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ITP Support Association
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Too many decisions

Hi everyone,

I'm looking for some advice?

I've had ITP for 3 years now, first started on preds, ivg, rixtimab, and nplate.

N plate does work for me but currently trying for a baby and haematologist isn't being very helpful... Was started back on steroids 25mg once daily but count is currently 17.

He has asked me to think about what drug to try whilst TTC. I've been given the option of cyclosporin or azathioprine. Both don't sound great?

Anyone in the same boat?

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My count was 19 (UK). Tried 2 hits of steroids, Ritoximab (sp?), chemo which destroyed my neutrophils so they stopped it and IVIG. Didn't have N plate. Ethrombopag put it up to 82. On it for 3 months now so we'll see.

Complicated by having a touch of CLL as well and a very serious brain injury which the docs say they were 'concerned" at. They thought I was in great risk of a spontaneous brain bleed. Game over.

Always feel decent but sometimes a bit tired.

Believe me when I say ITP is nothing compared to a brain injury. Of course I'm not making light of peoples conditions or justifiable worries but I always put it in perspective. I'm alive, mobile (well, just a smidgen paralysed), active, can speak & eat. Plenty of people are worse off.

What I'm saying is chin up.

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I applaud your positivity! There is always someone worse off. However, I'm so fed up with this ITP. It may not be a brain injury but my life is unrecognisable. I'm self-employed and I used to work 2-3 13 hour physical days; teach for 4 hours a week and write for around 15. I also have a home to run and relationships to invest in with my husband and three adult children. Since ITP, I am exhausted after around 4 hours activity. I can no longer work for more than 4 hours at a time, I can't socialise in the evening if I've done anything during the day or expect to do anything the following day; if I clean my house it's the only thing I can do that day and the work situation is beginning to add financial pressure.

I am grateful that I'm not in pain, I don't look ill and ITP isn't terminal. But, its taken 12 months to get my platelets from 6 to 50. I've been prevented from flying and had to cancel a holiday; I hate the tablets and I feel old before my time with the incapacity due to fatigue that simply doesn't seem to go away with sleep.

I am generally a very positive person, and I've coped with ITP by trying to focus on what I can do rather than what I can't, and you're right, there are people who are worse off and I'm pleased to hear you say you're not trying to make light of peoples conditions, because if you were, I'd encourage you to think again.

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Yes, but 50 is good. The tiredness is really bad and being s/e is hard at the best of times - I know as I ran my own business for 30 years.

Why are you prevented from flying?

I certainly don't dismiss ITP patients experiences and the never ending round of doctors, pills, worry & fatigue.

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Sarah,

You have articulated so much of what I feel. I'm so fed up with trying to convince myself to be satisfied with the little I manage to accomplish with the minimal energy I have. It doesn't add up to a meaningful life, and I am continually disappointing other people as well as myself. I don't seem to be very good at acceptance.

Ruth

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Wow, Sarah, you are living my life for the past 14 years. The only thing I sort of disagree with you is your statement that ITP isn't terminal. While it may not be the direct cause of death, it most certainly is a HUGE contributing factor, such as in a spontaneous bleed in the brain. With that thought constantly in my head, I don't sleep much!!

Nothing has been successful in my treatments, from steroids to chemo to nPlate. Presently, my platelets fluctuate between 20,000 and 48,000. One day at a time, that's all we can do.

Good luck to you!

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Climo:

You have my sympathy for trying to cope with a serious brain injury on top of ITP. It must be frightening to have to worry about how one affects the other.

Knowing that others endure lives much more awful than mine is likely ever to be never makes me feel better. The pain of others just makes me feel worse for having so little energy to deploy to make the world a better place.

I hope you continue to heal.

Ruth

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Thanks Ruth.

I wasn't moaning about my lot in life, though like many here I sometimes wonder "why me?" but consider myself lucky things ain't worse.

I try not to think and use negative words like victim, sufferer, etc and set myself achievable goals. I never give up though I do accept my limitations and work within them.

I, like all Brits, are intensely grateful for the NHS system and read with dismay posts here & on the CLL forum of the plight of Americans having to have limited treatment 'cos their insurer won't pay for more drugs.

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Climo,

I cannot fathom why people here in the U.S. are so afraid of NHS of our own. I hear people say, "But then we'll have to wait to see a doctor" — but we already have to wait, sometimes months, to get to a specialist. The insurance (just the insurance, not the co-payments or deductibles or medications) my husband and I pay for me alone costs more than the mortgage on our house. It's insane.

I applaud and admire your positive outlook. I'm sure the CLL must make everything so much more complicated. I keep reminding myself that scientists keep learning more and more and that there's always a chance of a new treatment or even a cure.

