How do you not get anxious and stressed with ITP

Hope you have reached that magic number of 10 and are back home! I tried to go to the hospital when I was first diagnosed and they threw me out! haha

It was before I knew anything about ITP. A hysterical nurse called saying my counts were 6K and was at risk for brain hemorrhage. She said if I feel faint I should get to the Emergency Room right away. well I felt faint from the news! and went to ER in an ambulance. When I got there the ER doctor just looked at me blankly and said to the effect "What are you doing here??? Theres nothing wrong with you!" I had no bruises or any symptoms.

Like you Fiona, I cried not because I had ITP but because I had been such a fool and since I didn't have any insurance this bit of excitement was going to cost me a fortune! I sat alone in ER for 4 hours until finally they gave me 80mg of prednisone, the number for a hemotologist, and sent me home.

That was a hard lesson- it cost $2500. and took me 2 years to pay off. But good in that I truly believed the ER doctor when he said I was fine, just low counts, nothing to worry about.

ps. some people do have bleeding with low counts, it may be a crisis for them, but its important to look at symptoms. Find out what is ITP for you. I found I bruise when I'm around 10-20K but when I'm below 10- no symptoms. It took my hematologist a while to believe it but even he now says that something else is kicking in when my counts drop way low. I've grown to trust I'm okay, my body is handling it. good luck!

Posey - cute story! I can imagine feeling faint from that news and the hysterical nurse. Good thing you had an ER doc who didn't panic also.

I had a similar ER experience once. I went to the ER for a reason other than ITP, but mentioned to the doctor that my counts had been 3k four days ago. He looked at me and said, "There is no way you had counts that low and were not hospitalized". I told him that my Hemo just told me to go back to work. He did not believe me. They did a CBC and my count came back at 44. He walked in with a smile and said, "You're counts are 44k. I told you that you were not that low". Yeah, my counts went up nimnuts because I started taking Prednisone a few days ago. No point trying to make him believe me, he wasn't going to.

Side note: He ended up misdiagnosing me that day, which ended up causing life-long health issues. So much for ER docs.

Finally after 6 days I hit the magic number of 15. I was allowed to go home the doc said at 10.
I have to say i thought at one stage 128 was low for me and when i first started this topic how the hell was I going to cope. So life works in a mysterious ways. Iv dropped down to 2 then up to 5 back to 2 now 15. So it shows i can survive at 2. So please remind me Next time i panic and become anxious. I guess the signs will tell me. As you all say its not the number its the symptoms.
Do all your symptoms normally remain the same every time. So if I hit 2 again ill get the rash etc?

Hi Fiona, glad you are home, been following your story. I had a count of two with bleeding so I was in hospital at a low count also, I had a great dr who explained ITP in detail and also explained the reason for the hospital stay. I was in for a week and had lots of blood, platelets, plasma and other transfusions but my dr gave me a gate pass, so what that meant was that I needed all those transfusion but I was still able to go home for a couple of hours during the day, that alone told me that I needed treatment but I was also safe to be away from the hospital. That also made me realise that although this can be worrying, it is treatable and if they felt comfortable to let me leave I was ok. They did give me some rules to follow and basically it was to be careful..

Fiona the only sure thing about ITP is there is nothing sure about ITP.

You may or may not have symptoms. When I relapsed due to a tetanus booster after having years of counts 85-125k I didn't have one symptom - all I had was a "feeling".

Glad you are home and I hope your count stays good for you!!

No, you can't always tell when counts are down. I used to think I could, but ended up surprised a few times.

Yes, you survived a count of 2! Mostly, any count under 5 is the same thing, like your doctor told you. There isn't much difference between 0 and 4 because counts are not an exact science. At first we are all consumed with 'normal' numbers and think we have to be there. You don't. Anything above 30k is safe for daily living and it's okay to maintain anything above that. Glad you are home.

I started this topic back when I thought my platelet count was low, and it was 2 and I was hospitalised, since then I am off Steroids and my count went to 22,(dropped slowly due to tappering) they gave me IVIG and it lasted 4 weeks yesterdays count was 54, (4th week) I lost about 100 each week, I have another blood test next Tuesday with a possible next IVIG to get me through the Christmas period.
As I write this I think surely by now I should get used to this condition, I even went to see a top specialist/consultant ( who was so lovely and calming) which when I left there I felt better about the condition but as soon as I hear my results I go straight back into panic mode, and think if I lost 100 each week, I only have 54 this week, my Haematologist is waiting to hear if I can get Nplate so thats why I have not been given second treatment at this stage. ( I have appointment on the 13th Jan) She is also waiting for me to drop further as obviously she cant give me IVIG at 54, she gave it to me at 22 as the Consultant says I drop quickly and a lot so no point waiting.
I am angry with myself for still panicking for the endless amounts of tears, and the time worrying and looking for signs. They seem very calm, and I even asked if I should come in this Friday and Monday just to check the count incase.... they said no (interestingly enough when I had a count of 33 they brought me back every 3 days), now I have to get through 5 days.
I just dont know how to control my panic and fears anymore. I dont want to let this rule my life and right now unfortunately it is.
Surely the consultants would not let me go or would bring me back if they thought there was a big risk... surely....

