I'm a 32 year old male and got diagnosed with ITP 7 months ago. My count when first diagnosed was 29. Since then I have been taking prednisone that seems to work for me. First I took 60mg a day for about 4 weeks and my count increased to 74. Then, gradually the doctor reduced the amount to 10mg a day and the count went down to 30. Since then, every time I increase the dose the count goes up, and every time I reduce the amount the count goes down. Next thing I did was consulting a Naturopath and changing my diet. Now, after changing my diet, I take 15mg a day and my last count was 65.
My doctor says that it is not recommended taking prednisone for a long time, and since 7 months have passed it's time for Splenectomy. I feel it's too early. What do you think?
Is it really bad taking prednisone for lifetime?
Has anyone succeeded controlling ITP by chaning the diet?
Thanks
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Nadav
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I would have thought that it was too early to consider a splenectomy seeing as you had only taken Prednisone to date as there are many other treatments available. My course of treatments after Prednisone went IVIG (Intragam), Tranexamic Acid, Cyclopsporine, Dapsone, Rituximab, Dexamethosone until finally I had success using Romiplostim (NPLate) and went into remission. My I understanding is that taking Prednisone for long periods is not advisable.
Hi how did you find revolade? I have been on for 6 weeks now and have awful side effects did you, if so any advice to feel better? I am seriously considering stopping all treatments as after 3yrs can't seem to get it right and feel worse than before I was diagnosed. All advice gratefully received š
Have the counts increased? There were no side effects for me I was enjoying my life and work freely.mainly stop thinking more about ur situation, there are many ppl who are in worst situation in health.
Yes they have. I'm still on steroids though Were you? I'm very pleased for you just wish I felt the same!! Oh well I'll just have to put up with it for now š thanks
ITP goin on 18 years now. You have plenty of other options before splenectomy and I would ask for an indium scan frst to confirm it is infact your spleen destroying your platelets. You may find if you are not too symptomatic ie wet patechie or bleeding that you can live quite well with low counts. Seek a 2nd opinion if neccesary splenectomy is no longer considered first or second line treatment
Hi I have had a splenectomy and it did not work. i did not know about the indium test until after the operation and was not happy. i have had seven different treatments and am now on mycophenolate which seems to have stabilised my count. there are many more treatments for you to try before even contemplating having a splenectomy.
Hi! Sounds to me that you should NOT get the surgery. Your levels are safe enough !! I had itp since 21 and now 28 and had a baby at those levels. I think your body responded well to medication so as of now surgery doesn't seem like the right thing to do. Good luck.
Hi, Nadav, Try and see if they can do the test NickyD had before having a splenectomy. I had a splenectomy and appendectomy when I was about 3yrs old. I'm 44 now and still have ITP, I relapsed when I was 25. I have Penicillin every day to boost my immune system. Prednisolone is a steroid, these strip calcium from your bones which is why they are used for short periods, amongst other side effects. Your count is at a liveable level, I was running steady at 25-30 but it has risen in the last year or so on it's own. I'm not taking anything at the moment but if mine take a dive a short dose of prednisolone brings them back up. The short sharp shock treatment they call it :). Also avoid Ibuprofen, I recently found out it can reduce your count. I was originally told not to have it with the steroids but since asking about them with my consultant, he told me not to take them at all. Just paracetamol, also try not to take aspirin if you can. Hold out on the splenectomy and ask your doc to try other treatments first. Good luck
Definitely NOT splenectomy time yet, particularly taken you have no proof your platelets are being destroyed in spleen. I have 18 years of ITP with a long 9-year remission in-between but splenectomy didn't help me. I never had a test to prove I needed it either. These days science advanced so much in ITP treatment that in fact you can insist to be taken off prednisolone if your count goes down with dosage decrease and have a full right to do so. It is such an old (therefore very cheap) treatment! Then the doctor should try other first, second and third line treatments. But to be honest, looking at what your doctor said, I'd first try to switch to another specialist. ITP Support Association has a lot of contacts.
I don't know about diet and never followed one.
Best of luck and stay optimistic - it is very manageable condition these days.
