Considering splenectomy to treat ITP

[U_ever]

Hi - I have ITP and have been treated with Prednisone, Dapsone and IVIG intermittently for the past 3 years with no real success at getting my platelets above 50 000. My count is normally between 30 000 - 40 000 whilst on Prednisone - its lower when on no drugs. My doctor has recommended I get a splenectomy this year - I was wondering how others have faired post splenectomy? Is it easy to stay healthy? Did your count improve?

[vijij]

Hi u_ever,are you have any symptom like a nose bleeding or any bleeding?if you don't have any bleeding your itp no need treatment.

[RobertSp]

Hi, The course of our ITP has been similar in that my counts did not respond particularly well to prednisone. Please note that a count of 40 is reasonable. For a person with ITP, the platelets are much shorter lived in the blood stream so all our platelets are younger, larger and more active than the average person. What I found unacceptable was to be on prednisone for the long term. I had every side effect in the book. I had a splenectomy and then consistent counts over 100 for about 4 years. Platelet counts have since gradually dropped. I now manage with occasional IVIG treatments coupled with short term prednisone. Living without a spleen has not been a problem. I get extra immunizations etc. but do not have infection problems or bleeding problems. But I am retired now, so I live a quiet life. There is no guarantee that you will get similar results from a splenectomy but there is a good chance that it can help considerably.

[NickyD]

I had a splenectomy and regretted it since.

I take Mycophenolate to control my ITP which works for me but it is an immunosuppressant and i have had a cold or flu since October last year. I work full time and am prone to picking up infections easily. Mycophenolate was the 7th treatment given to me, splenectomy being just one. Avoid it if you can is my advice.

[sailor]

Hi there. Splenectomy is by no way a guarantee that your count will improve. It has a success rate of around 40% at best so why have a major operation? There are plenty of other medications available to help the count, like the new TPO drugs of eltrombopag and romiplastin. However, if you do not bleed, you can live a normal life without medication, even with a low count of 10. I have for over 25 years and only take medication for surgical procedures like heart by pass which I had three years ago. I refused splenectomy all those years ago and glad I did so. Obviously, you need to be mindful of the care needed and not take part in dangerous past times. I do not know where you live, but there are specialist ITP consultants in the UK around the country who will provide the most upto date and informed recommendations for treatment. Look at the ITP web site under Forum to find the list of locations etc. You can always ask for a second opinion. Splenectomy is now considered an old fashioned treatment and should only be used in rare cases. You will also find on the web site, the percentage rate of splenectomies in the UK in recent years. There is also a host of other information and reports from the best consultants in the UK and from abroad at their annual conventions.

If you are in the UK, you could undergo an idiom test to see if it is the spleen that is destroying the platelets. Again there is information on the web site.

[scaryteacher]

As Sailor says you need to have an Indium test to see if your platelets are destroyed in your spleen or liver. No point having your spleen removed if your liver is the culprit!

Like Sailor I have no meds and live with a count of between 19 and 43. I travel, lead a normal life, but don't drink much alcohol or play contact sports. I have no bleeding, and just bruise when my platelets are low. I tend to work with how I'm feeling as opposed to what my count is.

[AWSAR in reply to scaryteacher]

Hey scary teacher n sailor , i have same conditions as urs . counts less than 10, n no medicine or treatment . n no active bleeding. Only problem i get bruises sometime. but its nothing to worry about .

u both take any supplement ?

[scaryteacher in reply to AWSAR]

Nope, I do take Vit C and D to ward off colds, and I have a low level of Vit D, which is not ideal, as it adds to the fatigue.

[JasonJ]

I had a splenectomy in 2016 as my count always dropped off with every treatment offered including Revolade which started great.

I don't need to take any drugs now but my platelet count does fluctuate a lot.

Last count was 128 and averages about 80. My count without drugs and pre-splenectomy was 3.

It's not to be taken lightly though, it may not work, or only be short term. You will have some scars and it's painful for a while afterwards in fact I was shocked at how painful it was.

I don't have any problem staying healthy, in fact I hold the record at work for attendance, my immune system destroys everything in it's path, this unfortunately includes my own platelets. 🙄

With no spleen you have to have a flu shot once a year, and you will have to have some shots against some other bacterial infections, check with your doctor, these shots last at least 5 years.

If you have a high fever you will have to get to hospital and be checked out as with no spleen bacterial infections will be worse.

Just how low are your platelets without medication though? As others have pointed out you can live ok with a relatively low count.

/Jason

[SufferingTeen84]

Hi there,

I've been in ITP remission for around a year now actually, and I would like to speak out and let you know that, nothing at all worked for me just like yourself, but it was the chemotherapy drug Rituximab which worked - after some harsh back to back 8 rounds, but I guess thats worth it... well, they say its a new interesting drug, I kind of have another autoimmune disorder right after that brief relief of ITP remission, but thought to share about my experience, this is my first post here though I have been a member of this site, for a while now to read out posts!

I hope you can consider trying Rituximab, and I just wish you luck in it all, anyways!

- Ash

[ITPAffecty]

Hi,

Are you by any chance consulting Haematologist in Bangalore, India?? Because even I was treated by Steroids first then Dapson then Rituximab, they didn't work so my doctor was forcing to get my spleen removed. Then i changed my doctor & treatments took different route as I conceived at the same time. Try that Indium test id available. Luckily am still able to save my Spleen and don't want to loose it since there is no 100% guarantee that it works. Am surviving with less than 20k from years with bruises n some nose bleeds but that's okay i feel. And have you tried Revolade?

[Rafiq]

Hello U_ever,

My understanding is that splenectomy is the last resort. I am a little surprised that your haematologist is recommending this treatment. For the last 8 months my count has been fluctuating around 20 and 30 and in my case without treatment and (luckily) without any symptoms either. My haematologist will only intervene if my level drops to single figures or if I bleed or bruise. Please have a discussion with your doctor, mentioning the various experiences that your post has generated, before you agree to have your spleen removed.

Best Wishes and hope we all become platelets millionaires this year.

Rafiq

[Sram]

I have gone through the same and am without any medication for the last 5 months. As long as no bleeding there is no need to go for surgery. Surgery is an option which is an option you can exercise anytime.

[Lynney11]

Remember you can only have your spleen removed once, and it may not work. I refuse to even consider that option.

[Suntied]

Have talked to alot of people who had spleen taken out didn't work because dr said could be liver doing it. So I am not doing that takes out your imune system to risky for me.my numbers stay up between 143000 and 245000 for 4 weeks nothing else worked predispose ivg return none worked but NPlate does.

[Anudeep123]

I am from india and my Normal platelets count is 10k doctor suggested me omnocortil at starting it worked well but when its dose goes below 40 mg it stops working and my count goes from 300 to 10k in a week now doctors are forcing me to remove spleen as the drugs are having very bad effect like moon face,red spots on whole body,strecth marks(not normal ones) but are of intense level it seems like my skin is going to be torn and viens are visible,headache etc.