ITP Ups and Downs

[ChrisCal]

I was diagnosed with ITP when I was 3, I have had since then a platelet count between 2-50 (never been tested above 50) typically and tend to sit around 20. When I was first diagnosed I was forever having different treatments done, different medications to boost but what ever was used would be short lived. When I got to 16 I decided to stop anything, I have now for the last 13 years not taken one medication for my ITP and I have very low readings sometimes but I decided its not worth all the medications. My platelet count on my last blood test was 24 1 month ago and I was advised to start taking something but again opted against. For me ITP has not stopped me doing anything, I played Ice Hockey, I play football and do things all the time. I just learn to live with it. Does anyone else do this? Has anyone decided against doing anything? Is there anyone else who has had chronic ITP since being a child until they get older?

[Topography52_-]

Only recently diagnosed and I agree I have no meds just weekly bloods just a SOS plan works for me and obviously what your doing is right for you take care .

[sailor]

What a great post and well done. Like you, I have lived for the last 25 years with a steady count of 10 and no medication for the last 15, except when I have had surgery, more recently for heart bypass. I agree with all that you have said and indeed this course of action is supported by all the best haematology brains in ITP on both sides of the Atlantic. Quality of life without medication is preferable to taking meds which only have a short life span anyway.

Some patients do suffer with fatigue and yes I do get tired sometimes. So take a nap and then get on with life. It is too short at the best of times so make the most of it. By the way, I am now 72, but the same principles apply. I now only have annual checks which suits me fine.

I assume you are in the States but do look at the PDSA and ITP web sites if in any doubt, but I guess not. Keep it up.

[ChrisCal]

No I'm in the UK but just moved to Cyprus now. I have found that just not doing anything has helped e for my mind as well. Yes I have times when it gets worse but generally don't worry about it. I recently read an article in the UK that a 3 day fast resets the immune system so I am going to try this to see if his helps with my ITP will report back after. On day one now so will see how I go!! To everyone who worries about it I know its hard to but try to relax and just take it easy!!

[Topography52_- in reply to ChrisCal]

3 day fast like my food too much : )))

[ManishJain]

What a wonderful inspiring post,stay healthy and fit,eat lots of fruits and fresh greens.

[Tenk]

Amazing and inspiring post. ThAnk you. My brilliant haematologist also suggests no meds if platelets are greater than 10, and possibly none if lower than ten with no symptoms.

I've only just been diagnosed, but am really heartened to hear about your sporting prowess though it all.

[Monty55555]

Hello ChrisCal.

Like the post it was a good read. I also have chronic ITP, but not as a Child. I am 28 and played football for the last 16 years but gave it up as got told I had to stop all contact sports. I have also been told if your count is below 20 you shouldn't fly? I have been on a drug called N plate, which had been working but my count today is 4, so Im going to have some ivig tomorrow as have a couple blood blisters in my mouth. Do you get any symptoms when your levels drop to single figures? I have back in the clinic next week and I know they will be talking about taking my spleen out, but I'm not to keen on that only because the success rate is very low.

Thanks Tom

[ChrisCal in reply to Monty55555]

Hi Tom,

Never looked at not flying with my count below 20, the thought has never crossed my mind at all. I remember as a kid my school was told I had to be treated like glass by one doctor, this was the worst advise. I did the normal things in the end and would get an abnormal amount of bumps and bruises etc but nothing that made me worry. Naturally I am focused on not banging my head so when I play football I make sure if I feel my count is low I don't head the ball. Once my platelets are in single figures I will pretty much be covered in bruises and be bleeding from nose mouth and my eyes get the dots and feet. They wanted to take my spleen out as well but I refused as didn't see the point as I was doing most things I wanted. How long have you had the condition now Tom? Also it can be really down heartening I know as you feel like you cant do anything you feel tired and maybe depressed as well, I have been through all of it but now feeling good. If you want we can talk some more and I give you some tips I have used to help manage with it and also some bits and pieces which I have felt boosted my platelets.

On a separate note, hitting day two now on no eating!! My stomach is grumbling like goodness knows what but not feeling too bad! Hopefully this works and can let you guys know to try it.

Thanks Chris

[Monty55555 in reply to ChrisCal]

Good Afternoon Chris,

So I take it you fly and don't even think about your levels? do you take out travel insurance? I have loved my football, but as soon as ITP came on the scene I got told to stop all contact sport (My Mum suggested walking football, you can imagine my response). when you drop to single figures what do you do to get the level up? when mine drop to single figures I get Blood Blisters in my mouth or gums will bleed so they give me some IVIG to bring them back up. I have had ITP over a year now which is nothing compared to you but I have tried every Drug going, the problem is nothing keeps my levels up they seem to always drop to single figures then I have some IVIG. I am back in the hospital Tuesday (I think to discuss, going to get my spleen scanned.

