had first hemo appt.?????

Hey everyone I had my first hemo apt on Monday and I'm feeling uneasy about it, I go back Thursday for a follow up. So here is what is up I went to my gp on September 20th because I was tired all the time having trouble sleeping and been getting headaches. I also noticed I had been having a lot of bruising on my legs and arms for no reason. They wanted to draw blood, on Monday they called to tell me everything was fine but my platelet count was 45 so they wanted me to see the hemo.

I go to hemo on Monday and he starts explaining it all to me that he things it's itp and he wants to start me on predisone 60mg a day and come back in a week he also did another cbc and some other labs which I will get results for Thursday. But they told me my platelet count that day was 74 so I'm just curious y he went ahead and started treatment when they were coming up on their own? I also have to go Wednesday for another cbc so when I go Thursday he will know my levels. I am just really confused and would like to know what you guys think this was thrown at me so fast I was so overwhelmed and I'm sure I missed half of what he told me. Thanks!

Chels:

I can't tell you what to do, but I will tell you this. I would not start Prednisone with a count of 74. It seems like an overly aggressive approach considering that your counts went up on their on and could continue to do so. Some Hemo's are aggressive , and it's usually because they are not very familiar with ITP. Monitoring would be an appropriate measure right now.

Prednisone can be wicked and once you start, you have to keep going and taper slowly over a few weeks or months. 60 mg's is a pretty high dose and the side effects can be nasty (weight gain, moon face, water retention, muscle and joint pain, extreme fatigue, mood swings, excessive hunger, brain fog, high blood pressure, rise in blood sugar levels, etc).

Were you sick in the weeks or months before you found out about the platelet count? If so, illnesses can cause a temporary drop in counts and they often rebound.

This is your decision. If you are not having bleeding symptoms, you do not have to treat. Good luck with whatever you decide to do.

The first visits, especially if you have lots of bruising, are a bit nerve-wracking. For better or worse, my hematologists and other docs have been passive (not aggressive), and mostly just send me off for CBCs, plus other tests including a prothrombin time test, vitamin level testing, and last June, an ultrasound.

So I'm all for being thorough but I have to second what Sandi said. I'd suggest bringing a family member or friend with you to your office visits. Having someone with you makes it easier to take in what you're being told, ask questions, and not forget about things that you want to know about.

At all of my visits, I bring a checklist related to the purpose of the visit and a list of questions. I find that keeps me focused and organized.

Hi Chels,

I think it is widely agreed that with 74 you are save. In my part of the world the "standard list" is as follows:

150 to 450 normal
50 to 150 monitor
30 to 50 monitor closely (~weekly)
30 and below start treatment

Since medicine is not science there is no single answer to a question. Some doctors use different treatments and start treatment at different levels based on their experience (or lack thereof). Mine for example starts my treatments usually not before I reach 20. With long time patients the doctor and patient usually have experience how easily a patients bleeds. Some patients show bleeding with 50 others have almost no symptoms above 15.

The best you can do is discuss it in detail with your doc and let him explain why he think you need treatment, how long he wants you to use it, etc.

Good luck
Joerg

thank you everyone so much. i had not been sick at all i never get sick. i also had lots of bruising that i was noticing an my gums had been bleeding. i asked him if 60 was alot an he said not really it goes by ur weight. i guess we will wait an see what my count is this week i go wed. for labs. he had ran other labs other than a cbc i cant remember what all an my paper is at home. of course i talked to my family an they all say do what the doctor says. im just really confused. thanks so much for ur help please any other advice would b great.

Current guidelines for doctors suggest treatment for counts under 30k. You could ask your doctor his reasoning for wanting to treat you with the counts you have, which are good. Can you get a second opinion before you use the prednisone?

I would ask your doctor if he has ever had to take 60mg of prednisone for any length of time. My personal opinion is 60mg of prednisone is high - I was on that dose and it was hell! I also told my hematologist I would not take it after I came out of "remission" in 2002 when she took her prescription pad and started writing - and I didn't!

I think the hardest thing for us to grasp is that it is our body and we do have a say in what is done. Read and know what is out there - knowledge is power.

