Recently been diagnosed with ITP

Hi rveryone,
I've recently been diagnosed with ITP having been rushed to hospital my count was at 3, I've been on the steroids for 3 weeks now my dose is 50mg. I go on holiday a week today and have been told my count is now 89 so I'm fine to go. Just wondering would it help to get flight socks etc as I'm going to Bali it's 6hour flight then a change over then another 9 hour flight. Has anyone flown being recently diagnosed or can give me any tips please. Thanks Mae

I would wear flight socks

Brilliant thanks I will buy some.

I have my first appointment with my hematologist tomorrow. What would be questions that I should ask? I am very nervous at it probably came at the best time due to a cancellation. I have broken out with a rash or Petechaie. I'm sure I will be sent for bloodwork. It is getting tiring with all the other issues I have however, any questions I can arm myself the better. Any help would be appreciated. Maronese

Hey Maronese!! With my first appointment I made a list of questions I wanted to ask like did they know a cause, how was quickly will they lower my steroid dose, how often will I need to be seen etc, they pretty much covered what I was going to ask, have you been diagnosed or not at this stage? It's all overwhelming I know and hard to get your head around, I'm still dealing with that being just 3 weeks in mine came all out of the blue too I didn't bar a clue!

Have a look at this. It is written for nurses with no knowledge of ITP but isn't too technical www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Hi MA, when you say came out of the blue, what do you exactly mean?

How did you first caught on to something was wrong etc thanks Maronese

It all happened on the Sunday I kept waking up with random bruises and had a heavy period, this alarmed me I went to the doctors and they did several blood tests and I was rushed to hospital on the Tuesday evening. I didn't feel poorly in my self maybe a tad tired then normal. Apart from that I had no idea my count was 3! What about yourself?

This will be short No Dr has come out and said you thrombcytopenia.
Original platelet count was caught at 149. GP says no big deal. We'll check it on next blood work.

Go see my rhume for my psioriatic arthritis and psoriasis (palmaplantar pustulliis- rare form) which they say is part and parcel of the arthritis. He puts me on Humira which is suppose to suppress my immune system and balance out my immune system.

I break out in red dots starts to spread worried about petechaie. I go to my GP. She says don't look like petechaie.

Go back to my rhume. Does bloodwork Platelets drop to 106. Talks with Dermatologist and both agree I should go off the Humira, but don't don't believe is the cause.

Go see Hematologist rhume sent me to does full workup. Platelet count jumps to 137. Results received today outside of hemoglobin up 1 tick from normal range and RDW up 1.5 ticks from normal range. All other blood work normal . Clotting time normal. Tried unsuccessfully getting a hold of Hemotologist.

I am frustrated. No Dr. Has come out and said I have ITP. Do I have ITP or Don't I.

3 blood tests Platelet counts 149, 106, 137. Help! Maronese

According to Medscape:

www.medscape.com/viewarticle/493408
The FDA has also received infrequent reports of hematologic adverse events, including medically significant cytopenia (eg, thrombocytopenia, leukopenia) associated with adalimumab use.

Low platelets caused by medication is called drug induced thrombocytopenia purpura, or DITP. It is not the same as ITP. Let's hope that you fall in that category, and that your platelets recover to a normal level now that you are off of the Humira.

Thanks Rob, still no answer. I am really frustrated. Thought I was seeing a hematologist, but she's an internist

Maronese:

ITP is defined as a platelet count consistently below 100k. Although your counts are below the normal range on most lab references, your counts do not meet ITP criteria yet. Your counts are great, they are high enough to be safe, and I wouldn't expect any symptoms with counts that high.
It is possible that your counts could drop, but as of right now, there is no reason to believe that will happen. Many people have abnormal labs on CBC's from time to time, and there is no reason to be concerned unless counts drop to a level that requires treatment. For most people, that is 20k or 30k.
I know you are worried, but all you can do at this point is monitor your counts and try not to think about it. There really is no cause for concern at this point. Believe me, when there is cause for concern, patients are told to start treatment or go to the ER. Platelet counts fluctuate constantly, and if you had daily counts, you'd get a different number every time. Since your counts are bouncing up and down instead of steadily going down, I'd take that as a good sign.