I took Dexamethosone for 4 days - a massive dose! It brought my platelets up to over 100 - but in 4 weeks, they were back to 32. I felt the stomach pain was not worth it for a "temporary fix." My doctor tends to shy away from a regular diet of steroids, since my white count is normally low from the Lupus. Plus, it may cause osteoporosis. I did ask about a splenectomy, and he advised against it for me. My ITP is caused by Lupus and MDS. My platelets go up and down and my doctor realizes that it's not going to change, so I deal with it. I know when they are dropping. I get a headache and bruises everywhere. But then, at times, they fade. That's a sign they are going up. My doctor said if he took blood every hour, he would get a different count. As long as you are not bleeding (I am on Coumadin), it's just a "number," to quote my doctor.
Thank you all for the information. It is really helpful.
Indeed there are many other treatments to try first. I will definitely wait with the surgery. I've already set an appointment with another hematologist for a second opinion.
You mentioned of you changing your diet and you have the result of an increase count, I wonder what diet you were referring. This interests me, since me too took that path of diet change. Through my readings on ITP and autoimmune disorder, I tried the advice from one Dr Ben Kim of Canada of giving my gut a rest from intakes of animal protein, for six months. It was not totally a zero intake of meat though since I still gave myself the taste of white chicken meat once in a while, and I have not stopped having fish for my regular meal. I did have plenty of greens, and basically none of pork and beef.
I had a count of three (3) when I was diagnosed of ITP in December 2013. I responded well on 4-days drip of IVIG which brought back my count to 200+. This, however, also dropped half my normal count just a week after my IVIG drip, which prompted me to the greens. Btw, I too had Prednisone starting at 70 mg daily dosage, but my hematologist agreed that this did not help me, so he slowly weaned down the dosage by 10 mg then by fives and 2.5 until it was totally Zero in June 2014. It took that long and I'm happy that I did not have the usual side-effects due steroid.
I do have my 200+ count since then and until now. And I still have my greens in the form of capsules which I got from Dr Ben Kim. Check him out, if this interests you.
I do hope that I'm back to normal now and cured of ITP. I also hope that each one here could also find their own cure soon.
That's great, Nadav. We indeed have very similar approach in increasing / maintaining our count. Agree, that we can't really point out to one single factor why our count increases or decreases for that matter. I guess I am just being lucky my ITP was short-lived and my normal count is holding until now. But, PixieKez down here has another observation which I also find relevant. Staying happy and being jolly could mean a lot. I remember in one of my blood drawing schedules...I had a heartfelt burst of good laughter the night earlier. And, literally we were laughing until my jaws ached. I met an old friend, and reminiscing those happy days of yore made me forgot my ITP. That was one high 220+ count registered in my cbc test result the following day. And this was followed by other similar conducted tests later.
Stay healthy and stay happy then. Good luck to everyone!
Fish is well known for reducing platelet count. Careful about basil also, it's said to be stronger than aspirin! Careful of any foods that claim to be good for the heart, usually they mean that it thins the blood. So far oats seem to mean good for the heart and not thin the blood.
Hi fellow ITP survivor My story is similar to yours except I was diagnosed with ITP at 23, went onto prednisone for 6 months, and eventually went through to have a full spleenectomy. I am (female) from South Africa and this is what they recommended, although now I live in the UK and I am aware that they are very much against going the spleenectomy route. When I was on the prednisone my count actually went from 30 up to 100+. But, regardless of the weight gain and moon face that comes with taking prednisone, you really CANNOT stay on this drug for long periods of time. Over time prednisone will make your bones weaker and you will end up with really bad arthritis (I have a friend who suffers terribly from taking it for 2 years as a child). Thats just ONE of the negative side effects and there are many more if you Google it. I've tried natural remedies in the past and diets but not much seems to help besides the usual eating healthy and exercising (but remember if you stay on prednisone you will have to do 'soft' exercise over time as your bones weaken). Funny thing is, for me it seems that my mental state has more of an impact, my counts get higher the happier I am (but thats another story). I was angry at first when they took out my spleen (my op was bad as keyhole surgery didnt work as spleen was too swollen). Plus I was one of the 30% who actually relapsed AFTER the spleenectomy and now my liver destroys some of my platelets but I produce more than my body can destroy - I range between 80-175 count although in times of sickness I have dropped to 50/60. I am the minority though - your chances of being fine and your liver not adapting to destroy your platelets is 70%. And I couldnt recommend getting the spleenectomy more. I know a woman who lives with her ITP (she's in her 40's) and never had the op and I am so grateful as I live a COMPLETELY normal life compared to her - I take a low dose of penicillin twice a day which helps ward off sickness, and you have to make sure you get vaccinated against meningitis and pneumonia. But I drink (sometimes a lot), I smoke (trying to quit!), I don't get sick more than anyone else - completely and utterly normal. I am 31 now and yes, the op hurts a lot and I have a scar but my ITP has been under control ever since and I party as hard as I work - trust me! It's your choice but I am glad to have put my ITP behind me for good. I hope my advice helps but do look into it more good luck x