Good luck!

this is my 4th day of pred an i dont like how i am feeling my heart rate is really high an i feel like i cant breath an im very irritable today i do not like this is this normal side effects

Yeah, that's pretty normal. It can get worse so if it does, don't panic. The longer you are on it, the harder it gets. That's why we said it's not good to use it unless you really need it.

I'm sorry you've been sucked into treatment with such a potent med. As the others say, it wasn't necessary in the first place, but now you have to suffer the consequences of having to endure it until you can safely stop.

I will tell you that the steroid dose does not always strictly go by weight; it's up to the MD's discretion according to age, weight, disease type and severity, and other health conditions. I started taking it when my count was just 6. I firmly let my MD know that I did not want to start it at all, so he agreed to a very conservative dose of just 20 mgs. It shortly raised my count to a safe place that was mutually satisfactory for us both. I've never taken more than 30 mgs and only then when my count was in single digits.

I suggest that your doctor is not very knowledgeable about ITP and that you make an effort to find one who is. It's in your best interest to research and question "what the doctor says" instead of blindly following his orders. As Melinda says, knowledge is power.

thank u guys so much for all ur advice i am struggling today an i dont like feeling like this. i am 32 an i have no other issues with my health.

Everyone who has been on Prednisone hates it. 60 mg's is a pretty standard dose for ITP, but most of us agree that it is a high dose. Of course a few people have been on a higher dose, but the side effects can be just as bad. Starting Prednisone is like opening a can of worms. It can start a whole slew of short and long term side effects. Most people have no idea how bad drug side effects can be until they are on Prednisone. It can actually cause psychosis and/or clinical depression, among many other things.

This would be a really good time to get another opinion.

Yes I have labs wed. and appt. with him on Thursday I am gonna see how that goes and was just saying I think I need a second opinion. But do you have to be referred or can I set something up myself?

If your health insurance requires it you can ask your pcp for another referral. You can do some research on doctors in your area.
On this website look under resources and there is a section called Find an ITP doctor.

Thank you dru! I was also wondering if he was still trying to rule everything else out because there were still a few blood test on my sheet that were sent out

General chem- send out

Special chem
ferritin
folate
b12
all those said results still pending

ptt, activated
prothromin time
fibrinogen activity
platelet autoantibody panel

those all still said pending

what are all these for does anyone know

Special chem - very standard test. Checks liver, kidneys, blood sugar, potassium, sodium, etc.

ferritin - this checks the levels of iron stored in your body.

folate - type of B Vitamin

b12 - Checks your level of Vitamin B-12

ptt, activated - measures how well blood coagulates

prothromin time - measures how long it takes your blood to clot

fibrinogen activity - measures the amount of fibrinogen in your blood, this is another clotting factor (besides platelets)

platelet autoantibody panel - this will show whether or not you have antibodies that target platelets.

They are all fairly standard tests. A lot of people with ITP tend to have low Vitamin levels, so don't be surprised if any come back lower than normal. These tests won't really rule anything else out, but can tell you if you are clotting well and if those particular levels are in normal range.

ok thanks sandi I figured they were all normal test. I guess I thought maybe he was ruling stuff out. but I guess since all my other labs are with range there wouldn't be a reason to think anything else is wrong? I didn't get a copy of the labs from my gp so I am not sure if anything else has changed but I am curious and will have to ask Thursday. I am writing down questions that I wanna ask I wanna know why he is already treating me when my counts went up over 2 weeks with no meds. I am not like these side effects and I wanna stop the pred. will he taper me at my own request?

I have no idea what he will be willing to do. If your counts went up, maybe he will start a taper. I'd hope so since there was no real reason for it in the first place!

I always get copies of my labs. It helps to have something to refer to if anything comes up months or years from now.

I will always get a copy from here on out. I guess this is a learning process since I have never been sick, lol I am kind of caught off guard, lol questions and what to do. Thanks so much for all you help this site has been wonderful.

I'd like to add a suggestion: Keep a chart of your platelet results and anything else your hematologist or other docs involved in your treatment decide to monitor. I keep my chart in a spreadsheet, so I can quickly check anything they say about my counts. This turned out to be particularly useful when I had to change doctors about a year ago. The old docs didn't forward all my results, so I had to fill in gaps for the new hematologist and primary care doc.