I was diagnosed with ITP April 2018 with a platelet count of 1,000. It's been a rough journey trying different medications. I tried prednisone, dexamethasone, Rituxin and nothing worked. I had an IVIG in the hospital and my counts rose to 12,000. I am currently taking N-plate every week and its keeping me out of the danger zone between 30,000-100,000. The N-plate makes my knees hurt and I'm pretty tired all the time. Occasionally I wait to go 2 weeks and that is why they drop to 30,000. I took a bone marrow test and everything was fine. I'm thinking about getting a splenectomy, but to be completely honest I don't know how I am going to feel if it doesn't work... I've been eating pretty healthy and do fitness activites whenever I'm not sick or my joints aren't killing me. I'm afraid of the long term effects of N-plate going into my body each week. Has anyone been taking N-plate for more than 10 years with no issues? If any could recommend any supplements or alternatives it would be greatly appreciated. 
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Your story was like mine, I tried so many drugs and nothing worked till I went on the fostamatinib trial and my platelets are now steady between 50 and 100. All drugs have side effects sadly and the one I am has given me gastric problems but have learnt to live with it. Having your spleen out is a big decision and sometimes does not work anyway, if you can stick with nplate I would or try something else, there are so many drugs now available and you will hopefully find one that works for you, it took me 18 months and I was in and out of hospital having ivig transfusions. Life is now back to normal but do still have bouts of being very fatigued and eat well and try and sleep as much as I can.
Good luck
Sounds like you both have been through it. The Predisone got me through a year but Platelets were like a Yo-yo up and down two months after I finished. I am on Rituxamab and had third treatment today. The went up after one week from 27.000 to 57.000 but fell today from 57.000 to 28.000. I was hoping for better results but the next few weeks or month I hope will be better.
I don’t know if there is anything in this one but I did one treatment of these tablets prescribed by local nurse and my Platelets did go up slightly during it. Desunin 80014 (one per day) at the time she thought my thyroid might be acting up but it corrected itself. Just an observation I made.
Rituxin did not give me good results either. I went from 20,000 to 22,000 and then steadily went down. I had four treatments and my nurse kept telling me I would see the results later on. 5 months later nothing...
Thank you for sharing Stay well.
My 23 year old daughter was diagnosed with ITP with 2,000 of platelets in Jan of 2017, tried Steroids which were eventually tapered down and discontinued in six months time. Her counts took a dip and then went up a little bit, stayed somewhere between 25,000 to 50,000. I noticed a significant drop with cold, cough or any viral kind of stuff. Every time she had cold or exposed to someone had cold her counts went down and they went up as she recovered from cold, cough and flu like symptoms. She is in medical profession, an extremely demanding career. She was dealing with fatigue with low platelets. Her platelets dropped to 22,000 and she was feeling extremely tired. She was decided to give Dexamethasone pulse steroid therapy of four days with 40 mg of Dexamethasone oral pills, she couldn’t tolerate after third dose on day three. It was stopped due to intolerance with symptoms of adverse effects like palpitations and shortness of breath. However with three days therapy with Dexamethasone 40 mg daily , platelets came up to 97,000. They dropped down to 12,000 after two months. 12,000 spontaneous rose to 40,000 in a week. Then they dropped again to 7,000. At this point she was given IVIG infusion which increased to 42,000. They dropped down to 11,00 to 5,000 in three weeks. She got another infusion of IVIG x2, in two days which increased counts to 170,000. However, she felt extremely tired and couldn’t even do with her daily activities for a week. Headaches were so bad, not relieved with Tylenol. This highest count of 170,000 dropped down to 42,000 in three weeks, then further down to 12,000 in a week. At this point she was scheduled for Rituxamab which was somehow not given to her by Gods grace . She got canceled as she got sick that am and couldn’t reach to infusion center on time. At that time I was frustrated as a mom that a scheduled Rituxamab is cancelled. Fortunately we ran into someone with similar story, who finally tried homeopathy and is completely cured now. Homeopathy took three years of time to bring this other persons counts slowly all the way up to 350,000, now she is off homeopathy meds as well. Hearing that persons story my daughter decided not to continue with allopathic heroic measures of IVIG, Rituxamab, splkenectomy etc. She also started homeopathic meds from India. Her counts were 12,000 when she began homeopathic meds. After 10 days counts went up to 21,000. However after a week she had menstrual periods and they dropped down to 11,000 and then to 7, 000. But she has been feeling good, not tired the way she used to feel before. It’s almost 45 days of being on homeopathy meds with lots and lots of prayers and confessions of words of healing from scriptures. I believe that she is at the cusp of a permanent remission. I will keep you guys posted about her next counts which are due in in next 10 days. I keep observing her for petichiae. She looks great. She is able to study, perform better. God pathy is greater than any allopathic, homeopathic or naturopathic measures! This was the word of assurance I heard prophetically from a prophetic minister who had no idea about us running into someone who got a complete cure with homeopathy and our struggle to make such a risky decision. I heard the word Isaiah 41:10. Fear not, for there is nothing to fear and I will help you. Praise God for His faithfulness.
