Feeling low and frustrated - does nutrition help?

[Sarah-Fitzgerald]

Hi I'm new here. I have been diagnosed with ITP since Sept 17. It's been a tough journey and I am still unstable. Last week platelet count was 314 due to a new combination of meds, but this week had dropped to 9. While they're trying to find a treatment to stabilise my platelet levels, I was wondering if anyone had experienced any headway through eating or not eating certain things?

[Fionn123]

Hi, The PDSA website has fact sheets on nutrition. I found that eating blueberries made my platelets drop. Hope you feel better soon.

[Sarah-Fitzgerald in reply to Fionn123]

Hey! Thank you! I'll look it up. I was packing blueberries in when I was severely anaemic because of their iron content and then found out that they were hopeless for platelets! It's a bit of a minefield isn't it?

[Sarah-Fitzgerald in reply to Sarah-Fitzgerald]

Hi, just looked up PDSA and I'm getting lots of info for sick animals!!

[Lynney11 in reply to Sarah-Fitzgerald]

The PDSA is a charity for animals in the UK! The PDSA you are looking for is the American platelet association. Where are you based? If it’s the UK then you could try looking for the ITP Association. Hope you find what you are looking for.

[rhezel]

Hi sarah! Same here, dr say im dependent to steroid which is not good. So i decided to be off steroid, im off for 6 days now, what i did is i drink papaya leaves juice, i blend it its very bitter but it sustain me till now without steroid.

[Sarah-Fitzgerald in reply to rhezel]

Well done Rhezel! I found coming off steroids slowly was so hard. The very high doses made me feel great, but the lower the dose got the more anxious, edgy and miserable I got! So well done in coming off altogether in just 6 days - took me almost 5 months! What medication have they prescribed for you now?

[rhezel]

My doctor wants me to try elthrombopag but i refuse ,, i didnt wanna do medicine with bad side effects anymore,,

[Sarah-Fitzgerald in reply to rhezel]

I'm on elthrombopag - and there have been absolutely no side effects! In fact, 50mg a day took my platelets from 14 to 204 in less than a week and I felt fantastic! The jump was so big though that consultant got concerned, and after another few days of taking 25mg a day they'd jumped to 314, he stopped them. 5 days later I was down to 9! It's so horrible. I'm back on 25mg a day now, this is 3rd day, and having test today - anyway, I would encourage you that this drug has the least amount of side effects, ie I've experienced none, out of the different things I've tried.

[rhezel]

Ohhh thats good,,, thank you sarah! take care always ,, GOD bless you!

[Sarah-Fitzgerald in reply to rhezel]

God bless you too! I'm keen to help my body as naturally as I can, good nutrition etc, but I think medication is all part of the healing process too! Have you enjoyed remission at all? As yet I'm still hoping to get there - my platelets yo yo! I'm slow and shattered all the time but keeping faith for healing and getting back to my normal life .... please God!

[rhezel]

Yeah im enjoying without steroid i feel ligther,, but our body have different response to different medication, yours must be positive ,, ill pray for you sarah ., youll be fine without being dependent to medicines,, please take care always

[Sarah-Fitzgerald in reply to rhezel]

Thanks Rhezel. I'm praying too and I am believing for a drug free life, just happy to use the meds until I'm stable and energy levels have gone back to normal. Maybe I just need a prolonged rest at the moment and this condition is being used to make sure I get it! You take care too x

[msuoconnch]

I have been using papaya leaf extract in a pill form after my Rituxan. My counts doubled to 170 after using papaya leaf extract, but Dr said it could be lasting result from Rituxan (which my last dose was early January). I was at 0 in early December 17. I had ITP 15 years ago, went into remission after taking Danazol (did the prednisone/IVIG path back then with no results). The idiopathic nature of this disease is the most frustrating part. I am always wondering in between tests as to what my number is, looking for blood blisters in my mouth, being extra careful not to cut or bruise myself, etc. Basically, I am letting the disease control me to some extent.

