So many questions and anxieties

Thank you, Sandi. It's just frustrating when they start to go up, then drop down again. Even though I'm still in a good range, it's a bit disheartening.

I know, but that is perfectly normal. Many platelets are produced daily and many die daily. The body cannot keep up a perfectly balanced supply and demand. Platelet counts in people without ITP fluctuate too, they just don't notice or care if it goes from 250,000 one week to 222,000 the next.

Tamar once compared a platelet count to a bowl of alphabet soup. Every time you take a spoonful, you will not get the same amount of alphabet noodles on the spoon. It was a good analogy. Also, platelet counts are not 100% exact. Sometimes larger white cells sneak in there or smaller platelets are not counted. It's close, but there is a small margin of error.

Do doctors normally share and explain blood smear results? I'd really like to see mine and a "normal" one to compare. I'm really interested in learning more about the whole process and to know more about my specifics. I want to know about my antibodies and the size of my platelets, etc. Any thing else I should ask about or also read about to learn more? I read the newest article you posted, Sandi, and I understood about 5% of it. I've read other things here and there as well, and I feel I've learned a lot. But there's so much more to learn!

Taz..have a look at this. It's aimed at nurses who know very little about ITP..I'm a renal specialist nurse so being diagnosed with ITP was well out of my comfort zone. I found it very useful when I was first diagnosed. Anne

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Taz:

There is a lot to learn and the understanding of technical words will come in time. I'd guess that most doctors don't review blood smears with patients, but you could ask.

If you want to learn more about ITP, it helps to start by learning about the immune system.

How common is APS? Is this something that I should ask or be concerned about? Some of the stuff I've read on here has me a little worried. Especially since I get frequent migraines... But always have...

Sorry for all of the questions! I just start reading about stuff and then new questions arise!

I've read articles that state that approximately 33% of people with ITP also have APS antibodies. I have them myself. That scared me more than ITP ever did, but so far, no clots although I do take aspirin (when I remember). For some reason, protocol does not suggest testing ITP patients for it. I think it would affect treatment decisions (I know it would affect mine).

Anyway, if you have both ITP and migraines, it wouldn't be a bad idea to ask your Hemo to test you. He may, he may not. Mine kept refusing to test and years later I asked my Rheumatologist to do it. He did and the antibodies were elevated. There is nothing you can do about it until you actually have a clot (except aspirin), but it could make a difference if you need to treat.

Don't spend time worrying about it, really. It's not worth it.

Since Ellen also has migraines + ITP, we had the same thought as you. Had the test... no APS. It was worth having the test just to have one less thing to worry about.

I think it's a good idea to get tested. I don't get headaches at all but still asked for the test which came out negative. A few years later I asked for it again.. still negative. It's reassuring.

Well, I need some positive thoughts. My counts today are at 33,000. Ugh! I wish there was some way to control them I will get them again at the end of the week. And I see my hemo next Wednesday. But I'm just worried about treatment and want to avoid it. I just have lots of bruises now. And I'm really tired. No other symptoms though. I hate this rollercoaster that my counts seem to be on.

my count is 27 today and I'm shattered xx

Ugh. I'm so sorry!! What were they last count? Two weeks ago I was at 93,000 and now this. It's so hard to not stress over the lowering counts.

I think the thing is to figure out what scares and stresses you about it. Is it the treatment or the lower counts themselves? Either way, you will do whatever you have to do and you will get through it.

Try not to let a number dictate your mood. Look at the symptoms and how you feel physically. Those are the important things.

The treatment possibility is more scary to me than the low counts. It wasn't always this way, but it's gotten to this from my research. I actually feel better knowing that I'll most likely be fine, even if my counts get very low. I know there are treatments that will more than likely work for me. I just am worried about it getting to that point. I feel that all 3 of my options (ivig, anti-d, prednisone) have scary side effects.

All of the treatments do have scary side effects, but that doesn't mean you will have them. If you do, some of them only last a short time.

IVIG is so temporary that it's usually not worth the time and expense. Win-Rho can last a few weeks or months and most do fine with that one. I felt slightly flu-like but popped some Tylenol and went to work. Prednisone is the worst, but can work very well if you are responsive to it.

Why do you only have 3 options?

