I have chronic low blood platelets, caused by my immune system destroying my platelets. Up to now we have used steroids to suppress the immune system when the platelet plate count has got too low but this time the steroids are not working and my specialist is recommending removing my spleen. Has any one any experience of this or advice? 2jen
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First Helper Jentoo
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replied January 5th, 2007
Re: Spleen Removal
2jen wrote:
i have chronic low blood platelets, caused by my immune system destroying my platelets. Up to now we have used steroids to suppress the immune system when the platelet plate count has got too low but this time the steroids are not working and my specialist is recommending removing my spleen. Has any one any experience of this or advice? 2jen


obviously this will be no real use to you, as it has been so long since you asked, but I figure i'l answer it anyway.

Just after I turned 16 I was diagnosed with itp. Instead of my platelet numbers being in the normal ranger of 150,000 - 400,000 they were around 5,000, and a few times during treatment got as low as 2,000.

We tried high doses of presnisilone (prednisone), 150mg per day for a while, but that did nothing for the itp and had nasty side-effects. We then tried intragam, which worked a charm for my platelets but is only temporary in effect and I had a reaction to it which meant we could not repeat the treatment.

Eventually we decided there was no other option but to remove my spleen. It was the best decision we could have made. That was almost 3 years ago.

It was done laproscopically, so I just have 4 small scars, and my platelets have been steady in the mid 500,000's ever since. Although this is above normal, it's not dangerously so, and just means I don't bruise or bleed very much.

I hope all has gone well with you, and that the if the doctors decided to go ahead with the splenectomy, it works as well for you as it did for me!

Cheers,

neejchee
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replied March 24th, 2007
Thank you for replying to my post, sorry to take so long to respond,. My condition is still responding to drugs so I haven't had to have a splenectomy yet but if it does happen I will not be as worried as a result of your experience. 2Jen
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replied March 17th, 2009
Hey
Hey jen..I have the same problem as you my platlet count is low and I am taking steroids (hate them) now they are discussing taking my spleen out. Your post was very helpful i would love to talk to you, share stories!!
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replied April 8th, 2009
splene removal
My 44 yr old son has been running low platelets for about 2 months. Prednisone helped initially but now they are dropping again and the Dr. is considering a splenectomy. Could this have been caused by a viral infection he had in January? What inoculations are required before removing the splene?
Peggy
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replied April 18th, 2009
Sorry to take so long to reply I don't go on line very often. I haven't had a splenectomy yet and am still controlling the platelet count with steroids. My problem is that my immune system is producing antibodies that destroy the platelets,the steroids (prednisolene) suppress the immune system to stop it doing this. What I am doing, with my consultant's support is to take 5mg and 7.5mg of prednisolene on alternate days but if I contract any type of infection I immediately up the dose to 10mg for the length of the infection.This seems to protect my platelet level keeping it at 70. Before any sort of infection appeared to get my immune system working hard then my platelets would drop to rock bottom and I would have to take really high doses of steroids to bring them up (with all the attendant side effects)and then spend a couple of months slowly dropping the dosage. At this level of daily dose I find that the side effects of the steroids are acceptable. I occasionally have to ensure that I lose a few pounds in order to maintain my dress size. I am using my dress size to control my weight. I hope this helps you Tamarapopo though I should probably suggest that you discuss varying medication levels with your medical provisor first. on a purely vain level one of the other things that my immune system does is to cause red rash type marks on my legs, painless but unsightly, and while I would not take an increased dose purely to get rid of them it is a nice side effect of a cold that they disappear for a while. Peggy if your son's condition is immune system related like mine then a viral infection could easily have caused his platelets to drop and I did have three innoculations when we were considering removing my spleen, flu, meningitus and I don't remember what the third one was. I have a haemotologist consultant looking after my platelet level but found that for the wider view of immune system disorder the rheumatologist consultant that I saw 3 years ago was most helpful. perhaps your son might find a referral to a rheumatologist helpful. JEN
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replied July 10th, 2009
ITP, Spleen Removal
My platelets have been around 60,000-80,000 for years. A few months ago, after winter with cold/sinus and on antibodies, etc. they began dropping to 40,000, 20,000. My doctor diagonsed me with ITP and started me on prednisone and 4 days of IVIG treatment, which raised them to over 200,000. A few weeks later they started dropping again to around 80,000 and I received a 3 day treatment of IVIG. side effects of prednisone are rough for me and I decided to get my spleen removed. I'll post the results after the surgery. One problem that I think is connected is the disconfort in my knees and lower legs-not painful-but they feel stiff, frozen, not wanting to move. I do plan to consult a rheumatologist to seek help. A close family member was diagnozed with TTP about 15 years ago, also received prednisone and subsequently had her spleen removed and doing well. Any other helpful information will be appreciated. VEL
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replied July 22nd, 2009
how long are you in the hospital after operation. What about recovery is their pain?. I have only one surgery in my life dislocated and break of arm and wrist whidh became infected at the time. The pain was out of this world.

