Splenectomy didn’t work now what?

[Lawcomo]

Had splenectomy 10 weeks ago platelets were normal till today was down to 50000. I knew going in was only 50% chance of curing but my Dr recommended and so I took the chance. I was taking end plate injections and they had stopped working. The Steroids didn’t work. I appreciate this group and your knowledge. ( I know many are against spleen removal) but I can’t turn back time. What are my options. I haven’t met with blood dr yet, just a blood lab today.

[Herkules56]

Sounds like my story I was taking N-plate for 4 years until last September when I got a new Dr. That immediately told me that I wasn't supposed be on that until I had my spleen removed witch I always thought was weird. Because my old one moved off to do better thing fit a better job and moved to new York I think but even then I haven't been back for a blood test or anything because I live so far away from the hospital that takes care of me. And because of the corona it's just been hard I general. So I don't even know if it worked it or not.

[Lawcomo in reply to Herkules56]

So you had your spleen removed as well? Hope you stay happy and healthy.

[Dahle2424]

That was my option years ago and flat refused. N-Plate never worked and steroids are a waste of Time. I am 60 and had Open heart surgery in March and went in the hospital at 6500. IVIG and Platelets got me to 59,000. success. Checked out of the Hospital @ 8000.

I am done with Hematologists. The fact is, this is my NORMAL. Discuss that with your Doctor. I have never had a nose bleed for no reason, stop bleeding with Pressure, and do bruise easily, but is zero concern. I don't even bother taking blood tests anymore. Quite Frankly - The Doctors think that I may not even have ITP. Live life if the bleeding is not an issue. Good Luck

[Lawcomo in reply to Dahle2424]

I never had a issue till last January, got ulcers in mouth and bruises everywhere and the red dots my platelets got to a 1000, I’ve never had the nosebleeds or problems of clotting. I feel bad for going through all the pain of surgery and now weakening my immune system. I never get sick and not even had a cold in 5 years and I work at a school. I have had 3 transactions of platelets since being diagnosed.

[Dahle2424 in reply to Lawcomo]

Ask your Doctor About Genetic testing, and if your insurance will cover the cost. Cost about $6,500 but paid by Insurance. Unfortunately nothing came of it.

[kathleenp]

I'm sorry to hear that I have tried many treatments with varying degrees of success i am currently on Imuran which is keeping me stable so far. Spleen removal would not have worked for me. Stay safe and good luck

[Lawcomo in reply to kathleenp]

I have not met with my blood dr yet hoping he has a plan, thanks for the info Kathleen.

[BirdieB]

I had one in time it will make your platelets go up I was 10 yrs old at the time now I'm 50yrs old and my platelets are at 410000

[Lawcomo in reply to BirdieB]

Thanks Birdie I’m almost 60, hoping this fixed my problem I’ve got lots of living left to do.

[JasonJ]

Don’t panic, I had a splenectomy 4 years ago, my platelet count post op was a rollercoaster ride for about a year, ranging from 600,000 directly post op to as low as 30,000. I thought it had failed like you at the low point and it was just going down. But after about 6 months of yo-yo blood counts it started to climb and eventually leveled out at 150,000. I was tested once a week until then.

My original count was 3,000. No treatment worked effectively.

To be honest I am so pleased I actually did the op in the end as I have now had 4

Years of not even having to think about ITP and how is my blood count etc.

As for getting sick, I haven’t been sick in the last 4 years more than a slight cold. Having no spleen doesn’t make it easier to catch anything, it just makes recovery from bacterial infection harder and more lengthy. Hence all those injections you should of had against various nasty bacteria!

Good luck!!

[Lawcomo in reply to JasonJ]

Thank you Jason you give me hope!

[Lawcomo in reply to JasonJ]

Today’s count was 11000, starting me on iv drip tomorrow of rituximab and starting steroids again.

[JasonJ in reply to Lawcomo]

Oh no, that’s terrible.

But the steroids didn’t work!

Hate taking those, avoid if possible especially as they don’t help! Have you tried Electrombopag? It worked a little for me but the effect diminished after some time.

Rituximab is a one hit wonder, but at least you’ll get a boost! I guess you have had it before?

[Lawcomo in reply to JasonJ]

Never had it, this drug is short term fix.

[JasonJ in reply to Lawcomo]

Sorry thinking of IVIG, but I had Rituximab also. IVIG usually puts platelets up, very effective but only short term.

Hope Rituximab works for you, weird they didn’t try that before spleen removal!

[NickyD]

Hi Lawcomo

I had my spleen removed about 10 years ago and the treatment did not work. As a result, I am now immunocompromised. This means that I am more likely to pick up any colds, flu or any bugs going around, which then longer. I put up with it and keep well away from anyone who is showing signs of being unwell.

Through the Covid crisis I have stayed at home, not going outside my front door even once and I am now on day 130 of being home alone. Others that have not had a splenectomy do not understand that we will pick up infection more easily. So it is up to us to keep away from others when they are not well. I have certainly climbed the walls several times and it has not been easy being in lock-down for this long.

It is disappointing to hear that your operation was not successful but rest assured there is a lot of life to be lived where you have no spleen. I do understand your frustration and wish you the best.

Take care and stay safe.

NickyDx

[Lawcomo in reply to NickyD]

Sorry to hear that do you take any meds to keep your platelets up?

[NickyD in reply to Lawcomo]

Hi

I take mycophenolate every morning which is an immunosuppressant. That works well for me. NickyD

[sam_b]

Sorry to hear your story Lawcomo & that it hasn't worked out for you right now but as JasonJ states there is hope!

If it's any consolation I've lived for years with a count of 30K or less and other than fatigue I've generally been ok.

