to 4 and 5. If your daughter is a teen, she may grow out of it.

[Lindylou86 in reply to RobertSp]

Hi she is 31 , I do all the research and find the information she lives her life , it seem to be her haematologist who is concerned , she has no symptoms except low platelets

[RobertSp]

After puberty it is unlikely that a person will grow out of it. Perhaps it would help to know that low platelets can also mean larger, younger platelets that are more active. "Larger" can be confirmed under the microscope. My hematologist seems more relaxed about it all.

[Jamesheather1]

I had splenectomy when I was 20 with various other drugs including vincristine as there wasn’t the array of drugs they have now. I went into remission for 13 years with counts over 120 and really forgot about it testing every few years. It’s came back with the vengeance when I was 41. I have been on revolade since and all has been great - 44 now.

[dunn258]

I had to have a spleenectomy to control my platelets...It has been 1 1/2 years and my platelets are doing fine...They are now starting to get lower, but we will have to wait and see.