The length of time in the hopsital and will there be lost of pain after sugery.
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replied August 2nd, 2009
I was diagnosed with ITP at the age of 16, and have been through lots of treatments including Prednisone (corticosteroids), WinRho and IVIG (blood fusions), and I basically said I draw the line at having a splenectomy (removal of the spleen). My platelets were pretty decent with Prednisone, but without them I easily went to 10,000 or lower. Honestly, I got so sick of trying to manage weight-gain (which seemed inevitable with the constantly high doses of Prednisone) and seeing what Prednisone does long term to your body (such as liver damage and cause osteoporosis). I really felt like I was just helping kill my body in an attempt to save it.

One thing that helped me a lot, and may help, as someone with ITP or as a loved one of someone with ITP, is the platelet disorder support association. THis organization was started by a woman with ITP, and it really was a lifesaver during the first years since my diagnosis because of all the information and resources available. The website is great.

I also want to give a word of advice, I had taken Prednisone, done different blood fusion treatments, and was even at the risk of having my spleen removed until I started using natural medicine. Now, I'm not saying that the Prednisone didn't work on occassion, and I'm also not saying every natural medicine works because I tried a lot of different ones that didn't, but then I found Transfer Factor. I currently take Transfer Factor and have been in remission since I started taking it two years ago. It is an amazing product, and if you would like more information feel free to write me. Transfer Factor boosts your immune system by %437. Usually as someone with an auto-immuen disorder, I would have said no way, but Transfer Factor actually works kind of like a thermostat, regulating your immune system activity and teaching your immune system how to do things correctly, therefore, truly alleviating ITP by re-teaching your body that platelets are good and not a free agent. Best of all - no crazy side effects Smile
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replied March 24th, 2010
ITP: Spleen Removal
I was diagnosed with itp in october of 2009 and have been varying my prednisone for the whole time... just got a new doctor and we tried to up the dose but the levels did not get as high as when i first started taking the pills now the doctor wants to take out my spleen, I am unsure of what to do. I dont have the money to pay for the "natural" stuff. just wondering how long the recovery time is for the surgery...
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replied March 24th, 2010
I don't know how long the recovery time is from the surgery. It depends on whether you get orthoscopic surgery or not, and also just on how long your body takes to heal, and whether or not your platelet count will even get better with the surgery. I have heard of people for whom the surgery worked for a few years, only to have their liver start destroying their platelets later, and be back at step one because your body is still producing the anti-platelet antigen which attaches itself to the platelet, and sends the message to your body to destroy it.
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replied March 24th, 2010
ITP - Spleen Removal
Thank you. I have some time before my consult with the surgeon. I am trying to find as much information as I can before I start taking out body parts! Anymore information from anyone or links to other sites with information would be a great help to me.
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replied April 24th, 2010
When I found out I had ITP, last October, my platelets were at 1,000. I had IVIG and prednisone. When I had my CT to see if my spleen was enlarged, they found a kidney mass. So we needed to get my kidney out asap. First we had to get my platelets up. IVIG, prednisone, Rituxan(chemotherapy)--didn't work. A month after my ITP diagnoses, I had a splenectomy. My cound was 29,000 after an infusion of Win-rho. The morning after i was at 250,000. I peaked at 900,000! I am now in my 500,000's almost 6 months after.

When I had my consultation with the surgeon, he said it had an 80% chance of working....pretty good:)

Good luck!
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replied July 23rd, 2010
I'm not sure if what i had was ITP it is certainly very similar in that I get a bug and my immune system killed the bug then my red blood cells then the bone marrow would stop. Had it all my life on and off and used to use steroids which worked but it would come back when off them and the side effects to the steroids are awful. Tried other treatments like Ritux, cyclosporin, immunuglobulin amongst others until finally I had my spleen out just over a year ago. I won't know if it has worked for a couple of years but so far so good.

