Splenectomy successes

Had my splenectomy may 10th had ivig and methyl pred on may 7th and 8th and got my count to 90 for surgery count of 74 on may 11 th and count of 126 on may 15 th on may 19th had blood blisters and count of 8 back on pred 19th and 20th and today count of 1 and had Ivig and will be getting the same tomorrow the doctors say they still need to give splenectomy some time before starting the next treatment however things don't look good

So sorry to hear that JPB. That must be terribly discouraging. Can there be a delayed response from splenectomy? I don't know, but if not, You gave it a try and that takes courage. Its about all we can do it seems, just try everything on the list. Take care and have a speedy recovery

Thanks poseymint,and I don't know about a delayed response I think you usually get a quick response but the surgeon did say counts can bounce around before settling down but I'm not sure he meant bouncing around at 1 if not I think they will try rituximab I think it's the only drug left to try .

My first splenectomy was in 2000, as a last effort to get my platlets up. I was in remission for 4 years, they dropped when I had my daughter but went back up, then dropped again 7 months after I had my twins in 2010. I got an ultrasound and it revieled that I had an acessery spleen! My counts didn't come back up after steroids, ivig and Rutaxin (sp?). I just got my 2nd spleen removed 4 weeks ago, the surgeon found kidney shaped tissue on my colon and tested then... what do you know more spleens, so he had to remove 4 inchs of my colon to get rid of them all. As of right now my platlets counts are sky high. The highest I have ever had them (over 500k). I pray it works this time.

My son Mark was first diagnosed with ITP at the age of 16 months, we went through a few years of multiple IVIG, prednisone. IVIG was successful at first with temporary results. He then got to where his platlets would stay at 2 even with IVIG. Finally at 3 and a half the hematologist and myself made the decision to go ahead with spelenectomy. At that time nplate was just coming out but the doc felt that Mark would still need the splenectomy. Mark is 7 now and has not needed any additional treatment - his platlets hang out around 300-400. I think he has had some relapses, like right now I see alot of bruises on his legs. But none of the massive nose and mouth bleeds he was having. He has had a severe bout of post splenectomy sepsis 6 months after the operation which was terrifying. He has also had a few hospitalizations for IV antibotics due to fever and rule out sepsis.

I also work in the ER and ICU at a major research hospital so I know what the risks to splenectomy are. Its all about risk and what risk you are willing to take. I have also had two children die in our PICU due to head bleeds with low platlet counts/ITP and I've had more than one sickle cell die of sepsis (sickle cellers often have no functioning spleen or post splenectomy.

Overall it was the right decision to go ahead with the splenectomy.

I wanted to update everyone on my recent splenectomy. I had my surgery on 7/6, and as of 8/23 my counts are at 203K. So far so good. My doctor had told me that the first year will be very telling. She stated that usually if you make it a year that you have a good chance of long term remission. Keeping my fingers crossed. I will keep everyone posted.

Sandy

Great news, Sandy! I'm just curious as to what the doctors definition of "long term remission" is?

hello again,
I have to tell about the events after my last post. The N-plate did help and my platlets went up to normal levels. I got N-plate four times and now (2 months after the drop) the levels are OK with no additional therapy.

Hello Everyone, So I was searching for some answers to some new symptoms I've been having and thought I would pop in here and reply to this as well. I was diagnosed in 2004 with ITP (my platelett's dropped as low as 21k I think...it was a long time ago) and I started seeing a hematologist. I was put on prednisone (as much as 80mg a day) for a year. My count would be normal while on high doses but would drop back down when the doses were low. The side effects were really bothering me and my hema suggested a splenectomy and I went ahead with it a year later. (April 2005)

My platelette count has been fine ever since. I have them checked every 6 months to be sure and my count was 340k last week. The surgery went fine. Though when they got in there, my spleen apparently was quite a bit larger than expected, had two baby spleens, and it had it's very own blood supply which surprised the surgeon. All in all, it went very well.

I am going to make another post about my current question to see if I can get any help from the community with what is going on now. I used to come here years ago when I was having ITP issues and I found the community to be a big help.

I am sort of in Brittany's shoes, 26 and been diagnosed with ITP since Dec. 2006. I have been through every treatment, and currently recieving weekly NPlate injections as well as weekly blood draws. My counts are holding in the 30s. Been in NPlate for going on 2 years. The IVig worked wonderful for me, until I started getting horrible headaches and nausea two days after treatment. My hematolgist has been pushing the spleenectomy for a few years now and I haven't been ready to take that step. I am constantly fatigued, and having three kids 6 and under plus a full time job I am always worn out! I am just about willing to risk that my spleenectomy will be a success to relieve some of my issues. Weekly injections and blood draws are not what I want to be doing for the rest of my life. I don't know what else to do...