Someone made a great point in one of these blog posts.....You have to find a way to live as normal as possible. The reality is that there is little you can do to control this disease. Sure, you can contribute positively by eating right, exercise, etc.....But changing your mindset to be positive is the best thing and the hardest thing.

Wishing you luck and good health........

[Sarah-Fitzgerald in reply to msuoconnch]

Hi - thanks for this. There seems to be a balance to be had! I tried to "push through" using positive thinking and behave as though there is nothing wrong for the first 6 months of having this condition. I refused to worry about the blood blisters or the bruising and kept telling myself it would all pass and I'd be fine. And to some extent I still believe that - even if this means a different pace of life and living with medication.

However for me at this moment, this positive, "push on through" attitude has resulted in me being almost bed ridden as the physical and emotional fatigue I am experiencing is beyond anything I could have imagined! When my blood count is high, usually within a week of any new drug combo, I feel amazing and back to normal, but it is so short lived as my count drops I literally fade along with it!

I am trying to stay positive and focus on each day - some are good, some not so good, but I found looking ahead as though I would be fine, "by then" , has led to disappointment and a fight against feeling hopeless. So, a new perspective on a "positive attitude" is needed I think - maybe one day at a time, no plans, no expectations for the moment .... hopefully, giving my body some rest will help.

Wishing us both good health msuoconnch!

[SoporRose in reply to Sarah-Fitzgerald]

Sarah,

The push-crash cycle is pernicious. I haven't found a way to deal with it properly, in part because some days I can do more than other days, but I never know when I have gone too far until the next day. It makes it very difficult to judge limits. And I don't want to squander any opportunity to accomplish any goals not do I want to miss out on opportunities to participate in activities that mitigate the sense of isolation chronic exhaustion brings. I'm trying to track my activity levels and reactions as well as medications and sleep, but even that is exhausting, and I'm never convinced that spending the time and energy on such a pursuit is more important than having clean clothes, making dinner, or even getting some work done.

The "push on through" approach is disappointing. It's so often the story we get told: we must pull ourselves up by our own bootstraps, soldier on, be tough, don't be a burden, have a good attitude and a stiff upper lip.

Here's a resource for Chronic Fatigue from CFIDS:

cfidsselfhelp.org/library/t...

The information is validating, even if it doesn't offer the answers I want.

Ruth

[Lynney11]

I haven’t found that what a I eat has any lasting effect on my platelet count. However since I started taking Eltrombopag just over a year ago my count has stabilised at over 100. My last count was 189 which, as I am taking medication, is considered to be too high, so I was told to take one 25mg tablet on alternate days. I will be going for a follow up blood test in 2 weeks time so watch this space up see how I get on. Oh and I have hardly any side effects from the drug, unless having finger nails flaking is a side effect. Maybe I should be taking a multi vitamin? Good luck.

[Sarah-Fitzgerald in reply to Lynney11]

Hi Lynney11

Thanks for your reply! I've checked out the pdsa website and others on food stuffs and there doesn't appear to be anything conclusive - but several people have mentioned papaya extract! Anyway, I'm also on Eltrombopag and like you no side effects. My count went to 314 from 19 in 8 days initially, so they cut the dose and then stopped it altogether after 4 days cos count kept rising. My consultant says anything between 150 and 400 is "normal". However, within 5 days of stopping, my count had dropped to 9, and I had disolved into floods of emotion and fatigue.

I find the fatigue the most complicated and difficult part of this condition to cope with, as it is so disabling. It's a tiredness that doesn't go away with sleep and is so depressing.

I hope you find a good vitamin to sort your nails out! I have mine done at a local salon with something called gel strength - its flipping amazing!! Good luck!

[Lynney11]

Hi, I’ve just had a gel manicure as a birthday pressie from my daughter so I don’t have to look at my nails for a couple of weeks! Sorry to hear about the fatigue. This is a symptom I don’t have - at the moment - but I understand that many ITPers do suffer badly. Does the fatigue lessen when your count rises? It must be so debilitating if it interferes with your daily life. I hope you find something that could help with this most distressing part of having ITP. Good luck!