New diagnosis--is what I'm feeling from ITP?

I found out a few weeks ago that my platelets were low--around 65, 70. Doctor thought I had ITP, had me get an ultrasound then come in for a follow up and more bloodwork. That was yesterday. My platelets had dropped to 29. I've been drinking about two cups of coffee a day, before 3 or 4 p.m. because I start to get tired in the afternoon but today I tried to only have my morning cup since I'll be taking Prednisone soon and can't really have caffeine. And I am extremely exhausted. It feels like my head is ...almost lightheaded, but it isn't that. It's hard to read my computer screen because it tires me out, hard to make myself move and do things. The doctor wanted me to come in this week for my first blood transfusion but we couldn't schedule the appointments until early next week. Am I feeling this way because of my ITP or is this related to my depression and general anxiety? I'm so tired, I keep crying on and off, and I'm worried that maybe I should've gone in sooner to do the transfusion. I don't want my platelets to keep getting lower and don't know how fast they can decline. Am I just freaking myself out?

Update: I got it wrong and it's not a blood transfusion. It's an infusion (IVIG'ing). <--Proof I'm a noob. haha

Hi there.
While you wait for a really knowledgeable member to pop in, I can tell you a little bit about what I know.

Low platelets are a recognized cause of fatigue. That's probably not all in your head.

Second, blood transfusion is not a treatment that's given for ITP/low platelets. If what you're talking about is actually a platelet transfusion, those are given only in cases of extreme bleeding as an emergency measure to stem it. If you'd be given platelets in absence of such an emergency, the antibody activity already causing your low count might increase, making the low count problem even worse.

My advice would be to postpone any kind of blood or blood component transfusions until you get advice from a thoroughly ITP-smart MD.

Like Janet (Midwest) said, a transfusion does not make sense. One treatment for ITP is an INFUSION of intravenous immunoglobulin (IVIg) which helps raise platelets quickly (but usually for only 2-3 weeks). Could that be what your doctor meant?

Do you have any blood test results that are out of range, other than your platelets? Is it possible your doctor is transfusing you because you are anemic? hemolytic anemia can accompany thrombocytopenia in an autoimmune condition called Evans Syndrome. I am grasping at straws trying to make sense of this transfusion idea!

Oh! Yes, sorry, newbie here and I said the wrong thing haha. It's not a transfusion it's the IVIG'ing.

I've never had IVIg, my hematologist, at the time, told me she had never had anyone go into remission using it. There were/are some people here for which IVIg is the only way they can increase their count.

It's fine. We were all new at this once.
Keep reading here. You'll learn so much... I know I have.
The main thing I've learned is that doctors don't know everything - about ITP or anything else. It's best for you to learn enough that you can become a partner in your care instead of being dictated to. It's the surest way to avoid being overtreated or to get treatments unacceptable to you. Over-treatment side effects can be much worse than the effects of ITP alone.

Has someone told you you can't enjoy caffeine when on prednisone? I actually don't know if that's true or not, but I know I didn't avoid it while I was taking prednisone. I guess it depends on how much the drug stimulates your heart or not... I'm just not sure.

IVIG will probably raise your count, but it won't be permanent. It usually only helps for a few weeks at most, then you're back to square one. Don't view it as a long-term fix. It isn't. It would be wise for you to go up to the top of the page and click on the pink "Treatments" tab for a better understanding of all that are available. You may not need any of them soon, but you'll want to know your options before you get to that point.

Try not to fixate on what your count might do. I've given up predicting my own, because it invariably fools me.

The more you know, the easier it will be for you to accept what you have and learn to be okay with it.
Hang in there.

Hi. Going in sooner to have IVIG wouldn't have changed anything. It's actually better to wait to treat until counts are low enough to need it. All treatments come with side effects. IVIG is a pretty temporary treatment and usually only lasts a few days to a few weeks. It's not a good long term treatment. Is he having you do both IVIG and Prednisone? I'm not sure that both are necessary.

PS - I drink decaf. Just as good.

Yeah, he's having me do both--I assumed because the IVIG'ing was a lot more temporary. My count isn't super low. I was at 29 when he told me I'd need to come in for treatment. It went down from 73 to 29 in about 3 or so weeks, and I'm just starting to get the tiny blood spots but don't have any bleeding. I know nothing, of course, but my thinking was, maybe he wanted me to go ahead and do the two treatments to avoid having it get any lower and to see if my body will stabilize itself after that; although he did tell me that it could flare up again at any time, sooner or later.

If you do both treatments, you won't know which one you responded to. If a person is responsive to Prednisone, counts can shoot up in a matter of days. IVIG is a long infusion that can have side effects and is usually temporary, as we have said. It's normally only used when a person doesn't respond to anything else or in an emergency.