Jenna

I don't understand why you have to get weekly blood draws. I'm pretty sure that isn't part of the protocol. I know in the US you aren't able to self inject at home but it still shouldn't be necessary to have bloods done every week once you're stable. But in cany case, how about changing to Promacta, they surely won't want you to go in every week for a tablet. Would give you far more freedom.

Hello everyone...I'm back again to update how things have been going since my splenectomy on 7/6. I had my labs drawn on Monday and I went from 203K to 65K in 2 weeks. So, it doesnt look like things are going to be very successful for me. I am trying not to get too worried, as my MD stated her defenition of success is to just stay at a safe level, and that sometimes after splenectomy you will hold around 50k. I dont have to be at normal levels, I dont worry anymore unless I get under 15K. I am to have my labs drawn every week now, so I will keep everyone posted....might need advice on what to do next if I end up crashing over the weekend.

Thanks
Sandy

Sorry to hear that Sandy. The one big hope is that I have seen some people respond better to treatments after splenectomy and have good remissions. So if it comes to that, you could be one of them.

Hi everyone...just wanted to give an update. My Platelets are back up to 150K as of Monday. This is one crazy ride! Hoping I just had a setback due to a sinus infection. I will continue to keep everyone posted.

Sandy

I'm glad I found this forum as I am having autoimmune issues again it seems after 27 years. I ha my spleen removed 27 years ago at the age of 16 due to ITP and a failure to respond to steroid therapy - namely prednisone. I never again had any problems with my platelets and my platelet count to this day remains at 350K.

I am now looking at the possibility of Lupus which is something I had never even heard of until recently. I'm seeing a rheumatologist next week for a full work up but the preliminary lab results are pointing in that direction and I've had multiple physical symptoms over the last several months. I'm starting to learn more about Lupus and the possible correlation with ITP. I know there is another Lupus thread on here.

Other than a couple of infections, I have had no problems related to not having a spleen and as far as I am concerned, having it removed cured me of ITP.

If you would like to discuss Lupus, you could post in the Lupus area. Having it myself, I'd be happy to talk about it.

The only time you will know if the splenectomy was a cure is on the day you die. Until then, there is always the chance that it will return. Glum, I know, but true. Part of the problem of having no spleen is that if you would acquire another autoimmune disorder and end up on immunosuppressants, you would be more immunocompromised. Some Lupus patients can get away without a lot of medications. I haven't been that lucky. I have been on various doses of Prednisone for 7 years and also use Methotrexate (injectable chemo). I've been sick for the past two months....bronchitis and pneumonia and can't kick it. Four antibiotics in that time.

Good luck with your appointment. Which lab results do you have so far?

Hi Sandi:

I will respond over on the Lupus page as I think it may make more sense to do it over there!

Thanks!

Janet

I had my splenectomy in 1999. We tried prednisone for a year but it worked for a week before my numbers would plummet. I was great for about a year but during my first pregnancy my numbers went down again. We tried the steroids to no avail. I delivered and needed a transfusion but within days my numbers were high again. We went through the same drama with the following three pregnancies. I was very lucky to get an OB that was incredibly knowledgable and we found a cocktail of drugs that kept my numbers up for two week spans. With pregnancies 5-7 I had textbook boring pregnancies. It was fabulous!
It has been over five years since my last low count. DOes that mean I can ditch the ITP label? Am I cured?

Duck:

No, you can't quite ditch the label. There is no cure, only remissions. Wow - 7 kids!

At frist my platelets drop to zero, all the drugs they gave me wasnt working. 5 weeks ago my spleen was taking out and my levels went up to 96,000 then droped 3 days later to 30,000 and in a weeks time was at 8,000... Last week I got a treatment of Rhutuximab and anothe 3 weeks to go.. I did this befeor the surgery and it didnt help..I took Prednisone 100mg for 3 days and was taking off it cold turkey in one day... I dnt know where we going from here but as I see on this site ..my levels are the lowest of anyones...

@jchrism8: Hope you will find a cure, for the N-plate worked very well, are your doctors considering this? I got my levels up in 2 weeks, after one month with only 3,000 - 5,000. And now I am in remission for 6 months now, without any cure.

@ silvass ,,,, Hmmmm uh no not yet.. I will ask em on Wednesday... I done told em to send me to bigger clinic and lab ..lol

jchris:

Nah, many people have/had counts below 10. Everyone is in a different process right now, some treating with safe counts, some treating with normal counts, some in remission, and some doing no treatment and just living with low counts. It varies.

My daughter, age 21, had a splenectomy 7/3/12 and her numbers have been in the high normal range since. She also had an auxiliary spleen which they also removed. At her appointment with hemotologist on 10/9, he said, see me in 6 months. She is elated to get rid of the 7 prescritions drugs and weekly blood tests. So far, so good.