I remember writing, here saying next time I start to panic someone stop me!! Why cant I live by what I preach....!

Fiona:

There are many reassuring voices surrounding you. It must help some. It will take some time to come to terms with this. You can start by not being so hard on yourself for not staying calm.

The thing that helped me the most was realizing that there are worse things out there. People lose control of their bodies and their minds, people die slowly with a lot of pain, people live with a lot of pain, and many of them maintain their dignity and can be an inspiration. I looked at those people and decided that I did not want to be a victim. In the scheme of things, ITP is a fairly manageable disorder. I also realized that illnesses worse than ITP could affect me one day and if I can't handle this, I'd never be able to handle anything else so I had to get a grip for the sake of my kids and my family. I saw my Mom go through six months of harsh chemo when she had lymphoma and she barely blinked an eye. If she could do that, I could certainly do this! So I did.

Maybe therapy would help?

Thanks Sandi, this Forum really does help a lot! I am grateful for all the support on here.

When I go for my blood tests every week I see patients having Chemo and I think I am SO lucky, this I know, I just loose it at times and go into a state of panic especially when I know my counts and I know I am going down and fast, a lot of people said I need to be kinder on myself and if I cry so what... I just feel desperate and want to stop feeling desperate and try and live. I know its hard now as I havnt started with proper treatment as its just been Steroids and IVIG and I also am SO grateful that Steroids and IVIG worked and worked so well with high counts, I just have to get the nerves in order and realise the mind is a very powerful thing!
I guess the reason why Haemo is calm is that I was down to 2 for about 5 days and then slowly went up to 9, and besides, small bruises, and blood spots in my mouth and a rash I had nothing else. They say they look at that rather than the count. I need to start having more faith in them aswell. When I saw the Specialist in London he did say he does not just treat when counts are low, he looks for signs.
Guess timing is also a bit rubbish as its nearly Christmas and I SO dont want to put my plans on hold due to low or lowering counts - its not like I am flying but still travelling by road to stay with family and friends.
I thought of going for therapy but not sure as can they really help if they dont know about ITP and what you feel or your anxiousness.

A good therapist can help you release your anxiety no matter what's causing it.
It's not good to live on edge like you are. The stress can damage your health a lot more than the ITP ever will.

{{{Hugs}}}

Fiona:

Life is too short to be stressed all the time. Sit back and try to relax.

Ha, I'll tell you another thing that helped me. Staying busy! I remember once when my counts were in single digits and it was almost Christmas. We were so busy at work that calling off wasn't an option, so I went. The time flew by so fast and I never had time to even think about my counts all day. After work a few times a week, I had to go Christmas shopping for my kids, so I was racing around the stores so I could get home after a long day. I didn't have time to think about my counts then either. I'd go to bed at night and think, oh well, I lived through today. I can do it again tomorrow. After a while, it just became funny to me.

Your Dr. is right, the symptoms do count more than the numbers. Has anyone ever explained the added protection that many people with ITP have that can help? People with ITP usually have larger platelets that work very well. They also tend to have platelet microparticles that can make a difference.

"Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected."

#3707 “Increased Microparticle-Linked Procoagulant Activity In Patients with Primary Immune Thrombocytopenia”

This article is old (1992), but still applies:

"Platelet microparticles (PMPs) are vesicles derived from platelet membranes that are too small (less than 0.5 micron) to be detected in routine platelet counting. They arise in association with platelet activation and other unknown causes. Elevated PMPs have been observed in idiopathic thrombocytopenic purpura (ITP), a disorder in which autoantibody interacts with platelets and the opsonized platelets are destroyed by macrophages. However, the clinical significance of PMP has been unknown. Using flow cytometry, we examined PMP concentrations in 62 patients with ITP and in 33 normal control subjects to assess the clinical significance of PMP in ITP. When compared with PMP levels in control subjects, PMP levels were significantly higher (p less than 0.005) in patients with ITP, but considerable variation among individual patients was observed. Patients with platelet counts less than or equal to 60,000 were evaluated for correlation of PMP levels with manifestations of thrombocytopenias; patients without symptoms (free of petechiae or mucosal bleeding) are found to have significantly higher PMP levels (p less than 0.05) than patients with symptoms, suggesting hemostatic protection by PMP. Additionally, we identified a group of patients with ITP who experienced neurologic complications resembling transient cerebral ischemic attacks (TIAs): recurrent episodes of dizzy spells or weakness in mild cases, and coma, seizure, or progressive dementia in advanced cases. Small cerebral infarcts were demonstrated by computed axial tomography scan or magnetic resonance imaging in spite of severe thrombocytopenias. Patients with this syndrome are often found to have higher PMP levels (p less than 0.005) when compared with the group free of neurologic complications. It is concluded that PMPs play an important role in hemostasis in patients with thrombocytopenia, and that high concentrations of hemostatically active PMP can be thrombogenic in certain clinical settings. Quantitation and characterization of PMP is important in assessment and management of patients with thrombocytopenia."

