Hello,
I finally had my first treatment - anti D [IV]
Platelets rose from 16 to 240.
heamoglobin remains lowish (88)
I am hoping I have found a cure for my ITP
is anyone else on anti D?
does it keep working if it worked once?
any difficulties in keep having it?
Jen
Hi Jen. Would be interested to know where you live UK or elsewhere. Any medication is not a cure for ITP at the moment, it merely raises the count which will revert back in time. How long depends on the patient. For some it will last weeks or months, others only a few days. As to long term treatment with any drug, again that will depend on how your body reacts. I used to have Ivig which raised my count for a few days and which then reverted back to 10. After several years I was taken off all medication and I have now become allergic to Ivig. I have however lived very happily on a count of 10 for 10+ years and only have medication when my count needs to be above 50 or as last year, 100 for heart bypass. Having said that, for some reason my count has raised to the dizzy heights of 30 for no apparent reason. ITP is a funny old condition as everyone will tell you. So be positive and get on with your life and don't not worry about it. Hope that helps and let us know how you progress.
Hi Sailor nice to know your count has gone up to 30. Hope you were sitting down when you got the news so that you did not fall over 
Nicky
We did HOMEOPATHIC treatment and the results were great.plus proper diet.a lot of fresh fruit juiced&vegetables avoid fats esp pork it can trigger rheumatism.no fastfoods no processed foods.my daughters platelet was 34nlast october but months of homeopathu treatment it reached to 150 last april til now its 190.I hope youll give a try with homeopathic treatment.though for the forst 3 weeks its diffult its the adjustmnt stage though.
Thanks Lauren, sounds really interesting - so can you tell me what you used homeopathic wise - actual potions (apart from the diet?) PLEASE
That would be REALLY interesteting
I am going to get papaya too
By the way - for those who supported me after anti -D raised platelets to 240 they are now, 4 weeks on back to 37.....ho hum
When I was given it, it boosted my count for a very short time.
Dear Hol,
If you've heard of a cure for ITP I would be very interested to know about it. The only treatment my hematologist tried was a massive dose of steroids which boosted my platelets from 32,000 to well over 100 - and in 4 weeks, they dropped back down. If I stay around 54,000, which I have for a few weeks, for me, that's good. I have SLE. It destroys so much in your body. Now my thyroid is out of whack. Tripled in a few months. I am on 125 mg of Synthroid. I see more hair in my sink and on my bathroom floor than on my head. Another symptom is continuous constipation. Being on Coumadin very day - that's not a good thing. Bleeding that doesn't stop. Where is the light at the end of the tunnel??? Seeing my PCP on Friday. He listens, types, and "yes, we'll test you again in a few weeks." I live in the US. There are no cures. I also have a terrible fear of restaurants with high AC. I have Raynaud's as well - 90% of people with SLE have it. I never know when my fingers will turn back from purple to normal. I fear of losing them at times.
So sorry to hear of your difficulties with I ITP. Hope you can see my reply at the top if the page? I am a female & have lost half of my hair after I was weaned off the Prednisone. My doctors had no idea about falling hair ! YOU have to do your own research! I began taking one 5000 mcg of BIOTIN per day. Falling hair has almost stopped. Regarding "Natural" treatments for ITP, try taking THROMP capsules. It can be mailed to you from India. It is derived from PAPAYA. My hematologist is OK with me taking herbal treatments as long as I inform her. Some of her patients have had their platelets raise very significantly. FROM (ONE PLATELET in the hospital), to 300,000! However , it does not work for everybody. Also contact tge GATATRI Hospital in Chennai India.
Good luck & God bless.
Dear 5: I can't take chances of taking anything because I am on Coumadin and just eating a half cup of cole slaw or taking an antacid messes up my numbers. My hair is falling out because of the Coumadin and because I have hypothyroid and I take Synthroid. Also, as we age, our hair gets thinner. So I have lots of strikes against me! Lupus, Hypothyroid, ITP, MDS, Raynaud's, Scleroderma, Sjogren's - ya think I have enough????? I am also 71 and playing tennis 4 days a week - and I am probably insane, as we have been having a terrible Florida heat wave! By the time I get home at 10:00am, the heat index is close to 100! But....it's my only way of fighting to stay strong!
I was on anti D (WinRho) from 2000, when I was first diagnosed with ITP, through 2004. I had infusions about every 3-4 weeks during that time, whenever my platelet count dipped below 40. During the last few months of treatment, the infusions stopped boosting my platelets, and I refused steroid treatment, so I had a splenectomy. I then was in "remission" with counts mostly over 50 for almost 8 years before they came crashing down in 2012. Since then I've had steroids, Ivig, and Rituxan, none of which worked. I now rely on Nplate, which boosts counts temporarily and has the fewest side effects. My hematologists treat me when counts go below 30 nowadays, about every 3-6 weeks. Good luck and hope the anti D keeps working!
thank you virginia, what a journey! did rituxan have side effects then? is ivig horrid?
i am happy if my counts stay above 25, its when they head under 20 it gets a bit twitchy
fingers crossed for the everlasting anti D!
are you in USA too? is the nplate fairly ok for you then? good luck with it all
Jen
and thanks tennissenior, you sound amazing, dealing with a lot, i dont think i would ever have your stamina, take care
Jen
hi my daughter is suffering from it.her lowest was 36 last october.We've been advised from the doctor to inject those immune suppresant but we dint.Instead we undergo HOMEOPATHIC treatment.it wasnt easy for the first few months but the results were amazing.after 6mths of homeopathic treatment platelet reached 150-190 until now.She was being detoxify&cleansed.We gave her fresh juiced&vegetables.no more processed foods and fastfoods.no more sugar for her instead we are giving her organic honey as a sweetener.fresh beetroots with pinepple carrpts&celery.we combine fruits in the juicer w/organic honey and it just taste freat&healthier.Shes better now&looking good.bruises were gone though colds&cough is still there.but shes perfectly okey.
I hope people who is suffering from ITP will be cautious of their food intake.Just eat whats healthy,avoid processed foods,sugar,fats,pork&preservatives.Itbhelps a lot.
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