Saying that I refused a Splenectomy some years ago from a consultant Haemo who was insistent on me having it after researching the possible after effects. I generally try and stay fit but have struggled to fight off even minor illnesses and colds over the years and even stopped accepting flu jabs because I would become ill for weeks at a time.

I hope you stick around on here it would be good to know how you get on with your platelet count plus there's so many great people on here with fantastic advice and support.

[Lawcomo in reply to sam_b]

Thanks Sam, this site has been a godsend, the group is so knowledgeable and supportive, until the first of this year I had never heard of this disease. I am scheduled to see blood dr 24 th of August. I might call and see if they can get me in earlier for at least a lab. I definitely don’t want to be hospitalized and have to get transfusions.

[rjsmyth]

Your options would be to go back on Nplate or one of the other TPO antagonists. Just because one of these antagonists has stopped working does not mean to say another one won't work.

[Asimkumar]

Homeopathy/ayurveda both work..

[rjsmyth in reply to Asimkumar]

Mumbo Jumbo and dangerous rubbish.

[Kalden25 in reply to rjsmyth]

Hi rjsmyth,

I'm curious to know why you are saying Homeopathy/Ayurveda is 'Mumbo Jumbo and dangerous rubbish'? Have you tried either/both and had a bad experience?

I'm newly diagnosed with ITP and already on my third lot of different medication. I would be open to trying something different like Ayurveda, I'm certain that by doing Yoga, Meditation, Mindedness aswell as the healthy eating of vegetables, fruit, nuts/seeds would be better for me than the Prednisolone tablets I was on?

Regarding Homeopathy, my 5 year old daughter suffers with reoccurring tonsillitis, she literally gets it every 6-8 weeks and has to have a 10 day course of antibiotics each time. She had it twice in a space of 4 weeks between March and April this year. In May, we contacted a Homeopath who then made up and sent some treatments for her to try. I am extremely happy to report my daughter has not had another bout of tonsillitis since we started in May. We are over the moon with her Homeopathy treatment and for us it certainly hasn't been any 'Mumbo Jumbo or dangerous rubbish'.

[Lawcomo]

Went back to Dr. my platelets count was 11000, putting me back on steroids and another drug, will post when I get name.

[Lawcomo]

4 weeks of rituximab .

[Anthonyh7 in reply to Lawcomo]

I have had good success with Rituximab. Had it in 2010 and then again in 2013 and it gave me remission for 2 years and 8 months both times I had it. One thing to keep in mind is that it doesn't always work quickly.

Some people see a response in platelet count within a few weeks but to can take anything up to 3 months, so it is a matter of being patient with it in some cases. I responded quite quickly (platelet counts rose within a couple of weeks both times I had it), but have read of others who have taken a while.

Rituximab is an immune suppressant so it will make us more vulnerable to infections, viruses etc.

Hope it works for you.

Take care

[Lawcomo in reply to Anthonyh7]

Thanks Anthony, nervous about taking with all potential side effects. You give me hope, glad to hear of your experience.

[tree_shadow in reply to Anthonyh7]

Rituximab works for me.. Remission for 8 years approx. Now using mycophenalate which is also working. (2018 was also diagnosed with SLE, 2000 with ITP)

[Itpnotforme123]

10 weeks ago that’s normal wait till your body adjusts to the removal of the spleen! I got my spleen removed 2 years ago and my number been up it didn’t take at first but it will shoot up trust me! You will be fine!

[tree_shadow]

What percentage of cases do splenetomy have long term success? Does anyone know?

It didnt work for me.

[Lawcomo in reply to tree_shadow]

My dr only said 50% chance.

[tree_shadow in reply to Lawcomo]

I suspect its lower (long term).

[Lawcomo]

Just thought I would update, after the rituximab treatment not seeming to work. Dr gave me another shot of n-plate. As of October of 2020 I am in normal range of 400000, and in remission. I only am doing blood work every 6 months. I feel better and my energy level is up. Thank everyone for your knowledge and support.

[mfuller9220]

I feel your frustration. After my spleen was removed I developed spleenosis which is when spleen debris floated around a my gut and attached themselves to other organs and started growing. It took a while for mine to mature, but a few months ago my platelets took a sudden drop. I have been running in the normal range for a number of years. But suddenly they started dropping around 30,000 points a week. I made an appointment with my oncologist to chat with him about my options. When I told him about the spleenosis and their redevelopment, he basically told me that there is no known cause for ITP and there’s basically no cure for it. He sent me off with a year prescription to get my blood checked weekly and said he was not going to give me a follow up appointment. I was so overwhelmed I just wanted to give up. However I did some research, and looked into some ideas I got from other folks with ITP. First, I cut Gluten out of my diet as best as I could. That’s very hard to do because there’s gluten in everything including your vitamins. Secondly I started taking probiotics. Not just any probiotic. I only found one that worked. I take garden of life hundred billion probiotics that are in the refrigerated section of the health food store. They have a freeze dried version, but they did not work for me. I take 1 trillion a day. Three in the morning three in the afternoon and four at night. Within three months my platelets were 196. They went up 60,000 points in the first week. This is not scientific. It is just my personal experience. There is nothing to lose with probiotics. When you get your gut healthy the rest of your body will be able to perform also. I’ve never gone back to see my oncologist again, and I don’t intend to. I have just changed my diet to eat fruits vegetables and healthy things cutting out everything that’s not healthy and include my probiotics daily.. Probiotics are a lot more healthy than steroids anyway. Steroids kill your guts and actually causes leaky gut syndrome which will increase pain level and arthritis etc.Found that out through personal experience during my first bout of ITP. If you have any questions, my email is [e-mail].