ITP found me....

Hello, my name is Chris, 20 years old. My work held an annual health screening, low platelets (20) showed up. Just in time too, by the time Monday (12/19/11) morning rolled around my count was at 4. Spent a night in the hospital and released at 114, put on prednisone, 2 days later I had dropped to 60. Yesterday i was at 43. Prednisone goes up, platelets go down. Doctor doesnt want to explore too many different options only being a few weeks in. Thats how i found out of my ITP.

Welcome Chris. How do you feel? Do you have any bleeding symptoms? Many of us live with low counts. Read everything here! Your doctor sounds cautious which is great - some doctors here throw everything at a person who is doing fine and might actually resolve on their own.
Erica

I feel great, nothing major, bruises havent left, petechia is slowing going away. I work in a machine shop so i have band aids, tape, and super glue all over my hands lol. Nothing out of the normal feeling wise, just the bruises and the lovely side effects of the prednisone (60 mg/day...for this week)

Interesting how you got a heads up just before the crash. Too bad you have to deal with ITP but a couple things are positive- that you are young and you had no active bleeding at 4K.

Yes, prednisone is intense. I was practically psychotic at high doses, the noise in my head was so loud when I'd try to go to sleep. Not everyone gets that fun side effect thank goodness! Good luck to you, hope it resolves!

Chris, when you were in the hospital, did they try anything but prednisone? How much prednisone did you start with?

I have found it useful to keep a table with my counts, the amount of pred or other med, the date, of course.

Yes. They initial gave me 3 bottles of globulin and several injection of steroids. I cant remember the name. I did not get prednisone until i was released. 60 mg. 2 days later they dropped the dose to 40. A week later 50 and im currently on 60 again. Next draw is this wednesday. I have several questions for the doc this week and feel more prepared after reading on this website.

Welcome. Sorry to hear ITP found you. ITP is quite a
Rollercoaster" ride!! Many ups and downs. Prednisone did not do much for me. Counts raised a bit but then dropped as dose was tapered. Rituxan is what has worked for me so far.
We all know what you are going through. This is a great place to ask questions and for support. Be careful in that machine shop!!!!!

Just got back from the doctor, my count last week was 42, at 60 mg/day prednisone. today it was 40, he upped my dose to 120mg.......is this normal/safe?

One strategy is to double the dose if it doesn't work well so it's fairly normal although many doctors don't actually do it. I'd think that if your count doesn't go high in a couple more weeks then it's not going to. If it were me I'd then ask to be weaned off and try something else. Good luck on that high dose.

120 mg's isn't unheard of, but it's rare. Usually the dose is based on weight. The highest I've ever had is 60 mg's.

I'm with Ann - if you don't see a response that you are happy with (such as normal counts in the next two weeks or so), I'd ask to be tapered right then. It wouldn't be worth it.

Counts in the 40s sound pretty good to me! I know my own doc would not raise my pred level at all if I were hovering around the 40s. But you haven't been treated very long yet--maybe the doc thinks he can get your counts up to the "normal" range and keep them there. You haven't mentioned any averse reactions to the pred.

I think 40s sound pretty good, too. And, there's always the risk with doubling up the pred level so high, that you might crash when he tapers. Sometimes you just need your body to adjust to the prednisdone for a while. You platelets numbers are changing all the time. One time I had my platelets checked in the morning and they were at 12--later that afternoon they went to 31. You just never know.

Good luck to you and hope they stabilize soon.

An update... ive been on 120 mg of prednisone for the last 2 weeks, counts were 40 a week ago and 32 today. The doctor has cut me back to 60 mg and talked heavily about spleen removal. He wanted to talk to my family doctor about starting the immunization process, my family doctor is strongly against the spleen this soon. ( only had itp for a little over a month). The oncologist is leaning strongly towards the splectemony, i get the feeling that he isnt a fan of rituxan and other drugs. when i brought up rituxan, he explained a few risks. So im kind of stuck between the 2. I want to hold off on everything as long as possible, but both doctors are comfortable with levels in the 30's. Im fine with 30's as well, i guess my biggest concern is that i dont want my spleen out yet (at all), and i dont like the possible fatal effects of rituxan. However im willing to do what it takes.

Far too soon to consider splenectomy. Stats say that 20% of adults will have acute ITP and recover in the first 6 months to a year. Rituxan is a bit heavy duty but there are immunosuppressants and other things to try if you don't want to do that. Could you get another opinion with someone who treats the non-malignant blood disorders rather than an oncologist?

I agree with Ann; I think it is far too soon to consider splenectomy. Once it's done, it is done forever. I would be comfortable with counts in the 30's along as you don't show any serious signs of bleeding. I would also go for a second opinion with a very good hemo. Sometimes they can be very calming to talk to; they are use to ITP.

My two cents:

For once, I agree with the GP. That's unusual.

Your hemo is only offering two options. Those are the only two that were available in the 1950's. Might be time for another opinion. Believe it or not, not all hemo's are up to date with ITP.

I agree that Rituxan is a heavy duty treatment, but it is rarely fatal. Splenectomy also has a long-term mortality rate.

Prednisone isn't doing much for you. I'm glad the dose was lowered.

You have other options.

Sorry for being so blunt. Occupational hazard and too many years on this Forum.

