Splenectomy on 11/25/13 counts 100k after, now 24k

Was just wondering how many people out there had spleen out and numbers looked good at first then dropped. 11/25 counts 56k before surgery, 11/26 100k, 11/28 90k and 12/5 24k... IVIG's 12/6 & 12/7 counts yesterday 15k, re count on Monday 12/9 at 8:30am. Was just wondering if some people it just took the body sometime to get use to the idea of not having a spleen. And if the counts don't go up what was done in your case? Seeing new doctor on 12/12 at 1:30pm she has my records and hope she has a game plan for counts and iron deficiency...

335k today and it has never been that high..... feeling good, doctor lowered Promacta from 75mg to 50mg until I can see new doctor and was advised since boss came in also today with active temp not to go in. If his temp goes away today then will be good for work tomorrow. If it wasn't for just having surgery I would have gone in and just been very careful.

Why do people do that, have a temp and know they do and go to work or out in public....WHY!!!

Great news 335k is super! Hope your levels stay up

360k last week.

That's great news Amber! Hopefully, your life can go back to being less stressful, and to enjoy the holidays.

I am going through the simlar thing, had splenectomy done on 6/3/14. The count was 469k, week later 360k, two days later 230k and yesterday 183k. Should I be concerned?

Not yet. It could level out. If you get down to treatment level, that is the time to get concerned.

Two weeks ago 37k got another CBC today will fine out tomorrow my numbers.

18k today the only change was me stopping birth control. So I started it back and could it really be the BC?

Hard to say, Amber. Counts will fluctuate on their own, regardless.

Getting recount tomorrow to see if adding in BC did the trick.

Hope you are doing well Amber. Lets hope for the best!

Haven't been around for a while as I had rotator cuff surgery and ended up with a frozen shoulder (lots of pain!). p.s. Would never do this surgery again!!

Gong to get doctor to do a once over on me. Neck, back, legs and chest all hurt to the touch. This started yesterday glads in throat are swollen. But getting ready to head there now.. come on platelets and if I Ak coming down with something Abc will be messed up.

Count 39k this week better tthan last week but still on Promacta 75mg???? Added back in the BC, since I pretty much have to treat myself for now on. Thinking of going down to 50mg of Promacta and see what counts are needy week l. Worse case I have to go back on 75mg. Any thoughts??

Amber,

Why don't you wait a while to drop back down on the Promacta since you just had lower counts. Do it more gradually.

Dee Dee

Hi Amber

I've read quite a lot of your posts, but not commented until now - so this is just my tuppence worth

If it were me, I think I would want to stay on the same treatment and on the same dose until you were stable at higher counts. Thats the point at which I would start trying a lower dose. I think that playing round with things before that, you run the risk of treatment that is half working at the moment stopping working effectively - and you don't seem to have a lot of available alternatives.

IGood luck with whatever you decide to do anyway!

Ali

Been on Promacta for months now and it is suppose to keep you close to 50k, which I am not.

Then why would you want to lower the dose? 39k isn't too bad. Still safe.

No 39k is fine but the medication should keep above or very close to 50k. The rx company also States if not 50k ish within 6 weeks it isn't working. Don't want to take something that isn't working. The only change innthe last two counts was off birth control then got back on and counts went back up.

39k is not that far from 50k....the promacta does seem to be working for you and helping you stay in a safe range. Your counts were so low for a long time and now they are safe. You should talk to your dr before you decrease the dose.

I agree with dru. I can't think lowering the dose is a good idea while it is working so well. Over 30 is good to aim at, just as good as 50 for most.

I agree with the rest. It's not always a good idea to mess too much with the medication. You are doing good.

Amber,

I'm currently on 50mg of Promacta and 20mg Prednisone...I will be happy for anything above 30k with just Promacta. You should keep taking 75mg of Promacta. It's keeping you the safe zone, and that in my book is a successful treatment. You need a period of stability and I don't think you should lowering Promacta since it might mess up your count.

My doctors have been trying different types of steroid treatment for example, inyenctions and nothing worked. I have the spleen in 19cm large. My doctors say that I will make a Esplenectomy and that with this problem will be solved i sought information and got that taking out the spleen is dangerous and mostly does not work against the ITP! I also have portal hypertension, they made me a shunt spleenorelnal this would help me to upload my platelet but it didn't work. My question is, Can I live wirh ITP without treatment? I really reallu dont want the surgery because the way I see it it will not work! I've been reading and all I read is that the spleenectony works the first weeks and then the platlers cout just drop off! I have itp wince 4 years now and it never bother me I have none systompsI just bleed out a little from the nose just that! And Im a little concernd about rhe surgery. Can anyone pls help me. My surgery is schelude for a month! I had surgery last month My scar ins't heal yet! I am so tired! My veins hurts Anyone, I recive so many stiches daily! Btw sorry for my english, I usually speak spanish

Yes you can live without treatment just as long as you have no symptoms. Bleeding is a symptom, what treatments have you tried? I tried everything before getting my spleen out from chemo too steriods. Steriods stopped working before my spleen was removed, they work now so I try not to use them unless it is a must.