I pray she goes into remission. Please keep me posted. I've tried papaya extract and tea as well as blood well supplements. I'm not sure if they are working, but I am also taking Buried Treasure B Complete. I highly recommend it. I have a lot of energy when I take it.
Thank you JNSS for your daughters account, she sounds like she has really been through a lot. Steroids I found tough, and I never wore glasses until after finishing them, I got glasses twelve months ago and I feel my eyes have got even worse since, I don’t know if it’s connected but it sure feels like it to me. I slept while on them for an hour here and there over three months.
Did your daughter have much bruising or other bleeding (nose/gums)
Thank God. She never had an episode of bleeding but she gets bruised easily when platelets are below five K. That’s how she knows that her counts are critically low.
I’m glad to hear that your daughter is doing so well on homeopathic treatments. Could you please share what supplements she is on?
I’ve been using papaya leaf extract and find I bruise less. Unfortunately it is very expensive so I’m trying to find a less expensive source. Anyone know of such a place? I’m also taking amalaki, also known as Indian gooseberries. I have been on dexamethasone and don’t want to do that again. I’m amazed that the medical profession is so ignorant about natural treatments: probably shouldn’t be as they are so tied into the pharmaceutical industry.
She also used to drink papaya leaf extract, which didn’t help her at all. She even tried the fresh papaya leave juice, so bitter in taste. She is on a combination of two different pills and powder given by homeopathic physician from India which honestly seems to be working. Keeping my fingers crossed in prayers c faith for a complete and a permanent remission.
She is on Aurum Met, Kaliphos every day three times and a once week dose of Carcinosin powder
Thanks. Will check out.
Hey guys!
She got a repeat counts yesterday (11/16/18) and it is up to 17,000. Which is an encouraging raise from 7,000 on 10/4/18). I mean it’s not a heroic raise like with allopathic steroids or IVIG. She has been feeling good, didn’t have to go back on Steroids or IVIG since September of 2018. I think Homeopathy is doing well so far. She is able to keep up with her busy medical students career so far. Thankful to God! She had an episode of cold two weeks ago which might have messed up with her numbers during her trip to Boston!
Hi. I'm sorry to hear you have had such a hard time. 2.5 years ago I was found to have a platelet count of 21 and it continued to fall, 8 being the lowest. I tried many different drugs, some of which brought a brief improvement but nothing long term. 18 months ago I tried eltrombopag (brand names promacta and revolade). It acts in the same way as Nplate but is taken in pill form which is much more convenient and avoids some of the highs and lows. I have recently gone into remission and I am finally drug free. I am not sure whether this has been brought on by the medication or is just a coincidence, but I think it is definitely worth discussing this option with your haemotologist. Good luck !
Thank you. I was going to try promacta. Did it give you any side effects?
Hi. No, I immediately felt much better when i started taking them and haven't had any side effects. One thing that did happen is that I lost some hair from a patch on the back of my head which fortunately was hidden by my hair. My haematologist thought it was more likely to have been caused one of the very strong immunosuppresant drugs I had tried before the promacta as she had never had another patient lose any hair on the drug. That seems likely as the hair quickly grew back while I was still taking it and I have no problem now.
Hi- I've been taking Promacta for 2 weeks, and platelets have come up from 30 to 110. It is outrageously expensive. Check your insurance. I've had a mild "carsick" sort of headache, and it is playing with my bowel movements a little.
I hope you get in a better place soon. It takes time I found. I was dx in 2015 (at 53 y.o.) with a count of 8. Had IVIG, Pred, & Rituxan. Rituxan worked for one week, next week back to 33. They discussed having my spleen out, but I did not want to go that route except for a last resort. I now stay between 30-58. I was dx in 2017 with Alpha-1 Antitrypsin Deficiency. Experts in A1AD say that people with it often present with low platelet counts. So I'm glad I didn't have my spleen out, as it could be my A1AD causing my low counts. Good luck to you, and weigh all your options before considering a splenectomy. Personally I won't do any more treatments unless I stay below 10.
