anyone had their spleen removed

[rizzo1018]

suffering with I T P for the past 3 years and seriously considering spleen removal . i know there is no guarntee it will work but if it does no more prednisone and the 75mg. promacta i am taking .. i know there is a test to determine if the spleen is killing off the platlekets so my logic is to have it removed .. need more datta .. anyone have info ?? or has had it done ??? tks .. jimmy

[LifeafterITP]

Personally I would only consider getting my Spleen removed as a very last option. Even if its a success for your platelets it still compromises your immune system. Currently anyone who has had their spleen removed would need to be very careful not to get coronavirus.

You mentioned in your previous post on melatonin that your platelets count is consistently in the 60K / 70K range. Thats where mine is currently and its a perfectly safe level that I live a completely normal active life with.

[rizzo1018 in reply to LifeafterITP]

life .. yes i am aware of the spleen removal leaving the immune system weaken but my 75 mg. of promacta ( max dose ) has me concerned about the side affects ?? without the melatoni i was barely making it to 35k count so for now i will keep taking what my usual dosage but the sleen removal seems to be the cure ?? but not a guarantee i know .. wish for a remission bro .. what is keeping you in the 60 / 70 k range ???? getting a colonoscopy next week and i must have an above 60k count so i hope to make that count .. anyway this disease we have is at least is manageable and not cancer as at the doctors i see the leukemia patients as thin as a skelton with death in their eyes so i am thankful .. are you in the u s a life ?? i am in atlantic city new jersey hunkered down with my cousin till the virus goes away ????????? when ?????????

[LifeafterITP in reply to rizzo1018]

I know your concern about taking a drug (Promacta) every day. I was taking 50mg of Promacta (Eltrombopag here in the UK) every day for 4 1/2 years with no side affects. During that time my platelet count gradually went up to just above the 150k range so my haematologist reduced my dose to 25mg. I have now been on 25mg for a year and my count is in the 60 /70k range. Still no side effects and 60 / 70k platelet count has no effect on my quality of life.

If your 75mg / day is not causing you any side effects and you are having your liver enzymes monitored, I would keep my spleen (even if I was down to 25k) and stick with the Promacta.

That’s just my personal opinion from my own experience, you should discuss with your doctor.

[Gabriella28 in reply to LifeafterITP]

You are fortunate not to have hair loss. I’ve been on 75mg for couple of months now (after steroids had to be withdrawn). Count up to 54. Really hate having to take any of these chemicals but had thought nothing of the eltrombopag till recently when every time I either combed or washed my hair and I was alarmed how much hair was coming out. So depressed. Don’t know how much worse it’s going to get. Going to ask if I can either reduce the dose or switch to Romiplostim. Also going to ask how he thinks he knows the problem is platelet production and not also platelet destruction. He’d said before that my problem was my immune system was over not under stimulated. I don’t understand any of it. Struck so suddenly in my case.

[JasonJ]

Hi there, yes I have had mine removed and was worried it wouldn’t work, but I had tried everything else. It worked well enough to put my platelet count at a steady 150. I have to take a flu shot once a year and also some vaccines against certain bacterial illness but that isn’t so often, maybe every 5 years. Otherwise I feel completely cured. I know this doesn’t work for everyone but it does have a good success rate. I am of course worried about what could happen if I get Covid 19, so that’s something else to think about!

[janran]

Hi Jimmy

I’m in the UK and over here they generally do test to see where in the body the platelets are being destroyed before removing the spleen. It involves removing some platelets from your blood, mixing them with indium and then injecting them back into your body. This is followed up by daily scans to see what is happening to the platelets.

As it turned out I was lucky to be able to have this test because a lot of my platelets were being removed by my liver. Removing my spleen would not have sorted the problem for me and I avoided an unnecessary surgery.

Unfortunately, I understand that this test is a lot harder to access in the USA. It’s a very hard call to make especially when the side effects of drug treatments are often worse than the disease itself. As Jason has said some people do get good results following a splenectomy. It’s something you need to discuss thoroughly with your haematologist.

