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Ivig for surgery 5 years 9 months ago #58111

  • Amcbroom4211
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I had an ivig treatment on Friday to get my numbers up for surgery. However after the ivig treatment my numbers went from 224 on monday, 334k on Wednesday and now to 169k on Friday. I have next week 3 labs to check the platelet count. Im just curious if I'll have to have another treatment before my surgery on the 20th. Has anyone gone through this before surgery and did removing the spleen actually work?

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Ivig for surgery 5 years 9 months ago #58112

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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I had IVIg at the beginning of my diagnosis but it only lasted for 24 hours and then my platelets crashed again. I still have my spleen!

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Ivig for surgery 5 years 9 months ago #58113

  • Amcbroom4211
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Are you on prednisone? Or what do you do to keep your numbers. I was diagnosed in November in 2016 with 15,000. I'm 28 years old.

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Ivig for surgery 5 years 9 months ago #58120

  • Hal9000
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Amcbroom, as I understand, some surgeries require a count of 50+ and others require a count of 100+. Did your doctor or surgeon mention which he was looking for?

When you had the IVIG, was that the first time? If so, perhaps they were seeing how well or poor you did with it. With some, it doesn't help much at all. Kinda looks like you'll need more IVIG.

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Ivig for surgery 5 years 9 months ago #58158

  • meredithjane
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I have used IVIG 3 times over 12 years. The first was to treat a severe nose bleed.
The next was in preparation for a colonoscopy, then removal of appendix.
Each time I responded well (although experienced extreme headache for 24 hours after infusion) & platelet levels dropped gradually over several months.
Otherwise my counts hover around 30, all good.
mj

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Ivig for surgery 5 years 9 months ago #58160

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Amcbroom:

IVIG can be pretty temporary and usually doesn't last more than a few days or weeks. You may need another one prior to surgery. Are you having a splenectomy already after only three months with ITP? No, it does not always work. If it does initially, it can fail at any time weeks, months or years later.

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Ivig for surgery 5 years 9 months ago #58162

  • Amcbroom4211
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Yes my surgery is taking place on Monday.

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Ivig for surgery 5 years 9 months ago #58164

  • mrsb04
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Having a splenectomy after only 3 months seems a pretty drastic move.

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Ivig for surgery 5 years 9 months ago #58165

  • momto3boys
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Ouch! Splenectomy after only 3 months is pretty drastic. I'm guessing you have a very old school doctor. Did you try any other treatments besides ivig and steroids? There's a lot of stuff out there now, I hope you at least evaluated some of your other options.

Regarding splenectomy results, I had a splenectomy as a kid because that's what they did back in the 80s when you had ITP and ivig and steroids only worked briefly. I REALLY wish I could go back and undo the surgery. It didn't fix things for me, and I'm still dealing with my ITP 30+ years later. Now I have to manage my ITP AS WELL AS clotting irregularities that become part of your life after surgery. I really hope you have thought about and evaluated the complications that you will have later in life as a result of losing your spleen.

Regardless, best of luck with your treatment. We all have to make the best decisions in our respective situations. I just don't want you to go into this thinking there aren't other options!

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Ivig for surgery 5 years 9 months ago #58166

  • CindyL
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I waited 2 years after diagnosis to have a splenectomy. It worked for one month, then I was back to having low counts. I haven't had any clotting problems since.
I did Rituxan in 2011 and have been in remission since.

Good luck with your surgery.

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Ivig for surgery 5 years 9 months ago #58171

  • Amcbroom4211
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So you don't clot easily now without your spleen? I was on 90mg for 2 1/2 months and it was a roller coaster for my numbers. With the ivig treatment i went to labs 3 times a week 269k on Monday, 334k on wednesday, 169k on Friday. The next week 135k, 132k and 119 on Friday. I know that they are going to check my count again before surgery and sugerons want it at least st 50k.

What other things do you have to live with, without your spleen?

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Ivig for surgery 5 years 9 months ago #58172

  • Amcbroom4211
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Is the rituxain a shot?