Im going to push the spleen off for as long as possible. Still not sold on the rituxan either. What kind of "list" could be a protocol to follow. Obviously prednisone is the first, but is it danzanol, or promacta next before jumping to the last resorts? I see my hemo again tuesday, he said something about ivig then depending on the counts that day. I havent had a chance to search around the internet yet, but if anyone knew of an itp specific doctor around St. Louis, mo i would be greatful.

Well, that's a tough question. There really isn't a certain order. It all depends on what result you are trying to achieve.

I'll try to summarize them.

IVIG - this is a good rescue treatment, meaning that it can get counts up when they are very low and a person is in a semi-serious situation. It does not usually last more than a week or so, so spending a day hooked up to an IV for a short term result is questionable. It's expensive and time consuming. Some people have nasty side effects (severe headache, feeling flu-like) for a few days.

Danazol - this treatment can take a long time to work, and does not work very often. If you really want to get counts up faster, this wouldn't be a good choice. Side effects vary from person to person.

Rituxan - expensive, but if a person responds, they can achieve good counts that last, on average, a year. Some people get more time and some get less. There are four infusions that are given once a week. They take between 4 to 7 hours each. Most people have few side effects. Most side effects occur during the first infusion and are controlled with meds like Benedryl and Solumedrol. Most find the infusions uneventful and sleep through them.

N-Plate - this is a maintenance drug, meaning that you have to keep using it to keep counts up. It is used to attain safe counts (around 50), not normal counts, although that can certainly happen. Risks include blood clots and bone marrow reticulin. It's a weekly injection.

Promacta - also a maintenance drug - once a day pill. Goal is to attain safe counts...risks the same as N-Plate.

Decadron - another steroid more potent than Prednisone. It is usually taken for four days only and side effcts can be wicked for about 8 days. Some people respond great and experience a fast drop after stopping the drug. Some people maintain counts for a long time.

Immunosupprssants - Imuran and CellCept. Take time to work but can keep counts up when a person is responsive. Side effects vary - mostly nausea and fatigue.

Chemotherapies - such as Vincristine - absolute last resorts - rarely work and can have permanent side effects.

None of the treatments are guaranteed or side effect-free. There is no magic bullet. A lot can depend on the persons insurance coverage, income, lifestyle and personal preferrence.

What happened to Anti-D otherwise known as WinRho? It used to be very popular here but now nobody seems to use it. It's a 5 minute intravenous push with remission for some that can last a long time.

Maybe you could go through one of the teaching universities to get a referrel. I was able to get to see a doctor at USC (California) and get a second opinion. I felt a lot more comfortable after seeing him.

Ann, WinRho [Anti-D] is what put me in another "remission" over 8 years ago - would I use it again, you bet! I would use it again before any of the treatments Sandi mentioned!

www.pdsa.org/treatments/conventional/anti-d.html?layout=item

I didn't forget Win-Rho. I left it out because it doesn't seem to be offered much any more. I think the black box warning about the deaths scared off a lot of doctors. I haven't really seen anyone mention it in a very long time.

Also, they pretty much stopped giving it as a 5 minute push. It's been an hour long IV for a long time in most offices.

I think ill ask about promacta before the others. Im not concerned about getting to the normal levels, i just want to get to a safe and steady level. Im comfortable with 30, no bruising or petichaie so far. Im more than prepared for my next visit, but i will make it clear that holding off the spleen is my main priority. Cost of treatments arent a bother to me, so if need be ill take the rituxan therapy, but again only if needed. Side effects, fortunately im doing good. Aside from mild headaches and seeing things, the prednisone hasnt been so bad, only gained 15 lbs in the past month, even at 120 mg. There is another test i have to do tomorrow to rule out acid reflux or some kind of stomache infection (cant remember the name). Promacta, and nplate are the 2 ill be suggesting the most to him next week. Depending how he feels about it could be a different story, regardless, hes not getting my spleen just yet. Thanks everyone again, this makes it easy to figure out which direction to go.

H. Pylori?

Lucky you for not feeling many side effects!

That's really good that you don't have many side effects. I'm also glad that you've been able to analyze your situation and come up with what's best for you.

Good luck to you!

You know there is a black box warning on Rituxan too because of deaths?


www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000388/#

Yes, H. Pylori....or so i think, they gave me the wrong goodie bag so they can try again tomorrow. The black box warning is what the hemo was talking about, i think. At any rate, ill do whatever it takes, i can take pain, anger, and being crazy, just to get back to where i can safetly do what i enjoy.

I think all of these meds can cause us some kind of illness or death; but, sometimes we have no choice but to try some. My neighbor says she got Lupus from Lipitor (her doc. kept uping the dose). You just need to take it slow and use your head on what the doctor wants you to take; it's your body and you need to look out for it.

What I was saying is a treatment was left out because of a black box warning - but a treatment was on the list and it too has a black box warning. As DeeDee said there is probably something bad about all these meds.

At the top left of the page under the PDSA logo you can click on Treatments - there you will see both conventional and complimentary

Chris you are going to do just fine - you are just over a month into this, I remember when I was a month along and it does throw you for a loop. What about Washington U Medical Center? St. Louis University Hospital?

Yes, Melinda, I know. Rituxan is still offered though. Have you seen anyone treated with Win-Rho lately or even takling about it? It is a shame because it was one of the easiest treatments there was (or so I thought). It was always first on my list of treatments to discuss.