www.ncbi.nlm.nih.gov/pubmed/1583382

A Happy New Year to everyone - and hoping and praying that 2015 is a better year health wise than 2014, and trying hard to stay positive and mentally stable

I had IVIG just before Christmas on the 23rd Dec, as my counts were 37 the day they were checked and they were going to leave me over the Christmas period without anything, but because I drop so fast and quickly they felt I could have IVIG to get me through the Christmas (that and the fact I think I just broke down and kind of had enough at that point - maybe that was it).

So I had IVIG and counts went to 209 since then I am going down again, so today its at 80, just been to see the Consultant today and feel a bit - is despondent the right word... not sure, I thought they had applied for Nplate / Romiplostim before Christmas and were waiting to hear if I could get this on the NHS, however when I checked today it has not been done, so I have to wait and see, of course you never know now how long it will take, so the Consultant said in the meantime I have IVIG but they will not do IVIG at 37 again they will do 20 or even 10, so its back on the roller coaster ride I go....

I just want a 2nd line treatment to start and to keep me stable. Dont think thats to much to ask.

So feeling a bit down in the dumps today I know it will be hard these next few months so I guess I have to put my big girl pants on as they say and face the music!
I did say to myself 2015 has to be different I cant break down everytime I get a low count or panic and I know you all say life is to short to be stressed all the time!

I am trying I think it was Sandis method - that you go with that count and dont think about it changing until you get the next count.....!!
So think it will be 80 for the next 7 days....

You can do it, Fiona! Keep giving yourself those pep talks! :laugh:

A Pep talk or a slap!! HA Just tell me I will get a treatment that will stabilise things?? Eventually......

Fiona:

You are much too far away to slap! Kidding!

Okay, here's the thing. I can tell you that most people, I'd say 93%, do eventually find a treatment that stabilizes counts. I'd also say that on average, it can take about a year. There is a lot of fiddle-faddling with Prednisone at first and any more, I'm beginning to think that seems like a waste of time. It rarely works the first time or two to cause remission or stabilize counts. I used to believe in it as a first line treatment but after all these years, everyone hates it and few ever get anywhere. Maybe sometime in the near future, Prednisone will be moved back in the line-up. I don't know how much comfort this provides, but having ITP in 2015 is much, much better than having ITP even a few years ago. You have better options. Fiona - you have seen a doctor who, I would consider, to be the top ITP specialist in the world. You have access to him, which is a huge plus. He gave you great advice. Believe him.

I can also tell you that of those who do not achieve stable counts, the vast majority eventually accept life with lower than normal counts and move on. That happens because, let's face it, there is no other choice. I truly believe though that you will respond to Promacta or N-Plate and you will be okay. You do respond to other treatments, your counts just don't hold, so the real problem here is that you have to continue to treat for now. The problem is not that you don't respond. Prednisone has too many side effects though and IVIG is too temporary and takes too long, but you do respond. That alone means that you do not have to live with low counts. You can fix it, it's just a pain in the butt.

So now that we've simply narrowed ITP down to a pain the butt, you will realize that you can live with that. You can. The thing that helped me the most was taking a good look at the situations of others. There used to be some people here when I first started that juggled multiple hematologic problems. Some of them had APS and ITP. What that meant was that they had two clotting disorders at the same time. One caused bleeding and one caused blood clots. Some of those people had blood clots with platelet counts under 20, didn't respond to ITP treatments and had to use blood thinners. That is a heck of a lot to juggle and when I saw what they had to go through, that scared me and ITP seemed easy. Right around the time that my ITP went into remission (2005 - 2006), I found out that I had the APS antibodies. There is nothing you can do about it though unless and until you have a clot, so I spent the first few months having nightmares and being a basket case. I eventually calmed down as time went on. That was nine years ago and I have not had a problem with either APS or ITP since. The stressing and worrying was a waste of good time. I know that either or both could pop up in my future, but I choose not to worry about it and will cross that bridge if I ever have to. If I have to, I will deal with it like so many others do.

I have read articles in the past that have stated, "If you are going to have a hematological disorder, ITP is the best one to have". That in itself is reassuring and I believe it to be true. Take a look at APS or TTP and you'll see what I mean. Very scary.

Sorry I have been so long-winded. I am trying everything I can think of to keep you off of that ledge. You're doing better; you have found some humor and that tells me a lot. Just keep breathing, okay? Deep breaths, stay calm. You're doing great!