My mum has got it in her head that Milk causes ITP or doesn't help it, I have stopped drinking milk to see if her theory worked but that hasn't changed anything. what things do you feel boast your platelets? have you changed your diet?

To be Honest at first it was a massive shock, as we had never heard of it, and thought it was life threatening, but when I understood what it is, It hasn't really got me down as I tend not to think about it to much. the biggest thing I miss is playing football.

Do you Drink Alcohol?

Hope you are doing ok on the no eating

Tom

[ChrisCal in reply to Monty55555]

Hi Tom,

Don't ever think about my levels when flying and nope dont take travel insurance either (that may be silly) I haven't stopped eating anything really I try eat a little better in general when its bad but enjoy a nice steak dinner with a beer.

So my general view on my platelets being boosted are, green juice in the morning, usually orange juice spinach and beetroot raw. Breakfast I have eggs as well. Lunch and dinner I eat whatever. Drinking papaya leaf tea helps me in terms of platelets.

amazon.co.uk/PAPAYA-LEAF-TE...

Thats the one I get, leave it to brew with a saucer on top for about 10 mins, tates quite bitter but not too bad. I have two a day.

When my platelets are low my thing is nose bleeds, get them everyday and quite long.

With sports and contact sports, I really don't stop doing anything, I expect to get knocks and end up with big lumps all over my body from most contact but I enjoy it too much to stop. As you have just been recently diagnosed I would suggest not doing that until you have a better understanding of when you are low. I can now pretty much guess with 5 my count before a blood test just be bruising levels and things.

Glad to hear your feeling better about things. If you want to call me to discuss anything let me know and will drop you my number.

Day three now, headaches most the day, feeling like I'm wasting away but going for burrito for lunch tomorrow so focusing on that!!!

In terms of alcohol, nope never stopped drinking and sometimes copious amounts which again may be silly.

Chris

[Tenk in reply to ChrisCal]

Brilliant! I love this attitude. Bring on life!

[ChrisCal in reply to Tenk]

For sure

[Monty55555 in reply to ChrisCal]

Hello Chris,

Who doesn't like a steak dinner I have been told if your levels are less than 20 there is a chance of blood clots.

I will order some of that tea and see how I get on.

so when your levels do get low and you get nose bleeds do you take medication to get your levels back up? or do they go back into the 20's by them self?

I went to watch football yesterday and wanted to be out there so much.

I take it you are British?

I have an appointment to go to Birmingham in August to get my spleen scanned, I have to go 3 separate times.

how did the none eating go? I normally cant go 3 hours without eating let alone 3 days.

Tom

[ITP_1992]

Hi ChrisCal,

So good to read your post and feel such positive energy from it. I too was diagnosed as a child, at the age of 5 and I am now 30. All hospital admissions as a child were treatment free but this could be secondary to being treated outside the U.K, where treatment plans for ITP in children may be different. I have been in remission several times, the longest being 10 years. Then, I had my first admission in the UK 6 years ago where my platelet count was 0 and I was treated with steroids and received platelet infusions. I then had a relapse/flare up about 11 months after this and my platelet count was 1. I was again treated with steroids but this time the dose was high (I believe) and I had horrible symptoms from them. This was 4 years ago and until today I haven't fully regained my strength (weak muscles & joints and fatigue). I have luckily been in remission since then and I plan not to take any medication should a relapse occur. So it was inspiring the read your post as it makes me feel hopeful for a medication free future. Thank you.

[Shneakyoleary]

Do you have other signs when levels are low,

I had bad bruising and was very tired, i could have slept 10 hours, and would still be wrecked.

I see some of you don't take any treatment, and maybe this is something i should do, i am currently tapering off Steroids, 100MG for two weeks and now at 15.

I am still within my first couple of months of all this, so lots of learning still needed on my part.

[ITPAffecty]

Hi Chris, my story is like yours but my ITP was diagnosed 6 yrs back. Am not on any treatment since 4 yrs and I know my counts are in single figures most of the time. I get bad bruising which makes me scared but reading all others stories, I should learn to ignore them. Tough part is convincing and consoling husband and family members when I am covered with bruises and nose bleeding. I am trying to do good job in that lately. Thanks for mentioning about papaya leaf tea, I will try too. I had tried papaya leaf tablet, but didnt help at all. Basically if am sleep deprived and eating too much sugar, my ITP gets worsen.