Diet for ITP Patients and is this a curable disease?

[sonia1973]

I am 39 and was just diagnosed with ITP 3 days ago. It is something very new to me. I had blood transfusion and am now on prednisolone for a week.. is there any special diet for this and is this disease curable?

[Hidden]

No diet has been shown to help ITP. Some people will have an acute ITP which will spontaneously resolve in a few months but most, ... 80% of adults will have a chronic course of the disorder which is not curable as such although most will go into remissions either spontaneously or with the use of drugs.

The people who stay here are generally the few who have either just been diagnosed or who are the few serious cases who can't sustain safe counts. Any count over about 30 is good enough.

[sonia1973 in reply to Hidden]

Thanks CamdenGirl...hope mine resolves...

[brandy29]

I was diagnosed 4 years ago and I`m 74. I have been on all kinds of meds , which haven`t made it any better . I have been on Revolade for over a year now and is the only one which helps. My count is up and down a lot, doesn`t seem to stay the samefor any length of time. I use to get Gamma Gobulin, but I don`t receive it anymore. All the best to you.

[sonia1973 in reply to brandy29]

Thanks brandy...keeping my fingers crossed

[NickyD]

HI Sonia1973 What was your platelet count when you were diagnosed with ITP? This is an active support group where we help each other. You may be lucky, as Camdengirl says, and go into spontaneous remission, but for most of us, it is a condition that we have all learnt to live with. It is frustrating that there is nothing pro-active that you can do to make it better. It took me some time to realise I had a blood disorder that had no known cure. You may be lucky and find some medication that works for you. NickyD

[sonia1973 in reply to NickyD]

Hi Nicky,

My platelet count was 31 when I was diagnosed...Hope it goes into spontaneous remission. Thanks again

[NickyD in reply to sonia1973]

Hi Sonia. 31 is a platelet count where you can have a full life. When is your next blood test? What level of prednisolone are you on? Take care. N

[sonia1973 in reply to NickyD]

Nice to hear that. My next blood test is in 4 days time.I am on 30mg Prednisolene per day, taken once a day only. Thanks

[NickyD in reply to sonia1973]

You will probably see swings in your count. My consultant and I think that if I were to have a blood test every day - the count would be very different. As scaryteacher says, it can vary on an hourly basis. The swings in my count have been quite severe at times, going from 2 to 965 in a week. Not many people have this large a swing. My advice at this point would be for you to keep a record of what your count is and what medication you are taking. Dont look for logic in what your body does. I have an excel spreadsheet and I record my count, the medication I am taking and my weight. With prednisolone you could start to put on weight and that can affect your body image. All good fun. NickyD

[sonia1973 in reply to NickyD]

Thanks for your advice. Really helps a lot. Oh gosh, putting on weight! Does it really affect our weight? Was it the same for you?

[NickyD in reply to sonia1973]

I was on a dose of 80mg and that kicked in my appetite big time. It did not go until the dose was reduced to 5mg over a period of many weeks. You may be lucky at 30mg for your appetite not to be affected. I had to buy lots of new clothes because I put on so much weight. Take care. N

[sonia1973 in reply to NickyD]

Oh dear...80mg that's a big dose. Yes I really feel hungry especially in the mornings. Looks like I am going to put on weight as well

[NickyD in reply to sonia1973]

Prednisolone triggers something in the brain that tells you that you have to eat. There is nothing to say you are full. So you end up eating and eating. As the dose goes down, the need for food decreases. Be kind to yourself when you tuck into lots of food, it is the drug that is making you do it. The good thing about putting on weight is that it does come off when the food cravings go. N

[sonia1973 in reply to NickyD]

Thanks Nicky. I am always feeling hungry and yes its not an easy thing to deal with. But since this is a new experience for me I am learning to cope slowly but surely

[NickyD in reply to sonia1973]

My appetite went back to normal when the dose of Pred was 5mg. Take care of yourself. N

[sonia1973 in reply to NickyD]

Hi Nicky, is it ok for people with ITP to exercise. As I heard we are only allowed to do certain exercises only. Any idea?

[holcotts in reply to sonia1973]

I vary between 15 and 75Excercise very important, all my consultants over the years have said. Avoid head injuries. I.e dont box, maybe dont mountain bike.....

But I play korfball and siftball cricket, all fine.

