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IGg blood testing

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15 years 2 months ago #6630 by charlotte
IGg blood testing was created by charlotte
I spoke with my surgeon and he made a suggestion about taking out my spleen while he is doing colon resection surgery since it may help with platelet count.

He said it was a 90% chance of increasing platelets because the spleen can be overloaded with platelets but isn't that if the spleen is enlarged? I read an enlarged spleen is holding to many platelets but mine is not enlarged.

He asked me if I have had a IGg/IGm test and yes I had a IGg in 2006 and it was positive. So I came home and did some research online and found with postive IGg it can be an immune disorder with negative IGg it is NOT immune disorder. Is this true? I am not sure.

So I am thinking taking my spleen out wouldn't help me so don't think I will have it done. It would be wonderful if it would help.
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15 years 2 months ago #6635 by eklein
Replied by eklein on topic Re: IGg blood testing
The thing about surgeons is they don't stick around after the surgery. Even if you have a platelet increase right after the surgery, for many people that increase is not sustained and platelets can fall again. It could be a month, a year, a few years or more than a decade - what type of remission would be worth your spleen? Each person has to decide if the gamble is worth it to them. If you are over 40 the remission statistics are worse.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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15 years 2 months ago #6636 by SteveC
Replied by SteveC on topic Re: IGg blood testing
Spleenectomy is a very personal and difficult decision. I elected it 10y ago after bottoming @ 0 and being refractory to steroids, Anti-D, infusion which is obviously temporary. I couldn't risk the consequences of O after 2 months living there. That said, my 10y since were clear with 300K consistent. I simply monitored my health and fevers but it never became a factor. When a spleenectomy is planned there are 3 inoculations typically given in advance to build antibodies for the future and you renew a couple of them every 7/8 years. The BIG risk is there's no test to ensure the spleen is the culprit and it may be for nothing - tough decision. There is a nuclear spleen scan but I don't think it's necessarily reliable either. I consider is a viable option of consideration but discuss it with your MD. Nothing cures ITP, mine has returned after 10 y but it was part of my problem and it has been a good 10y.

Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
  • karenr
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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15 years 2 months ago #6657 by karenr
Replied by karenr on topic Re:IGg blood testing
My spleen, which was removed in 2004, was never enlarged. AFter my splenectomy, my platelet count only stayed high for a few weeks, stayed safe for a couple of months--then my liver, apparently, began to "eat" my platelets. I was told the chances of having a pretty good remission from a splenectomy were about 66%--but since I was 63, when I had mine, the chances were lower than that.

Don't I recall that in England they do a test that tells if "the spleen is the culprit," in Steve's words?

I don't think tha tmy health has been negatively affected by not having a spleen--yet!

Karen R
15 years 2 months ago #6669 by
Replied by on topic Re:IGg blood testing
Yes there is a test in England - met someone from my State who went there and had it done, showed her spleen was the culprit so she had it removed, did fine for a while and down her count went again. I believe that test isn't offered/done here because it isn't really reliable.
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15 years 2 months ago #6673 by ggundel86
Replied by ggundel86 on topic Re:IGg blood testing
What connection is there between IgG levels and ITP and AI? My IgG4 levels were elevated and the doctor says thats ok. That was before I was dxed with ITP. When I told my rhuematologist I have ITP and I'm having joint pain and stiffness and so exhausted and she said "Oh?" and then said I must have fibromyalgia even with the IgG4s and ITP.

What info has your dr given you about IgG testing?
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15 years 2 months ago #6705 by DeeDee Marie
Replied by DeeDee Marie on topic Re: IGg blood testing
Hi SteveC,
I understand where you were coming from. I am now refractory for steriods (including Decadron), and my platelets are about 3000 (while in the hospital). They gave me an infusion of IVIg yesterday which did nothing and I may hold off another one today as It doesn't seem to be doing any good. Do you have any insight that might have made your platlets stay at "0". I'm wondering if we need to sometimes give our bodies a rest from all the medicines they keep pouring into us and maybe watch what food we are eating. And look at other factors. I'm not sure just what I am going to do just yet as my platlets may go down to "0" too. Are you able to keep your platelets up to a safer level with meds or by watching what you eat and not smoking or drinking?

Any insight you could provide would be much appreciated.

Thank you, and God Bless,

Diane (DeeDee Marie)
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15 years 2 months ago #6709 by SteveC
Replied by SteveC on topic Re: IGg blood testing
I/we never had any real suspects re 0. I was physically healthy and in fact perhaps the best shape in many years due to long term personal exercise. I drank very little, occasional beer/glass of wine every few weeks and a non-smoker.

Because I admitted @ 3 the only Rx I had was post Dx was 7 days of 1,000 pulse Steroid, concurrent with 4 days of Anti-D. After 30 hospital days count was 12,000 and discharged on 80mg daily steroid. Couple days later IVIg and count up to 142,000.

Approx 2 months after admission splenectomy and counts jumped to 550,000+ and settled around 300,000 over next 9.5 years.

All this is to say, no clue, no other identified health factors and no known trigger events or homeopathic or illicit drugs - completely clueless to this day.

So we're left with a personal perspective and how we'll handle "low" counts vs surgery to provide the hoped for resolution (I knew the uncertainly of surgery). When my only + response was to IVig (which is temporary) and having been @ 0 I felt surgery was the right decision for me. I wish I would have had a year of treatment before surgery decision but I knew 0 was a bad place and after 2nd opinion I went forward. That also means I didn't have a lot of Drugs pounding my body so I don't think "rest" and cleansing would have led me to a different decision. I don't regret the surgery because I've had 10 absolutely trouble free years (other than the monthly CBC). Fever management was the only consideration over the years and that never really concerned me - just something to stay on top of.

I'm not a "healthy" eater. Truly meat and potatoes upbringing, although I strive to watch the calories and manage my weight.

Right now I've relapse, dropping from 280,000 - 18,000 over 6 weeks so I don't know my future. I know you have a touch decision based on weak statistics which many don't agree with but it has to be your decision.

May you find a LARGE measure of peace and strength as you meditate your path.

Blessings to you and family

Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C