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

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

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!!

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

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

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

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.

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 C7. 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