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Ivig for surgery 5 years 9 months ago #58173

  • Amcbroom4211
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My dr said at least 50k, the ivig worked ok but my numbers dropped. The ivig was the first time, i thought i was going to have to have another one on this past Friday but my numbers were high enough that the surgeons wants it at least 50k and on Friday they were 119k.

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Ivig for surgery 5 years 9 months ago #58175

  • tj1989
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No I think she means after spleen removed, she has clot problem. There are at least one other member here has to deal with low platelet count and clot problem at the same time after splenectomy.

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Ivig for surgery 5 years 9 months ago #58178

  • momto3boys
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So you don't clot easily now without your spleen? I was on 90mg for 2 1/2 months and it was a roller coaster for my numbers. With the ivig treatment i went to labs 3 times a week 269k on Monday, 334k on wednesday, 169k on Friday. The next week 135k, 132k and 119 on Friday. I know that they are going to check my count again before surgery and sugerons want it at least st 50k.

What other things do you have to live with, without your spleen?


No, that's not what I meant about clotting issues after losing my spleen. I still have ITP, so I still have trouble clotting when I have low platelet counts and get the usual bruises and petechiae and cuts that don't heal quickly. What I mean by clotting problems is that my body is more likely to form big, weirdy clots because the spleen isn't there to do it's filtering/management job. It's like a clotting pathology.

To treat my ITP I am currently using Promacta (eltrombopag), one of the newer TPO-RA drugs (you can read about these in the treatment section of this website). The treatment is working well so far, but because I lack a spleen I have to be even more concerned about platelet counts that get too high. I am more likely to have complications that can lead to strokes or DVTs or other clotting related anomalies.

Additionally, for the rest of your life you have to be VERY careful if you get any kind of a fever. Infections can quickly lead to life-threatening consequences because there won't be a spleen to play its normal role in immune function. I expect that complications will only increase as I age. I really wish I had my spleen, and don't let them tell you it's some kind of a "throw away" or "unimportant" organ. Do your research (I'm certainly no doctor, and there are lots of folks who are much more knowledgable on here!).

It sounds like you haven't tried any of the current treatment options that work so well for lots of people and allow them to keep their spleens! Please read more about rituxan, and TPO-RAs like Promacta and NPlate. I feel your frustration about being on 90mg of steroids. They can make you feel crazy and they are NOT NOT NOT the only treatment for ITP. I am not on any steroids now because they made me crazy the last time I tried them. Currently I just have to take my Promacta pill once a day, and I find it to be a really easy treatment to manage. Most doctors try prednisone first because it's cheap and it works for some people, but there are a bunch of secondary treatments that are not splenectomy. If your doctor didn't offer you any other options than surgery, it sounds like you might have a pretty bad doctor. If you were presented all of the other treatment options and chose splenectomy, then that is of course another matter. We all have to do what is best for us :)

Best of luck to you regardless!

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Ivig for surgery 5 years 9 months ago #58183

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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This is a good video that explains clotting and ITP:

www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

Basically, patients with ITP have a risk of blood clots, even with low counts. Splenectomy raises that risk, even in young people. Some people end up having to manage low platelets and blood clots at the same time.

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Ivig for surgery 5 years 9 months ago #58184

  • Hal9000
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... and did removing the spleen actually work?


It's a big crap shot. At best, one can just play the odds (of winning and loosing).
The current treatments for ITP are pretty archaic. If it was better understood it might one day be treated with just a shot, or a series of shots, to restore proper immune function.

Those counts from IVIG held up very, very well last week. You must still be on steroids.

Good luck !

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Ivig for surgery 5 years 9 months ago #58185

  • Amcbroom4211
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Yes im tapering down 10mg every 4 days so now im on 30mg till Monday and then will be on 20mg.

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Ivig for surgery 5 years 9 months ago #58186

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Actually, steroids should be maintained or even raised for surgeries due to the stress on the body. Even so, that is a fast taper.

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Ivig for surgery 5 years 9 months ago #58187

  • Amcbroom4211
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That's what i thought but i think there giving me a shot before surgery

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Ivig for surgery 5 years 9 months ago #58188

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Okay, hopefully they do. They should also tell you to stop the taper for a week or so.

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