Should I go for splenectomy? - ITP Support Assoc...

ITP Support Association

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Should I go for splenectomy?

fooka
fooka

Hello

I am 28 years old male. I was diagnosed with ITP 4 months ago.

I started Prednisone (corticosteroid) and after no response, I started Imuran (immunosuppressants). My platelet count is still less than 10,000.

I have no active bleeding also not have any other issue, but have some petechiae on legs and feet ( 20-30 tiny red spots) when I do not take Prednisone for 2-3 days.

Now doctors suggested me splenectomy.

They also told me there is only 50% changes that platelets will rise after splenectomy.

I am concerned what if it does not work like medicines did not work, I will be without spleen and ITP.

18 Replies
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NO - Please see my previous Posts. My count is around 4k. That is my Normal. I am 61 male

with your identical MINOR bleeding Issues. Once your spleen is removed - that's it, no turning back. 50/50 odds suck. I stopped taking any drugs that were offered years ago.

Good luck.

No don’t have it done don’t do anything drastic. Try different meds there may be one that suits you. 4 months is not long, platelets can go up and down drastically over a period of days, months or years. If you don’t have much bleeding it’s not too bad you just have to learn to live with it. Many people that have had their spleen removed regret it, once done you will be at risk of infections and on medication for life, this is a great site to look up consequences.

Definitely dont have a splenectomy. There are many different drug treatments you can try before a splenectomy. My spleen was taken out and it did not make any difference to my platelet count. It has left me with a tendency to catch whatever is going round but it lasts longer and tends to be more severe. I now take immunosuppressants that work for me and my count is around 270 - 300. NickyD

I had my spleen removed 15y ago when i was 18. Sometimes i regret it because its easier to get sick now and sickness last longer but on the other hand it gave me around 5years of steady platelet count 200-350 without too much need to go to hospital which was very important to me, as i guess would be to every 18yo kid. Corticosterods are evil that almoast ruined my young life so at the time i would do just about anything to get rid of those..Now when i am little bit older i would maybe suggest no to splenectomy, there may be better solutions these days, or you can just say f. it and live with 10k platelets, thats not so bad either if you can afford it(i was not working but rather living slow and take care of myself). I lived year and a half with platelet number between 0-10 without going to hospital and eventually my numbers went back to normal(300 now).

Will they allow you to try Rituximab before a splenectomy? Splenectomy didn't work for me, but Rituximab did.

fooka
fooka in reply to tree_shadow

They discussed Revolade (Eltrombopag) but its too expensive for me.

I checked Rituximab its also expensive for me.

I decided to not to go for splenectomy.

I stopped taking Prednisone and Imuran.

I am going to try some herbs and gluten free diet.

I will let you know about the results

Kulu123
Kulu123 in reply to fooka

How u doing now?

I initially got dx a yr ago but quickly improved after prednisone. Came back again this May and tried the usuals (steroid,IVIG,rituxan, now Promacta) but nothing yet. My Dr also brought up Splenectomy but im refusing! I have other autoimmune issues too and thatll just add on to my problems when it comes to more infections.

Keep trying other options. Im trying to add in green powder juices (for more Vit K) & other supplements.

Ive heard with some ppl, Papaya leaves extract also has some good affects...

I'm a 26 yo male and I did about 4 months of prednisone and when I tapered off did rituximab. That was in August. Had blood work done a couple of days ago and I've been staying around low 100s since then. I was told to just get a blood test every few months to monitor and if I get really sick.

N -plate saved my life, nothing helped me, I had resistant itp ,I had double brain hemorrhage I was miraculously saved and after 5 times ,the last it worked for me , after 2 years iam so healthy

I agree NO. Would rather take my chances with no meds. I gained 80 pounds finally have taken it off after a couple years and platelets increased. I also had my spleen removed definitely don't recommend that either now l have a compromised immune system to deal with was already hospitalized once with a virus now l live in fear with covid.??.

Good luck to you all the best...

oh and l had my DVT thanks to revolade its been fun...but presently thank the lord have been over 300 for the last year, maybe the rituxamab....l was definitely a guinea pig...

Hello Fooka,

Here in the UK, a splenectomy is seen very much as a last resort option and fewer and fewer of them are being conducted here and indeed globally they are in decline. BUT that is not to say that it is not a good option for some people.

What I would say is that it is a good idea to try a number of other treatment options first.

Also do discuss the situation in full with your specialist and get a second opinion from another specialist too.

I have been on Mycophenolate Mofetil (an immune suppressing drug) since 2016 and it has worked well for me. It has kept my platelet count well over 100 (give or take the odd blip) and last week 199.

I have also has Prednisolone (7 times since being diagnosed in 2006), Rituximab twice and Azathioprine (which I couldn't tolerate at all). I responded well to Prednisolone and Rituximab but eventually relapsed on both so Mycophenolate Mofetil (MMF) was started in 2016 and has worked well for me since.

A few links that may help -

1. ITP Support Association (UK) - Splenectomy - itpsupport.org.uk/index.php...

2. ITP Support Association (UK) - List of current treatments -

itpsupport.org.uk/index.php...

3. Platelet Disorder Support Association (USA) - ITP Treatments -

pdsa.org/conventional.html

4. My Purple Patch - My blog covering my ITP story in brief -

myownpurplepatch.simplesite...

Hope this all helps.

Best wishes

Anthony

No to the splenectomy. Doctor will find the medicine you need. Try to Eat healthy as much as you can. Drink lots of water. Exercise. Your condition will normalize.

My nephew has ITP he still taking medicine but now his goal is to get off it after 5 years.

With medicine his ITP is around 40,000-50,000

we believe he can live a normal life with 10,000-12,000. If he had to.

Keep positive , you will learn to live around this condition. It definitely will normalize!

the medicines or the medical procedures are harsher than this condition.

God Bless!

That is true. I have had ITP for 19years. For me prednisone is a temporary fix. I get Rituxin infusions when my platelets drop. That keeps my platelets up for 2-3 years and then I go through the same routine. Everyone is different ; and there are a lot of meds. that can help besides prednisone. Prednisone is a good/bad med. I have been on as much as 80 mil. It has also induced diabetes. Just giving my story; it is up to you and your hematologist .

My Dr has also told me that he wants to remove my spleen and I'm not sure what to do my platelets are at a count of 21 at the moment and have been that way for a while I have had infusions and also different meds but they havent worked, my main concern is that the spleen fights the infections in your body and without it the kidneys and liver have to work twice as hard which is a big concern so really think about it b4 you make a decision

For those with no insurance and money is a concern, you should give a try to Dapsone. It work for some.

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