Freaking out big time about ITP

Hi everyone! sorry I really need to talk to some people on here. I have been diagnosed with ITP for many years but it is episodic. I was in London this week and on holiday and just after a cold. Then suddenly my platelets dropped very low. I was in hospital for two days and had ivig. They went up but now I have to come home after my holiday a week later. I am taking the ferry as im too nervous to fly. I was also put on Steroids and I am a complete mess. Honestly, today being in London and walking around by myself has been terrible as im highly anxious that I will get a red dot again. I fear I will get one on the ferry and I will have a panic attack. I cannot stop the dread of everything and I really need to know how everyone gets over their fear. I even had a stand up row with my boyfriend over nothing. and im so tearful. I had to take off work and im also anxious that I should be in work right now. I have not slept. I know im ranting but I honestly feel sometimes I cannot breathe with the anxiety im feeling. I feel like its so unfair that all the work I have done to get my current job might be ruined. I also feel like im gonna be trapped in London and not be able to get home cos im too scared to go anywhere. is this steroids? the tramatic stress? or the itp? I feel like crying all the time! Please help!!!

One word for you Ashy: STEROIDS! What is your dose?

I totally understand! I am back on prednisone and feeling like Mr Hyde. arggh I'm impatient, insensitive, talk too much and in-your face. Can't sleep either. Plus think I may be getting an ulcer- have pain from stomach acid. I'm taking Pepcid an acid blocker.

Hang in there, its not YOU. hope you can get off the steroids soon! good luck

Aisling calm down. You're fine and nothing is going to happen to you. Last time you had low counts nothing happened and it isn't this time either. Just get back home by ferry and get onto some different treatment. Didn't you do mycophenolate last time? Try that again.

Just breathe, okay? Everything is going to be fine. One red dot does not mean death is imminent, you know that. Petechiae comes and goes and even being covered with them does not mean anything bad will happen. Do you have mouth blisters or gushing bloody noses? What were your counts when you left the hospital? It's possible that you have an entirely normal count and will continue to since you are treating. If that is the case, you're stressing for nothing.

Prednisone can cause the anxiousness, and dealing with that can be hard. You're letting it take over your thoughts and you need to get control back. In all honesty, you could probably fly and work with no ITP risks at all. You just need to talk yourself down from the ledge that you climbed up on. You can do it.

Hi everyone thanks. I freaked out but I realise now it was the steroids. I have been having crazy like tendencies the last few days. And yes, I got back. Yes, Ann. You are right, I was fine, and yes I'm also on that tablet. Sorry, I gurss I find this all frustrating. Posey mint, I'm on 40mg, last night I could not sleep right again with mad vivid dreams and just generally restlessness. Although I'm thankful for what I got which was four hours of broken sleep. I find sometimes through out the day my mood will change rapidly and il feel very down.
Thanks Sandi. My counts were 21 after three Ivigs but they gave me more after that and it has not been checked since. I have no symtoms now only the bruises I got last week. I'm constantly checking so I'm trying to stop. My job is part time and it's in a school and I'm a special needs assistant to a six year old. She is a good child and does not need physical help but some of my duties are out doors on yard duty and I've got a ball to the head on one occasion and all that. I just worry if my blood is low they will have a problem. Technically this role only lasts three more months so perhaps I will be ok. I just worry that every time I go for a new job I will have a premedical and I could get denied on that grounds?

If you would get denied a job due to ITP, you could probably ask your doctor to write a letter stating that you are fit to work. You're worrying about something that didn't even happen yet though. For now, could you stop the ball playing for a few days and see if the kids can do something else outside, or keep a safe distance from them? A ball to the head may not cause harm unless it's a pretty heavy ball. How hard do 6 year old children throw?

For now, just take one day at a time. Having no new symptoms is a good thing and it's possible that counts are up. Have you responded to Prednisone in the past?

Agree with Sandi but also don't forget that there is now legislation about disabilities at work and employers are scared of falling foul of such legislation. You shouldn't tell a prospective employer about ITP until after you've been offered the job, and even then often it isn't necessary to tell unless you are asked or unless you want time off for appointments or somesuch.

I did the same job as you, special needs assistant at a primary school, when my children were young. It fitted in with school hours and was a great job, very rewarding.

Aw that's cool to know Ann. I also work in primary. My job is not physical at all and it is mainly working on intellectual disability and a few fine and gross motor skill problems. Helping with jacket etc. ya I think you are right to not say it until I get offered. Over here when working on the education sector you have to complete a premedical form and highlight if you have been in hospital in the last five years. I had done this but the doctor declared me fit at start of September.

Sandi, there are older kids in the school who use harde footballs I walk around with teachers supervising so that's the issue. It's only fifteen minutes of the day. But still I have been hit several times.

I went back to my doctor today and he was so shocked my platelets went to 2. He actually thought I had said 200. He had checked them the week before I left and they were at 300 so he was very worried saying that anything under 20 would need to be monitored. It's funny here they send u into hospital under 20 and they also keep you in hospital for weeks. In London, its completely different.

Also, I tried to explain to my doc I wanted to come off the steroids as I was also on mycophenlate. He ended up keeping my on the same dose of steroids. I'm going to taper slowly off them and he has made me an apt next week with hemotologist. Is it safe to taper 5mg at a time.

He also said not to go back to work til he knows the count.

