Spenectomy.....Drugs.....Do Nothing...Hmmmm

Hello Everyone! It's been awhile since I've posted to the board. Believe it or not, I think the Adrenal Glands are FINALLY kicking in yes! I"m starting to get a little more energy! :woohoo:

Unfortunately, the immune system is kicking in...which means the platelets are dropping off one by one. Friday's count is down to 63. According to my hematologist, 50 is the magic number for treatment! Yes, I'm on weekly blood draws and pray that I get my favorite vampire and not anyone else. He would like to take the spleen out. I'm all right with surgery and also know that I'm pretty close to 40...the age where the success results drop. I'm thinking that I'm a bleeder. (Just had a blood draw today for thyroid and filled up my gauze pad.) Also getting racked with headaches/migraines as my numbers drop. I'm also starting to bruise. Let me drop another 10 platelets and I'll bruise like something fierce!

What is everyone's thoughts on this? Yank the spleen, see how that works then move on to drugs if it fails. Save the spleen and go straight for the drugs. Do nothing...which worries me a bit after my gauze pad and all the darn headaches...that and future bruising.

So what are your thoughts?

Thanks much for the feedback!!!

Hello. First off, I wouldn't worry too much about the blood draw and the gauze pad. That can happen to anyone who has a bad draw. That wouldn't be indicative of a bleeding problem to me. Are you having nose bleeds, blood in urine, blood blisters? I'd be more concerned with that. What about petechiae?

Have you only treated with Prednisone? If so, I think I'd try other options before getting the spleen removed. Whether or not it is successful is only part of the problem.

50 is a high number for treatment, but all doctors are different.

There are some other causes for migraines, and I think I might see about having that checked out. One of the causes can be APS (Antiphospholipid Syndrome) and low platelets is one symptom of that. Some of us have had the antibodies and if that is the case (which it may not be), splenectomy might be the wrong move right now. What has been your lowest count?

Save the spleen. What is the rush to have irreversible surgery, before trying other treatments?
I'd be looking for a second opinion.
63k? Heck, I can't remember when my count was that high. It's been a few years. Hope it stays that good for you.
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Hey guys!

Thanks for the replies!

Sandi:
It was weird to have a full gauze pad for the first time! Esp since I've had so many draws since march! Nothing like pulling the tape off the arm and going Dude...where did all this blood come from! So far, I've had mouth sores when i dropped from 130 to 85 earlier this month. That was also when I broke out into that rash. The ones on my outside thighs looked very close to petechiae. Which i have a funny feeling that the two were related. Nose bleeds won't happen until 55 and under (or so that's what happened when first diagnosed) Blood in urine won't happen until that point too. The headaches started when i dropped from 117 to 63 this past week. With both drops, I knew the number were going to be low due to what I was experiencing. Yup, I'm listening to my body.

yes, I was treated with Prednisone and hated it with a passion. I was ahead of the game because a couple years ago, my dog was on it and already knew what to expect for some of the side effects. Think I was on it for a total of 3 months (weening process too). Even then, the body told me that I was taken off too fast.

My lowest count was 27 in which they put me on Prednisone and my count jacked up to 132 in about 1.5 weeks. My counts peaked out at 181 and since then has been a slow decline as the immune system is waking up.

APS Hey? Is that a simple blood draw to test for that? I'll have to google that. The hema will just love me again for doing that...NOT!

What would be a good first line of defense if i skip the spleen removal?

WeirdJack:
That's why I'm here. I want to make the best decision before getting sliced. I'm curious what others have done in the past and whether or not it was a success. 63k is just this weeks number. The effects of prednisone is wearing off and the immune system is kicking in. Last week's number was actually 117. I have a hunch that I'll drop again this week. Good ol weekly blood draws!

Everyone is different (and ITP impacts different people differently), but, with your counts, I would have looked into other treatment options before trying a splenectomy. Splenectomy has helped a lot of people over the years, but, it is just a treatment, not a cure, and comes with its own set of pro's and con's. Even with your lowest ever count of 27, I would have tried the other treatments first.

I'm not saying your counts shouldn't concern you, although 27 is a darn good count in my book. Not as high as you would like, but not really into the danger zone yet. Your counts may or may not be headed lower, so I think you are doing the right thing to ask, now, at this point -- what's next. I just think there are a lot of others options for "what's next" -- Rituxan, Win Rho, Promacta.

Yeah -

I vote keep your spleen and try other treatments first.

If you can try to save the spleen and see if your haemotologist be willing to try alternative courses of action first.

I do not mean to worry you for each case is very different, I had my spleen removed back in 1994 because my count raised to two or three after a session and be back down to 1 before next day. This happend for 6 weeks and splenectomy was the next option. I was told it would never happen again and I went away 100% believing them.

18 month later the rash reappeared and to cut a story short I am one of those even rarer people that the spleen grew back. It can do if they leave tiniest particle possible:-} that was fine and there after though around every 18 month or so I would have ITP but ws fine with it because for me it was just like having a week's holiday in hospital. Then I haven't had ITP for 8 years but in between time through not being given sufficient advice about the splenectomy I contracted Phumoccocal meningitis and 18 later from that developed Septic Shock - Stage worse than Septicaemia and literally just survived.

This last two week I had a platelet drop which I think I found out through pure chance but am being monitored. The local A&E found out it had dropped to 10 and called me back in and it gone up to 37. Once they were convinced it were a platelet drop episode they very quickly diverted me to my haematologist:-} But that is not answering the spleen question.

If you can, keep it. If you can't make sure you get full information and don't learn the hard way like I did. I am now on Penicillin twice a day for life. That has its own issues to be aware of. I hope I haven't scared you but allowed you to gain a fuller picture of what to be aware of and yes we can survive without a spleen but there are health things you need to be more than aware off

63,000?? Dude, share some with me!!Mine float around and below 20,000. My latest oncologist tows the line to NOT treat until 10,000. Save the spleen!! Meds u can tapr off and try new ones when they are made down the line. U only get 1 spleen. hang in there!!
Arnold

Seriously go NO TREATMENT!!, mine were around the 5 mark for the last 2 years, and i have lived a great, healthy life ( im 19 and no different to anyone else my age) i have had itp since i was 11 and have grown up happy, healthy and with great grades.
i have NEVER had treatment and they have been as low as you can go! but it hasnt stopped me, sure its made me more careful then any other kid, but at least i haven't spent my teenage years in constantly in and out of hospital.
My platelets are now at 220! best they have been in years, just happened magically but if they went low again i still wouldn't have treatment.
Trust me its the best way

Take care

Seriously.....When considering doing nothing at all........
Bear in mind that the chances of 'Chronic ITP' just going away by itself in a 40-year-old are quite slim.
'Chronic' by definition means that the disorder persists unless treated. Although, 'Acute' ITP is apt to "just go away" by itself.
Do nothing? Been there, done that, and sincerely regretted ignoring my doctors and ITP for a year. Sure, many of us have lived over the years with counts under 10k. Heck, I'm still alive.
However, if there is a treatment available which works for an individual, it's unwise to do nothing. It's good sense to get any treatment which you can tolerate and afford for 'Chronic ITP'. It can be rather serious and...well...'chronic'...for those of us who are well out of our teens.
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