Hi, I live in the uk, and have chronic but mild itp, I've really been suffering with fatigue recently, is there anything that can help?

[Nikkinackynoo]

Gp led care.

[NickyD]

Hi there, we all suffer from fatigue with ITP. I can only say that since my platelet count has stabilised the fatigue has gone, but while my count was up and down there was nothing I could do about it except to take lots of rest. Nicky

[crissy22a in reply to NickyD]

Duloxitine, will stop the fatigue and the pains

[SoporRose]

Nikki,

All I can offer is sympathy. I've had ITP for a few years and the fatigue has been terrible. I hope someone on this list will have a solution for us both!

Ruth

[joey777 in reply to SoporRose]

YES - PLEASE...I am weary of being weary and just functioning while everyone else is living !!!!

[crissy22a in reply to SoporRose]

Duloxitine, the fatigue will go

[lindaireland]

Hi I find the best way to deal with fatigue is the past two years i take one berocca boost every day and i cut alcohol right down to an odd glass of wine as i found if i had a night out i would be days trying to get over the tiredness.dont get me wrong there are still days i dont want to get up but find the berocca a little boost.

[22-patience in reply to lindaireland]

What is a berroca lift? I live in the US and don't understand a lot of what's going on in the UK re ITP. We do a lot of treatment for ITP differently here.

[Nikkinackynoo in reply to 22-patience]

Berroca is a multi vitamin type thing. I don't get any treatment for my itp, I got told the treatment is worse than they symptoms!

[22-patience in reply to Nikkinackynoo]

What is your platelet count? I started treatment when my platelet count dropped to 20. Just curious how other countries treat.

[Nikkinackynoo in reply to 22-patience]

The lowest mine has been that I know of is 45, that was when I was pregnant. It normally sits around 80

[alice_sportyauthor in reply to 22-patience]

My platelet count is normally around 15 to 20. I'm UK based. My haematologists tried prednisone but it had no effect for me, then they ummmd and arrrhed for ages until I said, treat me or discharge me, so then they wanted my spleen (they do that much less now) but I said NO. I bruise easily and I'm tired and you want to operate for that !?!?! And then they agreed with me that I function well with my 20 platelets or less (lowest recorded 7) so I have to wear a medic alert bracelet just in case I'm in an accident, go to my GP for bloods now and again, but basically they leave me alone.

[ITPGUY in reply to 22-patience]

In the USA below 30,000 there is concern especially if combined with bleeding.

Below 20 the doctors get much more concerned and more action is taken.

Below 10 a few doctors think you should be in the hospital. My doctor did not. I was dropping down to 14. With a pregnazone tapper I could boost my platelets to 65, but that only lasted a week. Every other treatment was tried and did not work. I had my spleen out and that improved my condition. Now I stay at 35-55 with one dip into the teens when I was sick. My life is normal. I avoid sulfur which can be in rasins and in red wine. Farmers powder the grapes with sulfur to prevent mold and not all of it gets washed off the grapes. Of note, sulfur and tin poisoning can cause ITP. Some people are very sensitive to sulfur. Sulfa was one of the first antibiotics and I had taken some prior to having ITP. I was on a ship at sea and that was all they had as an antibiotic. Of note, my ITP has never caused bleeding only bruising. Some bruises can be large. When I see a large bruise I get my platelets tested.

[Dawnwarry in reply to Nikkinackynoo]

I'm the same - have only had one period of steroids pre op since being diagnosed over 10 years ago. I think you know when you need to seek help

[ITPmummy in reply to 22-patience]

I live in the uk and i went to the USA two weeks ago. My little 2 year old was ill with something else and needed hospital treatment. His nurse told me that the USA are changing their views on treating ITP and starting to follow the uk. She had just come back from a conference over there and was amazed to meet someone with ITP so close to going to the conference.

[Nikkinackynoo]

Thanks for the responses. Does anyone struggle with working? I've found it really hard when the fatigue hits to function let alone work

[22-patience in reply to Nikkinackynoo]

Do you take any kind of natural food supplements? Do you take vitamins? I work and do struggle with bouts of fatigue, too-----I also drink coffee with caffeine in the morning and take my vitamins with breakfast---- which usually begins with a kale smoothie which includes b-complex along with extra vitamin b-12. I believe natural food supplements are very important for itp'ers. And, of course prayer----all itp'ers are included in my daily prayers. Chin up!

[Nikkinackynoo in reply to 22-patience]

I take a multi vitamin. Plus an extra vitamin d3 per day. I should probably try and boots my b vitamins a bit more.

[SoporRose in reply to Nikkinackynoo]

Nikki,

Yes, I struggle with that too. My health problems began just as I was preparing to re-enter the workforce. I shifted my job efforts to freelancing, but keep getting knocked out so that I can't keep up with looking for work. And with my medical bills, we could use the money I'm not making.

[lindaireland]

Hi oh sorry i live in Ireland and you probably cannot get Berocca in USA. Basically it is bought in the chemist it is a multi vitamin that you add to water i find it helps me.

[22-patience in reply to lindaireland]

Blast! I've never heard of Berroca. Will do further search. I think our diets are so important but my doctor never recommends anything. Food and drink does affect ITP---- as, does exercise. Anyway I find it does with me. I wonder if anyone has had to modify their exercise routine after getting ITP? I can look for my platelets to drop significantly if I do half the exercise I use to do----and that includes walking. Very frustrating!

[lindaireland]

Oh I know 22-patience , I find im restricted with certain exercise especially with bleeding. but i try to keep as normal as possible but you are correct it is so frustrating. Im sure any multi vitamin drink would help.

[22-patience in reply to lindaireland]

I find,too, when I use my treadmill, the bruises around my shins and ankles just get very dark and it ,again, takes about three days to somewhat lighten and then it's time for the treadmill again. So you know the sequence and outcome. The doctor says to exercise but it's certainly not enjoyable----- exercise use to be a big part of my life. But now it's the treadmill for half hour and my palates machine. Not that I'm complaining too much---- I am grateful for what I can still do and that I'm alive and kicking '. Patience

[swheels]

Hi, I tried Feroglobin, it has iron and vitamin B12. I should really get some more of them, they do help with the fatigue. It may not work for everyone but it is worth a try.

vitabiotics.com/shop/?produ...

[Elaineod]

Have you had your b12 checked?

[crissy22a]

Crissy22a

yes, get on duloxitine. Omg within 2days of taking them my energy was back, fatigue, pain in my arms the lot had gone.