Hi,

Just to chip in, on high dose steroids I thought I was loosing my mind, terrible side effects on prednisone but it got my counts up. Could not sleep, I have a stressful enough job and my Doctor told me I needed my sleep and he insisted that I went on sleeping tablets, which I know you don't want to get hooked on them, but they helped me while on the steroids. Good news is when the steroids stopped I returned to normal. Hang on in there.

ashybobashy wrote: Hi everyone! sorry I really need to talk to some people on here. I have been diagnosed with ITP for many years but it is episodic. I was in London this week and on holiday and just after a cold. Then suddenly my platelets dropped very low. I was in hospital for two days and had ivig. They went up but now I have to come home after my holiday a week later. I am taking the ferry as im too nervous to fly. I was also put on Steroids and I am a complete mess. Honestly, today being in London and walking around by myself has been terrible as im highly anxious that I will get a red dot again. I fear I will get one on the ferry and I will have a panic attack. I cannot stop the dread of everything and I really need to know how everyone gets over their fear. I even had a stand up row with my boyfriend over nothing. and im so tearful. I had to take off work and im also anxious that I should be in work right now. I have not slept. I know im ranting but I honestly feel sometimes I cannot breathe with the anxiety im feeling. I feel like its so unfair that all the work I have done to get my current job might be ruined. I also feel like im gonna be trapped in London and not be able to get home cos im too scared to go anywhere. is this steroids? the tramatic stress? or the itp? I feel like crying all the time! Please help!!!

If you strongly correlate this platelet episode with a cold/viral infection, then you will likely bounce back but it might take some time for the body to regulate, without any steroid treatment.

Dein style, yes I tend to get low platelets after a virus though not every virus I get. I was on antibiotics a month before and I hadn't had one for years so I don't know If it was the three viral infections I picked up a month before. Yes John I'm down to 20 mg but I'm stil not sleeping great.

I'm freaking out rhough cos My platelets were 92 after I came home from London. Week later 72 and today 50. No symptoms but just aggravated. On mycophenolate mofetil but it took a while to work the last time time.

Freaking out really isn't good (for body or soul) - last time I did that due to platelet count I was "blessed" with a case of painful shingles. So you see - freaking out did more harm than good. I'd try to not freak if I were you!

Thanks u are right. I actually had suspected shingles a year ago. No drop at all. I guess I work and I work in a school and if they go down I might miss work

Ash:

If missing work is your fear, you should try to work something out with the school. Maybe you can be excused from recess when the balls are flying. There are ways to work around it. You are worrying before anything has happened. Take things one day at a time.

Hi yesi could dp that.platelets 24 today so dissappointed. I aked my doc could they treat me as an outpatient as appose to putting me in hospital. Its ridiculous. Like im trying not to get anxious and not let it bother me. I worked fine today but im sp anxious. I cannot stop it.

Twenty four is a great count. What are you worrying about? You can do anything bar boxing with a count like that.

Ya I guess its not too bad. it dropped by 20 each week since london. I just need to calm down. The doctor wants me in for a blood count. He gets funny with a blood count lower then 20.i dont have many bruises or petachia. I would genuinely not know only im aware of the it now. I have a few here and there. And now they are all sick in school.

To be honest I wouldn't like my count to be 24k either no matter how many people tell me it's a good count.

Regarding the sick kids - I know they are right in your face but no matter where you go there are going to be sick people. The grocery store, movies, church, department store, everywhere - only way to avoid them is to stay locked in your house, alone, and that isn't going to happen. Just be smart and keep washing your hands - don't touch your eyes or put your fingers in your mouth.

You're right nothing I can do to avoid colds bar staying in altogether. Platelets went up to 30s so another test tomorrow will see how that goes.

How are you doing Ash? Great your count was in the 30s, what was your most recent count result?

Hi Melinda. They were 38 and now 41. I have the sniffles for the last week a bit of allergies but im happy enough at the moment. Sinuses are annoying me a bit but cannot complain. Still on the cellcept. And tapering off those terrible prednisone. But the last time took two to three months to settle. So we will see how it goes. How you doing? Work certainly keeps me busy! Lol

Hi Ashy- Sounds like your platelet counts are going in the right direction- good for you! keep it up.

ques: Are you are having any side effects with Cell Cept? I've never taken it but wondering what its like. Does it take a few months to be effective and raise your counts? What dose are you comfortable with?

Thanks and good health to you!

Glad to hear your count is ok - hope that keeps up! There is so much "junk" going around here - from URI to intestinal bugs to colds. When we lived in Tokyo a lot of people would wear masks when they went outside - think they had the right idea

What dose of prednisone are you on now? It will be nice to be off it and only on 1 med.

I have a question - is cellcept something that is taken for just a certain length of time or for an indefinite period?

I'm doing fine - thank you for asking.

Keep us posted!

No side affects that are obvious. Had a sore throat at different times but nothing very bad.

The only thing ive known about cellcept is that it takes 2-3 months to work. In between I had low platelets for a while and was frustrated but they did rise.

Once my platelets rose the doctor took me off them pretty much right away.so no not something u need to take long term. But it depends I guess if ur platelets stay up. my platelets stayed up after it. I took 250mg twice a day and that was it.
In general, I would say they are a good option in terms of side effect and def worth a try since side effects are minimal. Dr drew provan put me on this and I read a paper he did on it somewhere where 60% plus respond. Dont know where I found it. I think its great in terms of treatment if it works for you. Long term obviously dont think its good but that comes with a lot of drugs.

Im on 5mg pred from tomorrow so happy to be nearly off them