I am new here and was diagnosed with ITP when I was 22 (3 years ago). I have tried everything and seen good results but here is an overview of my treatment so far:
prednisone (did for 6 months but would spike then drop in counts)
NPlate- worked and maintained around 50k for a year then was inneffective
Ethrombopag - A medication that take 2 hours after eating and 1 hour before eating, when kept to this rule, was stable and worked keeping me around 60k for a year.
However after this meds seemed to work initially they did not maintain.
So I had my spleen out. I had IViG and prednisone to boost my platelets to 86k before the surgery, and immediately post surgery I was at 132, followed by 176k the following day. I then got shingles the week after surgery and my platelets dropped to 1k. They were at 1k for about four days of which I was hospitalized, on about 125mg of prednisone and 40mg of IViG daily until I responded the third day with my platelets going to 5k, then 16k. I had bad pitichiae all over my body during this time, with gum bleeding and even a little rectal bleeding. It was the lowest recording of my platelets to date.
This was about two months ago, after getting rid of the shingles with the meds they provided in combo with a prednisone taper, my platelets surged to 600k. After a couple weeks they stabilized around 260k. I was able to travel ok, did not have any issues with bruising or pitichia, but recently (two months after the 260k count) I got a head cold and my platelets dropped to 12k. I had two days of IViG and my platelets went up to 76k, and this past week I was at 64k.
I feel ok now, and am not on any meds, but have realized that IViG is only effective for about 3 weeks. So I worry if I will need to go back consistently to have this done to avoid prednisone boosts to spike platelet count. Does anyone have any recommended diet changes or ways to deal with this when getting sick? It seems as if though my immune system really crashes when I get sick, and do not want to have to be hospitalized every time I get a cold. I have heard some good things about papaya leaf extract, but have not tried it.
Any help appreciated! This is a great community and I will be responding to others based on my experience with ITP.
Written by
ralph12
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Hi there, I lived in Mexico for many years and there there is a plant called Muicle o Jacobinia that was recommended to me for my platelets. It works great! Not sue if you can find it outside of Mexico but if you google it you will find pictures etc... I would boil 8 leaves in 1.5 liters of water until the water turned either golden or a pinkish color then allow to. LOL. Do not add anything to it and drink that each day for 15 days then stop for 15 days and start again and repeat.
I have a similar story to you although I was diagnosed and had my spleen out at 23 and I am now 31. Give your body some time to adjust to being spleenless - I also spiked after the spleenectomy (to over 1,000k!), then dropped but not as low as you. This means you're one of the "unfortunate" 30% of those who have a spleenectomy whose body adjusts so now your liver is filtering your blood for you, although very slowly in comparison to your spleen. I try to think positively that my body is so clever to adjust ^^)
You should adjust and be fine as your liver can't destroy your platelets as quickly as your marrow produces them. I also got rashes and all that post-op and was really fat and just all round horrible but it's from the meds they pump into you during the surgery. I lived in SA without any medication after the op and also found that when I got sick my platelets dropped dramatically, even emotionally my platelets will drop if I am down.
I moved to the UK and they suggested taking a small dose of penicillin (250mg tablets) twice a day - I initially didnt want to take anything but it makes a HUGE difference in protecting you from getting sick - those colds don't go any further etc. as long as I take my penicillin as prescribed. I also make sure I take vitamins daily, especially a high dose of vit D (10,000mg per day), Omega 3 and also milk thistle to help with my liver. When you feel you are getting sick regardless take high dose vit C (don't take this daily otherwise it's not effective when you getting sick), and echinacea etc. I always have my flu shot every year as well, plus don't forget you MUST be vaccinated against pneumonia and menigitis as we spleenless folk cannot survive if we contract those diseases. Should be every 5 or 10 years.
When I am sick I try take it easy and I also try not to get down and depressed because that seems to make my count drop significantly - there is a link between low count and depression btw as your platelets store serotonin. So it can be a negative cycle but I guess it's down to eating properly. I've investigated loads of diets and alternative therapies to help but there isnt much out there... but once your body adjusts you should maintain 50-80k platelet count at least, although lately I've had a break up and have been so much happier - and suddenly my platelet count is stable at 175, the highest it's ever been since the op. So good health and happiness does the trick for me - although I am a total party animal too but I seem to be all good and I live a normal life. I hope you stabilise soon and all the best!
ITP is an autoimmune disease and our immune system is triggered by inflammation. Inflammation is caused by the foods we eat (and stress, emotional or physical). So the best diet is a low inflammation diet. Avoid processed foods completely and stick to a whole foods diet. Dairy and grains are also very inflamitory and cause gut issues which further inflame the immune system. Take a good probiotic, one that has multiple bacteria strains. Look up information on the autoimmune paleo diet. I am managing with no medication and stay about 160,000-180,000 just with diet and exercise.
I have ITP as well, as a result of having SLE. When first diagnosed close to 4 years ago, my platelets had dropped to 88. They stayed around that number for years. After I developed blood clots and was put on lifetime Coumadin, my platelets started dropping even lower. When they went to 32K, I was put on a massive dose of Dexamethosone. After 40 pills, my platelets went up to 100. In 4 weeks, they were back down to the 30's. I refused to continue with this "treatment," as it caused severe abdominal pain with Prilosec, which I am not even supposed to take because it affects my Coumadin levels. The past few weeks, they started to go up again, without any meds. Last count they were somewhere in the 60's. My doctors now just watch and wait. They know by now that ITP is not treatable or curable same as SLE. I read that green vegetables help - but with Coumadin, they are forbidden to me. Try that! I sure miss my broccoli and spinach and brussel sprouts!
Thanks for your ITP information. It may someday save my life. Why? I may get singles and have my platelet level drop to a dangerous level. I was never told by my doctor that this could happen. Of note, I have had the singles shot.
My count goes up when I get sick. Then drops after I am better. I am thinking of going off all meds. These drs are too scared to sudgest that for de art of being sued. But its our choice and we don’t have to tell them. As long as the count does not drop below 50
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Platelets drops while on Prednisone
In Remission for a year