1. Have you tried other treatments except for prednisone ? or did you have the surgery after 6 months?
2. Did you go through the indium test before the spleenectomy? What was the result?
3. I wonder about the penicillin, is it a pill or an injection twice a day? Because if you have to inject twice a day i wouldn't call it "putting the ITP behind".
Nadav I had my spleen out 15 years ago and do not take penacilin every day . My heamo told me it would rot my gut and cause long term damage. So I only take antibiotics like I would have before..when I get an infection. I also have neutropenia so my white cells get quite low but still not constant penacilin. If you follow good hygene habits and try to have a healthy diet and lifestyle like you do then should you go the surgery route there are different options. Bare in mind every country is different too. Splenectomy is often reccommended in some countries purely for financial reasons. They do not have access nor can they afford repeated ivig nor expensive drugs such as rituxin.
I had my vaccinations but I do not get a flu shot and I Have travelled the world spleenless over the past 15 years without issue and have had rituxin 4 times over 10 years and lead a perfectly normal life even when my counts are under 10,000.Get a second opinion and be informed about your options
I certainly don't want you to rush into a major operation but I felt it important to respond because there is a lot of negativity around the spleenectomy & ITP but when I compare myself to others living with the condition versus my spleenless self, there is no comparison. I lead a perfectly normal 'work hard, party hard' lifestyle.
1. No they only ever put me on prednisone. I've never tried any other treatments and i know there are new options that have come out since I was diagnosed. These options were'nt available for me at that time but I have heard very little about any successful treatments, plus there are the side effects again. I did go for surgery about 6 months after being on the prednisone but a word of warning - the longer you stay on the prednisone the longer it takes for your body to get over it. I was on prednisone for 6 months and it took 1.5 years before my body returned to how it was before I started taking it.
2. I didn't go for this test no, as I mentioned, I was diagnosed nearly 10 years ago and this wasn't an option
3. I take a very small dose of penicillin in pill form morning and evening. This is completely optional - I don't like taking medicines and lived without the penicillin for about 5 years after the operation. The doctors suggested a light dose of penicillin daily as it just gives me that extra protection against germs and I find I get less sick - just stops those colds turning into anything worse. I take it with vitamins and have come to see it as such for myself I guess.
I hope that helps - do investigate your options as I am sure there are other treatments out there that may be successful for you and this is a major operation we're talking about. But in essence I wanted you to know that living without a spleen isnt so bad (for me anyway!), and I havent had to deal with any ITP symptoms since.
Hi Nadav, I have to take Penicillin twice a day as a tablet, simple, no injecting. I was told that when I reached adulthodd I would be able to stop taking it but with Viruses that have developed since then I was told it would be for the rest of my life now. Hope this relieves any fears
Hi Naday, You have received some very positive and importantly, informed comments from others. I have had itp for 20+ years and lived very happily on a count of 10 with intervention of medication only when required for surgical procedures. I am fortunate though, I am not a bleeder. I had a quod bypass 8 months back - no problem. I was back working in three. Splenectomy is in my mind the final option as there are no certainties it will work. It will however leave you without a very important organ. It annoys me when medics go straight for this option, often without any real knowledge or understanding of the condition. My own GP and specialist alway say I know more about ITP than they do.
If you can, go to the ITP convention in Chorley in April. You will meet some of the best and most knowledgeable specialists who will gladly talk freely to you over a coffee or lunch. Money very well spent. Look at the ITP supporters web site for the details.