Those are the three first-line options my hemo recommends. I'd likely do anti-d, since I don't want to have the high doses of prednisone possibly affect my daughter while nursing. Plus, I've seen how the side effects of prednisone affect my father, who has many health issues.. and it's frightening. But the possibility of having complications with anti-d is also terrifying, however slim that risk is.

Taz:

Long-term Prednisone can be bad due to the side effects. When someone is on it for a few months, it's mainly only the short-term side effects that you need to worry about. I know those can be pretty bad, but you get through it. When I first started Prednisone, I was already stressed out from a demanding job and three kids. Adding Prednisone magnified all of it and I was a basket case. Once the dose got low enough and I thought about the prior few months, I realized that a lot the things I did were actually funny in retrospect. We used to tell funny Prednisone stories here and maybe it's time to do that again. It makes it all easier to take. The next time I had to go back on it, I learned to chill a bit more and not be so hard on myself. I laughed at the things I did and it was all so much easier. I know the idea of it is scary, but if it's not working out for you after the first time, you can move on to second line treatments and just refuse it from then on.

One story:

Years ago, I was on a high dose. My family came over for some holiday and we were having a cook out. My sister and I drove to the local 7-11 to buy something and I bought an iced coffee. When we were getting back into her car, I was so wired that I tipped my cup and spilled the whole thing in my sister's car. I was very upset and flung her car door open wider and it hit the car next to us. I apologized to the guy in the car and went into the store for paper towels. I asked the clerk and she pointed. I didn't understand where she was pointing and just stood there spinning around and flapping my arms, yelling, "Where, where!" Everyone was staring at me like I'd escaped from the asylum. I was horrified but later realized how funny it really was.

I did the high dose steroid thing twice in 1998 and didn't have any long term side effects. Prednisone is definitely not easy, but it does end eventually.

Ha ha! Thanks for the laugh I know that option may be necessary, but I'm hoping not. Keeping my fingers crossed that my numbers don't get much lower and that I can avoid treatment. Hopefully I only have these bruises and get no other symptoms.

Good luck. You might pull it off!

At the end of last week, my counts had gone up a bit, to 41,000. My legs look like they have been at war, but I'll take it,if it means no treatment. I go back to the hematologist Wednesday. I have many questions for him, since I've done lots of research and reading on here since I last went 3 months ago, knowing very little. Any advice on what to ask? I know I want to ask about a PTT, and also APS. I'd also like info on my platelet size, the type of antibodies, etc. Any other things maybe you have learned about that you wish you'd known early on? Thanks!!

I'd want to know about APS and have asked twice to be tested, negative both times. The rest of your list I wouldn't feel I needed to know. They don't test for platelet antibodies routinely and the tests aren't run everywhere so you may not get that one. It would also be expensive. Let us know how you get on.

Yesterday went well. I really love my hemo and his staff. They take so much time to sit with you and answer your questions thoroughly. And it's good to know he's the top hemo for ITP in this area. He has patients from out of state and even 2 from out of the country.

So, I had some more tests run yesterday to see what all is going on. I did get the APS antibody test, as well as a couple others, including Von Willebrand. I was tested for Von Willebrand before, but he felt that was too close to when I had my daughter and my hormones could have affected that test. Although, since I'm breastfeeding, they may still play a role in the test this time. If so, I will have it run again when I'm done. I think the symptoms I have and have always had even before ITP, and the way my platelets have been all over the place are possible indicators. So we will see what all of these results say.

As far as my symptoms and treatments, we will not treat until there is active bleeding. And then we will go through the pros and cons of my options to choose the best one. He did mention that he does not like steroids, but obviously does prescribe them. But he likes to do a bone marrow biopsy before treating. Is this normal procedure? He also said it's very possible my counts won't go low enough for treatment, but just hang out low enough to put me on edge all the time like lately Ha. I told him I'll take my legs covered in bruises if that means I don't need treatment.

He did not seem too concerned with my bruising. I told him I felt it was excessive for my counts. He said it may be a little, but that doesn't change anything for now. It's the active bleeding they want to watch for. I do think the VW is a concern for them, because I do seem to bruise even at over 50K. Not nearly like I do in the 30's, but still more than I should. I don't know if he is looking at other possibilities as well, if this comes back negative.