Oh no really hope your get some answers! I'm gutted I went for a weekly check up and my platelet count had dropped to 47 so I was unable to fly to Bali I went yesterday they have gone up to 60! I just feel at the breaking point and fed up stage!

Thank you Sandi, I will like to stay on this forum just to stay in touch with all. What a great bunch of people and forum. Maronese

You are more than welcome to stay and join us!

Hi Sandi, I was able to get a hold of my Dr's report and I was miffed to see that my diagnosis encounter by the Hemotologist states Thrombocytopenia. This is what they will be treating it as. The report states that it could be isolated Thrombocytopenia but, at this point they won't call it ITP. Interestingly, the report was from Feb 14 before my last complete workup showing platelets at 137 and the rest of my CBC normal. As I said I tried two days to get a hold of my Hematologist to go over this last Workup. I only found out yesterday about the Diagnosis because I had my GPS secretary email it to me.
Now I see why your Health system is better than ours. You Pay, but you get what you pay for. Here you get a Hematologist who I'm referred to by my rhume for the 1st time and sees a CBC report from my rhume with a platelet # of 14 9 and 106 and makes the diagnosis without waiting for the results of her CBC report showing platelets at 137. I'm scheduled for ultrasounds of my liver/ spleen and stomach. Sorry to keep whining and I have to hand it to you all in dealing with this disorder, you guys are all brave. I'm just disappointed up here on how you can reach conclusions on one visit. Maronese

Maronese:
I can guarantee you that a doctor here would most likely not give an ITP diagnosis based on your counts. At this point, it really is an isolated thrombocytopenia, and there isn't anything that should be done. Most of us have not had ultrasounds of the spleen and liver; we pretty much got the diagnosis based on platelet counts alone.

As I said, it is not uncommon for people to have atypical CBC results that self-correct in time. My white cells are often either too low or too elevated; they are rarely ever normal. My Hemo once had platelet counts in the 60's and 70's for weeks after an illness. He did not diagnose himself with ITP; he waited it out and his counts returned to normal. This sort of thing happens often and most people don't even know about it. You wouldn't either if you hadn't had CBC's done. It could just be a temporary thing due to your medication. Only time will tell but for now, your counts are quite good.

For the majority of us, we got a diagnosis when we discovered that counts were very low. Some presented with bruises all over their bodies and some had CBC's and were called and told to go straight to the ER. In my case, I just happened to have a CBC after seeing my GP and got a call that my counts were 50k. I got an appointment with a Hemo but by the time of the appointment a week later, my counts were 8k. I started treatment at that time.

I don't think you're whining at all, but I do think you're worrying a bit too much.

Thanks Sandi and all.
Can taking lots of opiates for pain have contributed to the fluctuations in platelets? Severe constipation addressed with all kinds of of different laxatives that didn't work? Does stress play a role? Why would they be checking for H.pylori (bacteria?). I always thought that H.pylori checked for ulcers?
If there are other things that any of you can think of please let me know, Thanks,

Maronese

Any medication can cause platelets to drop. I also take opiates though and have not had a problem with my counts. Stress can play a role as it wreaks havoc on the immune system. There are many reasons why counts can drop and you'll drive yourself crazy trying to figure it out. You probably will never know. Very few of us know the real trigger. I was diagnosed after a bad cold, but had also been going through months and months of work stress. I'm not sure which caused it; it doesn't really matter since the result was the same. I had to treat and couldn't fix it other than by doing that. Some people find that diet changes help, like going gluten-free.

H Pylori is known to be a cause of ITP, but treating it does not always resolve the problem. Many of us have had the test. Most have been negative.

Thanks Sandi and all.
Can taking lots of opiates for pain have contributed to the fluctuations in platelets? Severe constipation addressed with all kinds of of different laxatives that didn't work? Does stress play a role? Why would they be checking for H.pylori (bacteria?). I always thought that H.pylori checked for ulcers?
If there are other things that any of you can think of please let me know, Thanks,

Maronese