New to this forum and ITP....

Hi everyone,

My name is David and was diagnosed with ITP two months ago. The first signs I had was a lot of bruising, and red dots all over my body. Then at work I got a good pinch on the wrist from some material that I was carrying and got a hematoma. So I talked to my doctor and he took a blood test. A day later he called me and told me to go to the emergency room because my platelet count was 6k.

I've been on Prednisone ever since, with slow results, until recently. My counts got up to 50k, and then my doc started to taper the Prednisone. I/ve been taking it for 6 weeks now. At first I had amazing results! It seemed the more I tapered the higher my counts were getting. After being no higher than 50k for over a month, I actually got to 92k.

I started thinking that maybe it will just go away. I'm down to 20mg of Prednisone a day. Counts have started going down. Currently its at 76k. I went from 92k to 76k, in a weeks time, and I'm feeling baffled. I'm bummed out to say the least.

Just needed to get it off my chest. I don't want to share how I feel with my family because they are already worried enough. So, besides being depressed, (which unfortunately I was diagnosed with severe depression several years ago, and have been on medication for that.) I'm just kind of at a loss as to what is going to happen next. I'm tired of the weekly CBC, the missed time at work and the extra bills.

I was so sure that it would "Just go away".

David.

David:

Hello there. Everything you are feeling is normal. We've all been there. I did the same thing - came here to talk instead of talking to my family. Mostly because I didn't want them to be troubled with it and just wanted my home life to be normal. It can be taxing on the families.

What usually happens is that if one treatment does not work, you move on down the line until you find one that does work. This can take some time and requires patience. Most people, eventually, find something that they can tolerate and keeps counts up. Initially, the goal is remission. If that cannot be achieved, the goal then is to maintain safe counts - anything over 30k. Normal counts are not necessary unless you lead a very active life.

The CBC's and office visits will slow down. They are always frequent at first. Soon, it will not be necessary to see the doctor all the time and you should be able to just get counts at your leisure. Those will spread out too as time goes on.

As for ITP going away - that usually does not happen with adults, but long remissions are possible. I treated off and on for 7 years and ended up with a remission that has lasted 7 years so far. I never thought I would get here.

ITP is scary at first, especially when they scare you with the initial "get to the ER" phone call. In time, you and your family will calm down and it just becomes something that you have to manage in life.

In the meantime, read the posts and become as knowledgable as you can. It will help in the long run.

Thanks for replying Sandi.

I have been reading a lot of the other stories here and it has helped a lot. I will try not to concentrate on the numbers anymore. I also learned that I could be doing a lot worse. Hopefully things will work out fine for me. I feel really bad though for some of the other people here. I'm almost ashamed for even complaining. Reading the other stories and seeing some of the worst case scenarios has humbled me quite a bit.

David.

Other than those with severe ITP, most people find it to be just a pain in the butt. Hopefully you will get to that point too. Have you read the Excellent Advice sticky on the top of the Newly Diagnosed section? That can be very helpful.

Hi, I spend a long time on Prednisolone. I hated it, but in terms of platelet count it was the best of all treatments for me, the effect just never lasted after tapering.
A lot of people don't need to go further than Pred to achieve remission - I hope you're one of them!

Prednisone seems to be working fine for me. It seems the "sweet spot" is around 40 mg. a day. I got up to 92k. The Doc is trying to wean me off though. When I got to 20mg. they started dropping again. Down to 76k. So he told me to stay on 20mg, and to stop decreasing my dosage. So, tomorrow is a Lab day. Wish me luck! My lowest of lows so far was 6k. and my highest so far is 92k.

ITP in itself isn't such a huge pain. It's the meds that kind of suck. I get tired really easy. So coffee and soda get me through the day. My job is really cooperative with my "special needs". Since I work in a cabinet shop around LOTS of sharp objects! I get cuts and scratches all the time. Those are easy to take of. It's the hematomas and bruising that gets me worried sometimes. Or if I bump my head on something.

I'm learning to move around more carefully, but sometimes I forget that I'm sick.

Knowing that prednisone produces good counts for you is a great first step. You probably won't want to take it long term, so once you figure out your "sweet spot" have a chat with your hemonc about trying some other treatments. There are many available that lack prednisone's unwanted side effects. But, no matter what, in a pinch you know you can always go back to prednisone if your counts tank.

Everyone is different; for me (and for many) counts over 30 are great and rarely produce bleeding. I don't modulate my behavior at all at or above 30 (or even lower, really). You will need to work out for yourself what makes sense, but realize that you do not need "normal" counts to do many activities, even physically demanding jobs.

Keep educating yourself and take it one step at a time -- that's the best thing you can do. Hang in there.

Prednisone really isn't that bad. I know the long term affects are serious though. So far Prednisone does work for me. Ive been slowly tapering off of it and am now down to 15mg. a day. Starting Monday, I go down to 10mg. a day. My counts have been up and down like crazy.

Last week I was amazingly up to 130k.!!!! Today my count is 85k. The week before last was 76k. Talk about a roller coaster ride. So the plan is to slowly wean off of Prednisone, and see if I go into remission. Hopefully my body will maintain a safe count without meds. I guess if I had to stay on a low dosage for awhile I wouldn't mind. I can think of worse things than that.

David.

David - I've been on Prednisone for 7 years straight (mostly 5 to 15 mg's a day), and on high doses a few times before that. SO far, I don't have any long term side effects, but I know that will catch up with me eventually. No short term side effects at all. Having another autoimmune disorder, I actually feel better taking it. On bad days, I might take 40 mg's and don't even notice it anymore.

You really don't want to do that long term for ITP though. A few months is typical.

I was diagnosed with Itp six months ago. Count was 6. Put on prednisone starting at 40 mg which pushed the count to 280. I thought I had escaped. But when I tapered off the prednisone my count dropped back to 6. . I'm back on the prednisone but started on 2omg. And currently on 15mg: count is 35. I'm not a bleeder and anything above 20 is good. I'm praying that when I come of the steroids this time that I'll maintain a count of 20 at least. Failing that the next step will be a spleenoctomy. Which I really, really want to avoid. I'm hoping to haven the indium scan to see where my platelets are being sequestrated in the body before deciding on spleen removal. My doctor is not happy with using other alternatives such as rituximab: side effects. I'm attending the uk Itp patient conference on Saturday to get some more perspective on where I am. I've not reacted well to prednisone. Severe insomnia. But 15 mg is infinitely better than 40 mg. Itp is an individual journey so I pray that this is a transitory journey for you.
Abuisa

Several of us here are attending the conference too. We have no way of identifying each other though which is a shame but maybe we'll spot some others in the crowd.

Have you heard about the new idea of having certain hospitals as centres of excellence for ITP? The list of those taking part is at www.ukitpregistry.com/itpforum/centres.htm so if you do want to try other treatments rather than go the splenectomy route it might be worth changing doctors. I attend a hospital on that list and am using the new drug romiplostim with good effect.