It depends also on what yoyr body does. If yoy bleed a lot at 30, or bruise at 20, be more careful. Avoid road accidents and potential big traumas to your body

[mfuller9220 in reply to sonia1973]

Water aerobics has worked well for me. That, in addition to walking my 10,000 or more steps a day. And drinking lots of water. 60 oz or more. That had worked for me. I was diagnosed with ITP 30 plus years ago. Have been fighting my weight all along the way. With the help of Weight Watchers and their great healthy foods and easy to follow plan, I am now 4 pounds short of reaching my official “healthy weight” for the first time in 40 years. ITP is an auto immune disorder. So focus on foods for gut health because 75% of your immune system starts in your gut. My Platelets fluctuate but seem to stay in the safe some now more often than not. I take large amounts of Garden of life probiotics for gut health everyday for 20 years. In the course of doing that, not only have my platelets improved, but I no longer have INS and Colitis. I am sure it is just in remission too but I have been good for a year. BTW none of this is proscribed by my doctor. It has simply been my own research and trial and error since my doctor sent me out of his office saying there was no known cause and no cure fire ITP. It has been working for me…and I will continue for the rest of my days. All the meds and transfusions they gave me were only a temporary fix

[Chrystalmitchell12 in reply to sonia1973]

all good

[cessie in reply to NickyD]

Hi. I'm cessie I was born 1973. I was diagnosed in 2010. My platelet count was 2 at discovery. I would like to know if it ever completely cures

[scaryteacher]

Hi Sonia, I've had this for 17.5 years now, and am lucky in only having had to take meds three times in that period. Counts do vary as NickyD will tell you - mine fluctuate between 20 and about 80 at the moment, and when I once had a count of 20 and was sent to hospital, they were 29 on the same day four hours later.

It is hard as Nicky says to get your head around the fact that for some this is a chronic disease/disorder that has no known cure, and at times, I do get down about it, but it doesn't stop you doing what you want, I just have to pace myself as it makes me tired, and I have to know when to stop.

good luck - I was so glad when I found this forum as it meant I wasn't on my own with this any more, and that there are people out there who do understand.

[sonia1973 in reply to scaryteacher]

Thank you for the info.This forum is really helpful...thanks again for the input

[sonia1973 in reply to scaryteacher]

Thanks for the advice. Hope you are coping well and yes it is not easy dealing with this as its totally something new for me

[eagle2]

Hello sonia1973, well I have also asked myself these questions. Looking at the PDSA pdsa.org/products-a-publica... doesn't make me exited. No more nice steaks and no more nice wines and beers? And then they say most important is to be happy? How are you dealing with these things? I love nice wine, not quantity but quality. A nice dinner with a nice wine is a joy of life and make me very happy and now is that gone?

Currently Im on therapy with Revolade since 4 days and with that came quite a booklet of diet instructions, not even the dietician here at the hospital understood it. I wrote to GlaxoSimthKline for some clarifications and better instructions.

[sonia1973 in reply to eagle2]

Thanks Eagle2

[5052 in reply to eagle2]

Hi Sonia1973 in Australia Revolade (eltromboag) is the tablet taken once a day my hematoligist said i will need to take this 4 hours before and after food so most people set their alarm for the middle of the night i an hoping to start this medication in the next week my platelet count is now down to 9 on 50mg of prensisone. I have had the choice of either Eltromboag or NPLATE( injection once a week romiplostim) I have decided to take Eltromboag (Revolade) as my count is so erratic that an injection once a week my count might go down before the next week. I will slowy go off the prensisone Will let you know how I go

[Suntied in reply to 5052]

NPLATE holds my numbers up for a week sometimes two weeks it keeps me at about 123000 for a week if I go two I am about 63000. I gave fatigue my bones hurt so tired for 3 days then feel good until next shot

[Zeemonster in reply to Suntied]

Hi Aunties. Do you still have a spleen? Apologies for asking this if too personal.

[mfuller9220 in reply to Zeemonster]

I have had my spleen removed 49 years ago but developed splenosis…A condition where spleen particles transferred around my gut and developed/grew into many mini spleens attached to random parts of my gut that can’t be removed.

[Zeemonster in reply to 5052]

Hi Sonia1973. Is one able to qualify to take Eltromboag or NPLATE if you still have your spleen?

[wjoyful in reply to eagle2]

I’m I don’t understand the no steak thing. I’ve never been told not to eat steak. I am iron deficient so I eat steak once a week. I eat fresh veggies and fruit. The only thing I did was go gluten free. I follow what they say to eat for ITP. I don’t drink alcohol anymore or pop, coffee or caffeinated tea.

[eagle2]

Hello sonia1973 im male50, I just entered this roller-coaster as you, I was diagnosed 4th of April with ITP with platelets level ZERO, Never heard that word before in my life.

I have been through several treatments, you can read on my blog.

itpsupport.healthunlocked.c...

Currently Im trying a diet , more to cope with all the side effects on the heavy treatments, which is gluten, lactose, fatfree , white sugar, no added salt.

I finally found a treatment Revolade that helped me get some counts on platelets , but with this medication it comes a lot of restrictions on food as well.

Reading through loads about this disease it seams to be connections with food intolerance and ITP (still research) . I already know I'm Lactose intolerant I also count in now that Im also gluten intolerant as well.

To make my life easier I just think "Asian". A typical Asian meal is Chicken, rice and vegetables and this meal is naturally free from "gluten, lactose, fatfree , white sugar"

Hope you find a treatment that would work for you.

All the best!

[akreddy1981]

Hi, Try this one to find a suitable diet for your Blood Group Type "d'Adamo-Peter J - Eat Right for Your Type (Blood Groups)". Many Allopathic Doctors do not accept it, but it is simple one without side effects. My son is also suffering with the same problem past 1 year, now he is 1yr 8months baby. I wish you all the very best, god bless with good health.