My ITP is managed by short courses of prednisolone when my count drops below 10. This raises the count to normal until it slowly drops again. It’s a treatment that works for me and generally I don’t give it too much thought apart from watching for bleeding symptoms to keep myself safe. I really hope you manage to find a treatment that works well for you.

Regards Janet

[Gabriella28 in reply to janran]

That’s very interesting Janet. I’d like to mention that test to my haematologist. Does the Prednisolone cause hair loss with you?

[janran in reply to Gabriella28]

Hi Gabriella

I didn’t have problems with hair loss but, in the early days of diagnosis and on high doses of steroids , I had just about every other symptom you could think of. Mood swings, anxiety, shaky weakness, sleeplessness, pain in joints and muscles and stomach problems.

Luckily we have found out that I’m very responsive to steroids and it only takes a 10mg dose for a week for my count to raise from below 10 to over 100. We taper the dose down to 5mg over the next few weeks and usually this will hold the count up for a good while. On these sorts of doses I have minimal side effects and I feel lucky to have found a treatment that works well for me.

Hope you manage to find something as good for you

Janet

[Gabriella28 in reply to janran]

Thanks Janet I’m very pleased for you to have found this out. Stay well

[Hidden]

I had my spleen removed 4 years ago in the hopes that I would not have to be on medication for the rest of my life, but the platelets only went up for about 4 weeks then dropped again. Apparently other organs in your body can destroy your platelets, not just your spleen, and these can take over if the spleen is removed. Also your marrow may not be producing enough platelets causing your levels to be low.

I am not on 50mg Promacta for the last 4 years with a platelet level of about 50. I had two great Hematologists (including one from Stanford) recommend removal but I think most experts in ITP would not encourage you to have your spleen removed. Of course every case is different but I would research long and hard before removing the spleen - I wish I had not had it done.

[Hidden]

I meant to say I am NOW on 50 mg.

[RobertSp]

Hi, I had my spleen removed in 1990. This worked for about 6 years. As one responder said, apparently other parts of the body can take over the function of removing platelets from the system. I have a very bad reaction to prednisone so it was worth a try. For several years I had Ivig treatments in conjunction with short term prednisone. That works for me. And yes my doctor tells me that I am at greater risk with corona virus. If I get it, it is much more likely to be deadly without a spleen etc.

[clm298]

I’m in the same boat...taking 50mg of Promacta. Occasionally I think maybe I should just remove my spleen. I recently decided as long as the Promacta is working for me and my insurance covers it I will keep my spleen. I’m in hopes of a new treatment that will put us all in remission!!

[xoxopink]

I live in the USA. I have ITP and had my spleen removed 10 years ago when I was 14 years old. I’ve been in remission for over 10 years now.

[eciardullo]

I am uncertain whether the splenectomy made the difference at about the same time had a round of rituxamab and well had to come off revelade real quick devoloped a DVT while on that so basically one of these treatments did the trick, of course doctors can't provide the answers so many unknowns with ITP. My gut tells me it was the splenectomy. Since then my platelents have been normal and going on 5 plus years. Although accepting l now have a compromised immune system is the difficult part, 2018 was hospitalized with a virus periocardidis and now with covid l am on pins and needles sometime l think it would be better to live with a low platelet count so l guess advantages and disadvantages, my prayers are with you 🙏...

Good luck...

[NickyD]

Hi Jimmy I had my spleen removed and it made no difference to my platelet count. However, it has left me more susceptible to picking up anything going around. It hits me harder and lasts longer. I take MMF every day and there are no short term or long term side effects with this drug. My advice, avoid the splenectomy if at all possible. Nicky

[dunn258]

I had my spleen removed because nothing else worked and my platelets kept moving downward. After the operation I have had excellent readings for 1 1/2 years. I know they say it won't last but during the last year and a half I didn't have to worry about bleeding to death...It is totally up to you. The recovery from the spleen operation was quick and no problems.

[viviennes]

I had a 28 year remission after a splenectomy. Then a relapse and subsequently an accessory spleen removed and my count went back up again. I take all the shots and have healthier all these years than many other people. The current virus is a concern but for me the splenectomy was worth it for the 28 years without medication. That said, I have read of a number of people for whom it hasn't been successful. It is a hard call. Good luck and platelets up.