The operation itself to remove the spleen was done via keyhole, I went in on the Sunday night had the operation Monday morning and went home Wednesday. I went back to work 4 weeks after the operation (I tried at 3 weeks but was shattered and my job isnâspam�t vey physical)!

The scarring is minimal. The spleenectomy is kind of a last resort really I decided Iâspam�d rather that then steroids all my life but Iâspam�ve heard mixed reviews of the spleenectomy working. I did have various lengthy scans before hand to ensure my spleen was the culprit with the most uptake of red cells before it was removed.
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replied October 6th, 2010
Hi, Look taking ur spleen out will save ur life. But personally if i could take it all back i wouldnt have let them. I have had nothing but problems since they removed my spleen 5 years ago. I had ITP the rare one.
A free clinic saved my life. And as far as bleeding goes. I still bleed more then i should and my platlets are fine right now. I have had unexplained illnesses and pain every since. neuropathy in the legs, feeling weak and i cant hold a job or take care of myselve on some days. Stay strong. Some people have no problems after spleen removal. And I have a big incision. And got a infection where they took it out and wore tubes in ribs for 2 months. I am looking for answers myselve.
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replied October 29th, 2010
Hi, my aunt is having some health problems were she has been haveing her platlets low all the time.She was reaceantly in the hospital becasue they went down dont know exactly how much but low. She had also a minor strock. The doctor has told her she needs to get her spleen removed i would like to know more information on this. Like would it be worth doing or just to leave it as it is she heard she would have some side affects can u please let me know what those would be and if its best for her or not.Please let me know as soon as possible becasue she will be haveing surgery in a week.Thank you
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replied December 14th, 2010
I have recently just been diagnosed with ITP as had bruising all over the body. My platelet count was 3000 and was admitted n prescribed prednisone. This brought my platelets up to 150000 range. But as I weened off gradually from 90 mg to 20 mg platelets dropped to 10000 and went back to 90 mg but now platelets hovering still at 4000 after taking 90 mg for a week. I am now just waiting to see what my internalize suggests but just recently been having pain in my spleen area. I found this forum and thought I would post to see if anyone has suggestions as prednisone does not seem to be working and side effects long term seem to be too high to consider continuing on that root. Any possible long term side effects of removing the spleen?? As has not been suggested by my doctor yet but I am seriously considering it as an alternative. I have read a bit about natural therapy anyone try this method and found success long term??
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replied January 18th, 2011
Keara123~
I've had ITP since 1994. I have had problems off and on with ITP since that first time when I dropped to 1000. I tried natural herbs for several years with wonderful results - no ITP issues. However, starting January 2009 I had severe problems. I was given all kinds of drugs from prednizone to IVIG, to 2 treatments of WinRho. My platelets would jump up some but then crash back to 1000. My doctor finally convinced me to have my spleen removed. My platelet count did not jump up. One month after surgery, my count was back at 1000. I went back on steroids and was miserable. After 7 months I stopped taking everything. My count was up at the time but dropped some. I have been good since then until the first of this year. It looks like I'm having problems again. I don't usually get sick but since "losing" my spleen I have had bronchitis 4 times in a one year period. Plus many colds and sinus issues. My neighbor had ITP for less then a year and had his spleen removed. Everything has been great for him - count high and not sick. There is no way to tell what your outcome will be. I wish you the best of luck. I wish for all our sakes there was a cure!
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replied March 12th, 2011
Spleen removal
I had a splenectomy 21 years ago. I had a car accident but removing my spleen saved my life. I had multiple injuries and was in hospital for months. I was 29 at the time and now 51 and can only praise trauma surgery doctors. I have had a relatively healthy life with a few accident related problems in the last couple of years. If you need your spleen removed do it! I have a massive scar from sternum to below my navel and I am proud of it! I have never had to take antibiotics on a regular basis and have a pneumococcus vacine every five years. So far so good!!!
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replied April 3rd, 2011
I've had low platelet count since 2005.have tried steriods,also IVIG treatment.so tired of all this .recently my hematologist suggested removal of spleen.Expecting a call from surgeon soon....wondering if this is the best choice .have read through this forum and found it quite informative...continue to post ,thanks
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Tags: spleen, chronic
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