[mahin456]

Hi Sonia, i am male 44yrs, in bangalore, have been diagonized for ITP, in May 2012, and have been through various treatments through last year. Its really tuff to accept this, and fact that no known possible cure will un-nerve you any time. Tried Steroids, ayrurveds.. natural foods, but count keeps fluctuating from 8k to 50k. My haematologist suggest that any count above 30k u neednt worry.

There is a standard protocol which doctors are using, so need'nt worry. Lead your normal life and remain +ve, thats best way out of it.

Chances of remissioins with any treatment is always there, so jus be happy n positive

[mira84 in reply to mahin456]

Hi Mahin,

My mother has recently been diagnosed with ITP. COuld you please tell me how you are managing this disorder. Do you follow any particular diet and what medication helps you. My mother lives in India and as I understand this is not a common disease, our family is struggling to understand what we could do to avoid any danger to mother's condition. This is new to us and scary. Although her platelet count has been not too bad, 30000 or so. And on good days 50K and with steroids more. There are days she is extremely tired and 2 days back she just went weak and couldf not move and had to be admitted to hospital. She recovered without any treatment, but the entire situation is baffling as the doctors could not identfy any other cause other than ITP after multiple MRI, Xrays ands numerous tests. Any suggestion or experiences would be so good for us as it is comforting to hear that there are others who can manage this well.

Regards

Mira

[dhwani]

if you want you can consult DR. Sunil J parekh from Mumbai...he is the best i have consulted for my dad in last eight years

[sonika1983]

Hi All,

This is Sonika from India (Noida). I have just undergone through the treatment of ITP. I have admitted into hospital when my blood cont was 25K. Blood transfusion was given when it came to 10 K. Now I am on steroid and taking proper precaution. Let me know any other alternative other than steroid. i am putting weight also. Is it permanently curable?

[Suntied in reply to sonika1983]

NPLATE shot helps keep numbers at safe levels for me does give you fatigue achy bones for about 3 days then you feel good until next shot. My nubers stay about 63000 to 123000 with it.no weight gain like predisone

[Suntied in reply to sonika1983]

Prednisone didn't work for me rituxan if nothing worked until NPlate been on it a year. Myself numbers fluctuate from 4000 when I skip a shot but if I get a shot once a week it keeps me higher between 73000 to 222000 more normal ranges. I am tired flu like symptoms for a couple days then feel good until shot. I have had this since last year. It's frustrating but it's keeping me going.

[nitindhureja in reply to sonika1983]

Hi Sonika! I am from Delhi & we are 6 pregnant with ITP, same condition. I would like to have your experience with the same.

8800972220, also we have a whatsapp group of 20 odd people with the same condition ITP. do let me know If you want to be a part of the same

[anil1986]

my daughter is suffered from itp .her platelates is less than 10000

is it curable.what is precaution.

[N786 in reply to anil1986]

contact dr sunil parekh in bombay.

[Suntied in reply to anil1986]

I hear young ones it usually goes away

[Fauziya123]

Hi. Sonal di i need an advise about decreasing. Platelets.. actually my mom is suffering from itp. Disease .from last 2 months. Her platelets down to 20000, 10000 , and even to 3000 also . And for god sake she is not having any symptom like bruises, bleeding, and many. Things. She is not having any. But she needs a diet.. plan . She is not having any weakness but she have lots of stress she can't take the disease out of her mind she got depressed plse suggests me something how do i cure her and take the disease out of her mind. Plse help me..

[nitindhureja in reply to Fauziya123]

Hello Fauziya, I am from delhi & my wife is a ITP patient too with the same as your condition. We have a group of ITP where there are people like you amd me to share their experiences. You may join that and have good advice of local doctors.

8800972220, please let us know

[Seafood]

Don’t

Take prednisone it made me crazy and terrible headaches. It is life changing! No cure. I am on promacta 25 Mg but have to go every two weeks to have blood checked, heart etc. I am always tired and single mom. Everything is high anxiety! I’m always afraid something else is going to happen. Joints ach and can’t do what I could before.

On the positive side. I am not dead, and can still walk and have hair, it’s just the new norm.

You will get used to going through the motions.

Make sure your dr checks for any other auto immune disorders. Try to keep a diary of all your changes as far as health, and mental health. Good luck

[Chrystalmitchell12]

I have itp as well and mine dropped to 20 and I was in hospital for agers and I couldn't do anything at all all I could do was lay in bed and do NOTHING

[GrouchoMarx]

Sorry to hear. First of all, every ITP patient has a baseline count without any drugs. Some people can get as low as zero others up to 40 or more. If you needed transfusion I assume your count were on a single digit.

Depending your budget (or the health insurance you have) there are plenty of treatments and drugs. Some incredibly expensive. You can't go on indefinitely with prednisone.

If you have just been diagnosed. You need to wait 6 months to see if you get cured by itself.