So, while everything points to ITP and they are calling it ITP, they are still cautiously looking at other possibilities. The only things I did not like hearing are...1.My slight risk for other autoimmune diseases and cancer and now a little higher due to ITP...2.The possibility of a bone marrow biopsy if I need treatment...and 3. I need to get my ena panel re-screened every couple of years, because I have Raynaud's, which is a symptom of lupus and my last titre was 1:80. Not even close to being concerned, but a good idea, given my history and current status.

So, I will continue my watchful waiting status and hope for the best.

It's great that he is monitoring you for all of those things. Many doctors do not bother to do that and blow people off. A little word of advice that I like to give anyone who seems to have a red flag for Lupus - do not go to tanning beds or spend a lot of time in the sun. Doing that can trigger Lupus quickly. You may never get it but if you have a predisposition and you trigger it, it's too late to change things. UV rays are the top trigger.

A bone marrow biopsy isn't necessary, but some doctors do them anyway. Protocol states that they should be done if the patient is over 60, does not respond to treatment or is having a splenectomy. You do have a choice in the matter but all in all, it's really not that bad.

I didn't know, and never heard before, that having ITP makes one more likely to get cancer. What did he mean?

Reading that would worry me if it wasn't for the fact that I've already got an increased chance of getting cancer because of having a primary immune deficiency and have got used to the idea but for others with only ITP.. well hmmm.

I'm glad you brought that up, Ann, I sort of blew over it. I don't think having ITP causes any cancer risks unless there are immunosuppressant drugs involved. Then the risk goes up the more you use them. ITP itself really doesn't, unless he was referring to the infinitesimal chance that chronic low counts for someone is really not ITP. I've only seen that happen twice here in all these years.

He basically said that if I have a 1% chance of having another autoimmune disease or cancer, my risk is now closer to 2%. I took that as my risk is slightly higher since I have ITP. He did say the risk is still very low.

I am a little concerned about lupus. I used to spend a lot of time in the sun. Not so much now, due to the little ones. I'm also hopeful my aps antibodies come back negative. That one really scares me.

I'm definitely glad we're looking at everything that could possibly be an issue. But it's also a little unnerving.

Taz I would ask your doctor what your chances are of having cancer if you didn't have ITP.

And then I would ask him why ITP would increase my chance of having cancer by 1%.

Never had a doctor tell me that and I've been seeing doctors for years thanks to ITP - oh my gosh, just hit me it's 26 years very soon.

Taz:

The chance of another autoimmune disorder is greater than the chance of acquiring cancer; quite a few people here have more than one autoimmune disorder. Cancer and ITP are not connected in any way. Many people only have ITP though and never develop another disorder, so you may not either. If you do, you will cross that bridge if you come to it. Even if you do have APS antibodies, that does not mean you will have a clot. I've known for 9 years now and have not had a problem yet (knock on wood).

In 1989, I had a doctor tell me that a result in my lab work could mean that I would be diagnosed with Lupus one day. I kind of shrugged and forgot about it. I wasn't symptomatic or diagnosed until 2006 (other than ITP in 1998). Point is, don't spend time worrying about something that may never happen. It only becomes a black cloud hanging over you.

Sorry this all sounds so jumbled. I only had 3 hours of sleep last night.

Thank you Sandi. As concerning as all of this is, since I am only 36, I am also trying to look at it as a blessing. If something turns up in a test, then I'll be able to be more proactive. I may possibly catch future issues due to ITP. This has definitely already made me more aware of things than I was and has made me want to change my lifestyle a bit, for the better.

And as for the cancer, what my doctor said really didn't alarm me. I'm a very anxious person by nature, but I've always looked at cancer as one of those freak things that can happen to anybody. Obviously, you always hope you're not that person. I don't know how anyone could know what their chances are for getting cancer. I've always assumed I have a higher risk for breast cancer because my grandmother had it. Other than family histories, how could we know our chances?

ITP, and all that has come with it, has definitely given me the scare of my life. But, in time, it's also helped put a lot in perspective. I'm still scared more than I probably should be, but I'm looking for the bigger lessons from it now.

Good way to look at it. Some people have used ITP to make lifestyle changes that they wouldn't have made otherwise. That can be healthier in the long run.