Finally keep positive, you can live very well with ITP with some minor adjustments by avoiding situations that could cause you problems, like skiing, football,rugby etc. Travel is no problem, although being sensible is important. I wouldn't go up the jungle but I have been all over the far east, middle east and europe with work during this time.
hi Nadav, i too take penicillin twice a day and will do for life. As Sailor says, work to your symptoms. When my count was below 10 i was told it was dangerous for me to fly and I had to cancel a holiday at very short notice. I was very upset about having to do that. But last year I flew from the UK to the states for a holiday,so things are back to normal. Never assume ITP will be cured or that it will go for good. I was in remission, not taking any type of medication and felt on top of the world. Then for no reason, it came back and i had count of zero. I was then put on prednisolone again and the merrygoround started again. The day i had my splenectomy my count was 17,two days after, my count was over 500, but within weeks it had dropped to below 50. I did have bleeding of the gums, petechiae and bruising, so again had to pick myself up and start with another treatment. Rollercoaster is the best way to describe it. As an ITP sufferer you keepp hoping for a treatment that will work and when you do find one, you hope it lasts a long time. Nothing is guaranteed. Stay positive and we will do what we can to support you on this site. NickyD
I resolved my ITP by stopping eating Tahini back in 1996. My count fluctuated for a year between 14 and 240 before I discovered that whenever I ate Tahini my platelets dropped massively! Please do look at diet: I know that dairy products have been implicated in thrombocytopenia though they cause no problems for me. As you know, splenectomy is irreversible - you are wise to take time considering this option.
There is a test to determine if your spleen is the problem. Do the test before the splenectomy. It could save you from a nasty operation and problems there after.
Spleenectomy should be seen as last resort. I'm getting to that point after years of up and down meaning 10 to 22 thousand only. Now after 4 years on pred. 15mg and Aza.100 mg I am now not responding well enough. Point being that my hemo specialist calls 20 count a safe minimum, 30 ideal minimum. He also feels 10 mg pred is max for long term manageable. I also take traditional chinese meds to help counter the side effects of the pred. Btw, eggshells ground to dust is easily consumed and absorbed, and said to be a great source of calcium and a great blood booster. When I read up on it, 2-3 gm per day was suggested.
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My story is similar to yours except I was diagnosed with ITP at 23, went onto prednisone for 6 months, and eventually went through to have a full spleenectomy. I am (female) from South Africa and this is what they recommended, although now I live in the UK and I am aware that they are very much against going the spleenectomy route. When I was on the prednisone my count actually went from 30 up to 100+. But, regardless of the weight gain and moon face that comes with taking prednisone, you really CANNOT stay on this drug for long periods of time. Over time prednisone will make your bones weaker and you will end up with really bad arthritis (I have a friend who suffers terribly from taking it for 2 years as a child). Thats just ONE of the negative side effects and there are many more if you Google it. I've tried natural remedies in the past and diets but not much seems to help besides the usual eating healthy and exercising (but remember if you stay on prednisone you will have to do 'soft' exercise over time as your bones weaken). Funny thing is, for me it seems that my mental state has more of an impact, my counts get higher the happier I am (but thats another story). I was angry at first when they took out my spleen (my op was bad as keyhole surgery didnt work as spleen was too swollen). Plus I was one of the 30% who actually relapsed AFTER the spleenectomy and now my liver destroys some of my platelets but I produce more than my body can destroy - I range between 80-175 count although in times of sickness I have dropped to 50/60. I am the minority though - your chances of being fine and your liver not adapting to destroy your platelets is 70%. And I couldnt recommend getting the spleenectomy more. I know a woman who lives with her ITP (she's in her 40's) and never had the op and I am so grateful as I live a COMPLETELY normal life compared to her - I take a low dose of penicillin twice a day which helps ward off sickness, and you have to make sure you get vaccinated against meningitis and pneumonia. But I drink (sometimes a lot), I smoke (trying to quit!), I don't get sick more than anyone else - completely and utterly normal. I am 31 now and yes, the op hurts a lot and I have a scar but my ITP has been under control ever since and I party as hard as I work - trust me! It's your choice but I am glad to have put my ITP behind me for good. I hope my advice helps but do look into it more 
Is it safe to just take Promacta 50mg every other day since my platelets are high and I don't have a lower dose.
Splenectomy or other options?