After receiving the Gardasil shots in early 2009, I was diagnosed with ITP in late November 2009 after having a platelet count of 4,000. I had IVIG treatments every two weeks for six months to try and keep my platelet counts up. I tried various treatments as well, such as prednisone, other steriods, N-Plate, and another outpatient treatment that was blackboxed. During those six months, my platelet count never went over 35,000. After six months of IVIG treatments and others, I decided to have a splenectomy. At the time there was an 80% chance it would help me. In June 2010, I had a splenectomy and everything has been great since then. My counts two to four weeks after my splenectomy were anywhere from 600,000-900,000. They leveled out about six weeks afterwards, and I haven't had any issues since. I have been in remission for 8 years now. I did have to take penicillin every single day for two years, but now I do not take it and I am very cautious if I do get sick. I am now 22 years old, have a very active lifestyle, and try to eat healthy. There are still many days where I am fatigued, tired, and want to sleep all day. I would recommend looking more into the splenectomy, but completely understand being hesitant on the chance that it may not work.
Hi gigi15, I failed IVIG, Rituxan and Dexamethasone, my platelet count was 6 to 15K. I started Nplate weekly injections in October 2010 to maintain my counts between 30 to 80K which ally me to maintain a fairly active lifestyle. I haven’t experienced any side effects, my counts drop with bacterial/viral infections, depression and prolonged stress but recover to baseline after recovery. I’m currently recovering from a prolonged cold, my platelets dropped to 12 to 14K with increased bruising and fatigue for three weeks, today platelets increased to 42K and I receive my weekly Nplate injection and feeling much better.
There’s no cure at this time but research is on going. There are several people in this community who achieved long remissions (10 years) and one, CDmom who claims she was cured with homeopathic treatments that strengthen her immune system (platelets stable at 140,000).
This site has an excellent education section, learn as much as you can about our disease and treatment options. Be well Georgia
Thank you. Have you thought of getting a splenectomy? I'm taking the N-plate too, but its so much going every week getting blood tested and waiting for the shot.
Hi Gigi,
In case it helps I want to share my story with you. I am sorry you are dealing with low platelets, it is a major drag. Wishing you good health.
My story:
I am wondering how many people got ITP after a trip abroad to a third world country? Sadly, I got low platelet issues that they called ITP! I had bruises all over my body just 2 weeks after I came back from Costa Rica to USA in April 2017.
The western doctors said there was no correlation of the low platelets and my trip and to get used to having an autoimmune disease called idiopathic thrombocytopenia, forever. But I knew that I got the issue from something I caught on my trip.
So, I did not believe them. After being very sick for seven straight months, finally I was cured in just one month after I began the following relatively simple eastern approach treatments that the Western doctors don’t understand because they are not educated in eastern medicine.
September 2017 I went to two homeopathic type practitioners that cured me of platelet crashes by October 2017. I continued to go to one homeopathic for several months just to get my immune system rebalanced.
1. I got rid of parasites through a pill from Vitamin Cottage called Para Rid in conjunction with 3 Rife treatments. Rife treatments are ultrasonic waves used to destroy parasite cell membrane wall. (Similar to how an opera singer can break a glass with her voice) It is important to note they could find no parasites in my stool sample but I did it anyway because parasites are often present but undetected. (And my girlfriend made me go!)
2. I got rid of any lingering viruses, fungus and bacteria and rebalanced my immune system through eastern-based homeopathy treatment. The Avitar machine checked my organs using acupressure points on my hands and feet. Once it was determined what my body needed, the homeopathic selected homeopathic pills and elixirs that treated viruses, fungus, and bacteria and rebalanced my immune system that was attacking it. Additionally, I went gluten free.
After needing life saving IV I G and Dexamethasone bursts every 10 to 14 days for platelets as low as 1,000 from April 2017 until last October 2017, I am cured!
This Oct 2018 is my 1 year anniversary since my platelets have crashed and since I have needed IVIG! My platelets are now stable and within normal limits at 250,000. Hooray!
One final thought to share… I had gone to many immunologists begging them to find some infection that they could treat. I knew in my bones I had caught something from Costa Rica and that I did not have a lifetime of an autoimmune disease ahead of me. I just needed treatment for whatever I caught in Costa Rica
One doctor agreed to give me three weeks of antibiotics last June 2017. While I was on the antibiotics my platelets were within normal limits! No cycles of crashes. As soon as I went off the antibiotics in July 2017 the platelets crashing down to 7000, 5000, and 1000 every 10 to 14 days began again. I begged the doctors for more antibiotics and they said no that it was irresponsible.
Again thankfully the eastern practioners gave me homeopathic medicine to treat the parasite infection and cure me!
Wishing Good Health to all.
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