Ruth

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“The greatness of a nation can be judged by how it treats its weakest member,”

Gandhi, actually he said it about animals.

America is a land of extremes, extreme landscape, weather, wealth, kindness, aggression, education. The American attitude to so many things is unfathomable. I'm married to an American and she doesn't understand why either. 50% of Americans are lovely people, the other 50% are people you would go out of your way to avoid.

The NHS isn't perfect and at this time is under idealogical attack from the tories would want to privatise it so their friends can make money. It's being systematically starved of funds. The gov has just increased it's budget by 3.4% whereas the Blair / Brown gov spent 5%. I always ask my docs about the state of the NHS - they all agree.

Having CLL is troublesome, fortunately, like ITP, I've only got it lightly. CLL & ITP are often found together but why is unknown. The docs say the idea is to keep me alive until a cure is found. And there will be a cure.

Many people here are obsessed with their counts and worry about what this means. It's patronising to say this I know but if you feel ok today, you are ok today. The numbers are irrelevant.

I spent 2.5 years in rehab learning to walk and move correctly, it's a work in progress of course and lately I've developed a bad walk again so must try harder. My balance is bad, I fall often.

Upsides are that I learnt to walk faster than the hospital had ever seen, discharged myself from hospital, learnt to ride a bicycle (rehab people hadn't seen that before) and last year rode 600 miles across France falling every day and ending up breaking fingers and black with a bruise from hip to knee. After returning and being told off by my docs who 'threatened' me with chemo if I kept falling off I bought a recumbent trike and will be doing 700 miles in September again in France. That's the plan anyway. :)

Of course things have not always been rosy, severe depression, epilepsy, lack of cognition, memory, PTSD, etc.

I've seen some dreadful things, people who really should have died and have no hope of getting better. There's always someone worse off than yourself. The important thing is to never, ever give up.

So set goals each day, little things. Even walking upstairs is an achievement for many.

You're all bored rigid by now I know so I'll shut up. :)

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Good heavens, no! Not bored at all. Your determination and success are both amazing.

I have no comprehension for what's going on in my country. I just keep apologizing to the next generations. And I keep voting.

You wrote

Many people here are obsessed with their counts and worry about what this means. It's patronising to say this I know but if you feel ok today, you are ok today. The numbers are irrelevant.

I have sort of the flip-side of the problem. My counts are good and have been for five years, but I'm still feeling just as Sarah-Fitzgerald does. So you're quite right: numbers are irrelevant. My haematologist says my counts WILL drop again at some point, probably soon. Like you, I struggle with depression, memory, and rusty mental gears (though not the epilepsy and PTSD).

I am blown away by your bicycle trips, past and upcoming. A recumbent bike seems a brilliant compromise. Two years and counting is a long time. Your middle name must be Perseverance.

Ruth

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I'm a bit of a wimp and I'm certainly not brave. However as the helicopter lifted me off the rockface in the Alps where I was hit by stonefall, awake but critically injured my friends said to each other, "He'll be ok as he's such a determined bastard" which is the finest compliment I'd ever been paid :)

My senior neuro said as she discharged me, "We rarely see brain damage as bad as this in a living person. They're either dead or a vegetable and almost never walking & talking." I was very, very lucky.

We'll see what CLL & ITP bring.

Life is never boring.

You'll be fine Ruth. Just be kind to yourself.

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Climo,

I agree: that's a superb compliment. Some people have amazing brains that keep on firing despite great damage, and I expect that your recovery is due, in part, to luck, but also to your stubbornness. It's perfectly possible to be both a wimp and brave, too. It sounds like you had quite a harrowing adventure. No wonder you have PTSD.

And thank you for your gentle words. As I read them, I realized no one has told me anything like that in a long time.

Ruth

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Jennifer,

Wow: that is a lot on your plate. I don't know anything about either of those medications. What does your obstetrician recommend? I wish you luck with all of it. Let us know how what you decide.

Ruth

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Jennifer,

What did you decide? How are you doing?

Ruth

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Just curious...is it possible that you could have an underlying infrction, fungus, paracyte? That is what happened to me ( I caught it in Costa Rica) and the Westen drs never found it for 7 months 5/17-10/18 I was on IVIG, Promacta, Nplate, Dex bursts, etc and then a homeopathic dr finally fixed me with para rid and immune balancing stuiff. and now for 10 months I am fine with no platelet crashes which I experienced every 2 weeks to as low as low as 1,000. The Western drs wanted me to do Rituxin, thankfully I did not.

Good Luck and be well!

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