Spleen

[rharvin]

Hi,

I was wondering if anyone dealing with itp had an splenectomy done due to itp and do you feel a difference or was it helpful i just like to know some opinions and feed back because for some ppl i haven't read any good reviews

[JasonJ]

I would also be interested to know how many of you have had a splenectomy and it actually worked. Seems my next best option right now is to try this as even with 75mg of Revolade my immune system adjusts itself and just chomps up my extra platelets. ☹️

[rharvin in reply to JasonJ]

Hi,

Did your doc ever want to prescribe immunosuppressants to see if that would help

[JasonJ in reply to rharvin]

I am already on prednisolone, combined with Revolade it keeps my count up, however I can't stay on prednisolone indefinitely, the next choice is splenectomy or try other drugs combined with Revolade.

I have to way up the side effects of both these options against each other and decide by next week which way to go...

[rharvin in reply to JasonJ]

How long have you had itp

[JasonJ in reply to rharvin]

I have had ITP for just under a year, if I go ahead I won't do the splenectomy until after winter. My doctor says I will have to have some injections once a year. I asked about the indium scan and he thought it was inconclusive, I can't get it here in Sweden anyway. In the UK you can.

[rharvin in reply to JasonJ]

I tell you this thing that we all are battling is stressful and scary and the sad thing is that doctors feel that the next best option is to remove our spleen

[JasonJ in reply to rharvin]

Hi have you tried any other medicine yet aside from ivig and steroids? I refused the splenectomy until I had tried some other options. I tried Rituximab and Revolade (Electrombopag) I think that's called Promacta in the US.

The Revolade has had some effect but it's not a long term solution as I have to combine it with other drugs.

Meeting my Haemotologist today, he's going to tell me I don't have any good options left, better have a sending off party for that spleen! 😭

[NickyD]

Hi, I had a splenectomy and it did not work. I now take penicillin twice a day to reduce the chances of infection. I would not recommend that it is done. I wear a bracelet to say I have no functioning spleen bought from the ITP support group. NickyD

[rharvin in reply to NickyD]

Wow sorry to hear that how long ago did you have the surgery and did it help with the platelets at all? Because the doctors are making it seem like thats the best thing for me right now @NickyD

[NickyD]

About four or five years ago now. There is a test to you can have to see if the spleen is destroying your platelets - insist on having that before the splenectomy. It is called an indium test. N

[rharvin in reply to NickyD]

Ok thank you

[NickyD in reply to rharvin]

Good luck

[rharvin in reply to NickyD]

I will keep you posted thank you

[rharvin in reply to NickyD]

That indium test do you know if thats done in new york thats where im from

[Illin in reply to rharvin]

Hi I'm in Illinois...need help finding out if and where they do the indium test here in the U.S. soon! Have you had any luck getting info?

[hassell83 in reply to NickyD]

I wish I had known about that test, I wouldn`t have had mine out if the test proved something.

[rharvin in reply to hassell83]

How long did you have itp before you did the surgery and did it help in anyway

[hassell83 in reply to rharvin]

I had the ITP in Mar. 2009, then they took out the spleen 4months later. It didn`t make any difference, no side effects. I wouldn`t do it again.

[Illin in reply to NickyD]

Hi I'm in Illinois...where in the U.S. do they do this test...PLEASE...have to find out soon.Thanku!

[NickyD]

You will have to check your local ITP support group. Sorry cant help you there. N

[Wenden59]

Get them to test you for everything before you have it removed. They wanted to remove my spleen, I had a bone marrow biopsy they found very very early lymphoma, had not gone to my lymph nodes. Four doses of chemo and touch wood my platelets have been stable for over 12 months

[22-patience]

I had a splenectomy and it did not work. My dr told me that I would eventually have to have a splenectomy if I really wanted to be rid of ITP and as I wasn't getting any younger (the surgery can be more difficult for older people) probably should have it done. So I did. Did not do my homework ahead of time and regret having it done. However, the surgery went like a breeze. No problem with bleeding but did absolutely nothing for my ITP and opened the possibility of contracting even more illnesses. I would definitely have the test that gives some info on what is really causing platelet depletion. if it wasn't available through my doctor in my area I would truely travel to where it was available. To me, it's that important.

[rharvin in reply to 22-patience]

Wow thanks for the info the docs at thr hospital is pressuring me to have this surgery they say i won't have to keep coming to the hospital for the low platelets they make it seem like life will be so much better

[rharvin in reply to 22-patience]

Do you steal deal with platelet issues after surgery or what is the new issues deal with after the surgery @22-patience

[22-patience in reply to rharvin]

I haven't had to do anything different. I have never taken an antibotic daily as I have heard many people after splenectomy have had to do. I just take prednisone daily. I have my platelets checked every week or two depending on my symptoms, i.e., blood blisters in the mouth, nosebleed, gum bleeding. Whenever I go away from my home on a trip in or out of country, I take an order from my hemotologist to have a blood draw, as needed, with results faxed to her direct and a copy of the results given to me. Then my prednisone dose is adjusted accordingly. Luckily, I have been at home when my platelet count has fallen below ten and have had to go in for IVIG. I do carry a prescription of Amicar with me at all times in case of severe bleeding. The prescription is extremely expensive. I have been told by my hemotologist that if I feel ill, have a fever, etc. to go to emergency immediately. Have to worry about infection and inflamation. Hope this helps. 22-patience

[rharvin in reply to 22-patience]

I was discharged from the hospital today for low platelets they gave me ivig and steroids to bring it I just started this nose bleed thing that scared me i experience the blood blisters i had itp for a year now.....i just want to try something or explore other options b4 saying remove my spleen and now experience new illnesses @22-patience

[22-patience in reply to rharvin]

Chances are you wouldn't experience new illnesses that couldn't be taken care of easily. Everyone is so different. Talk to you doctor about all of your options. There are a lot of them available now and some meds the doctors prefer to use before splenectomy. Good luck.

[rharvin in reply to 22-patience]

Have you contracted any illnesses since having the spleen removed

[22-patience]

No. No major illinesses. Just annoying infections caused because of all the prednisone I have had to take over the years. Never in remission in eight years now. Time for me to find another avenue!!!!

[rharvin in reply to 22-patience]

Thank you for the info it was helpful good luck

[RobertSp]

I had the splenectomy in 1990. I went into remission and drug free for about 5 years then platelets dropped again. No infection problems. I served in the military in a combat zone with no spleen and less than ideal cleanliness conditions. I get immunised every 3 years or so for extra infections but it has never been a problem. The iridium thing was not available in 1990. I would suggest doing it if possible. I understand that the tonsils or the liver can take over the job of removing platelets once the spleen is gone. But for me that is taking a long time.

[rharvin in reply to RobertSp]

Thank you that was helpful info

[Ali48]

Had splenectomy 1989 didn't work had counts in single figures since but I don't bleed, then took azothiaprin ended up with pancreatic us what fun.