New to ITP - platelets less than 1, nothing works

Hi. My name is Simon. I am 26yrs old from New Zealand and are usually a fit and active Dairy farmer with no health issues until just over 3 weeks ago.

It all started when i had kidney pains and started peeing blood one afternoon so bocked a doctors appointment for the next day. In the shower before the doctor I noticed I had bruises and blood spots all over my body including in my mouth. The doctor said I probably had low Platelets and sent me straight to hospital. Turns out he was right.

The first blood test came back with a count of below 1 (1,000). They gave me a Platelet transfussion straight away, a course of Prednisone (100mg/d)and 3 days of Intragam (48g/d). This started to make my platelets rise, 4 days later my count was 27 so they sent me home on the course of Prednisone and was to have blood tests twice a week. The first test was ok, around 40 but two days late it was back down to 8 and by the time I got to the hospital the next day it was back to 1 and I had the blood ulcers in my mouth again.

This time they gave me one lot of Intragam followed by 3 days of IV steroids and started weaning me off the Prednisone. The count climbed again and after 4 days it was 31 so they sent me home again. Well with no surprise within 4 days my count was back down to 1 but this time I had a nose blled that wouldnt stop so back to the hospital.

They gave me two options. Splenectomy or Rituximab but recomended taking out the spleen since my count was so low and Rituximab takes a few weeks before they know if its even working or not. Splenectomy it was then so back on Intragam to get the count up. Had key hole surgery 3 days later with Platelet transfussions and everything went well and my count was 76 which I know was probably down to the 4 bags of platelets I got during surgery but it still got me exited. Same old story, next day 40, then 21 then 8 and now today it is 5 and Im without my spleen, not the outcome I was after but Im trying to stay positive for myself and my family. Have had to quit my job since the cows still need to be milked and pull out of the Sharemilking contract I had for next season so things are getting hard with no good news

Yesterday they started me on Retuximab and today they are saying they want to try other drugs and still dont know whats going on at all. In my opinion they are moving too fast so have told them no more until we know how Rituximab goes so am now on the search for natural methods that might help my count. I will try anything before these next drug drugs with bad side effects.

Have been searching the net to try and find information and this site is the best I have come across and have found it helps to read other peoples stories and what worked for them plus all the information this site provides. Are thinking of trying to contact a specialist overseas to see if they have any ideas.

I dont know what to do next or even where to start so if anybody had any information or even just any comments that might help I would very much appreciate it.

Thanks

Simon

Simon, so sorry to hear of your bad past few weeks! that sounds so tough. You've come to the right place for information. The people here really understand what you're going through. Keep reading everything you can from the people who have been there.

Sounds like your doctors are doing what is generally accepted as proper treatment. Good to stay positive and know you had to take action. Guess one positive thing is you didn't have bleeding in your brain, thats what doctors worry about. It is a concern when counts get so low, anyway thats something to be grateful for.

Rituxin works well for a lot of people and with minimal to no side effects. If you didn't have any problem with the infusion thats good. I had 4 infusions of Rituxin in 2010 with no side effects. It brought my platelets up to around 25K for about 6 mos and allowed me to taper off of prednisone. Most people have a much better response than that.

I then started on Promacta (revolade) and its been working well for me. Its one pill per day. I take a low dose 25mg to keep my counts around 30K with no side effects to speak of. I get my blood checked every 2-3 weeks to monitor any changes. Last year I began with 50mg and my platelet count rose in about 5 days, so it acted fairly fast. I quit taking it for a while and my counts did not crash, they held for about 4 weeks slowly declining.

I know how much I feared and resisted trying these drugs especially after reading all the side effects. But I'm glad I tried them. Most of us here have tried several things before we found something we could live with.

Good luck to you!

Hi Simon,

You may want to check out the Natural Treatment section on this site. In particular, read through some of the posts on Homeopathy as a viable treatment. There used to be a mother of a young boy who posted frequently on here. Her name is Patti. She no longer posts, as she decided she was spending too much time on he Internet. I am not sure if you are able to do a forum search on her posts or not, since she removed her profile.

But, her son had 0 platelets for 3 months. The usual treatments did no help him, some caused bleeding symptoms, he got Hep B from an IVIG infusion. Shortly after starting homeopathy, his platelets began rising. He has been in remission for over a year now. Here is a link to just one of the threads she posted in--it may give you hope:
pdsa.org/forum/8-natural-treatment-methods/12127-anyone-treated-or-treating-with-homeopathy.html

My daughter was 12 when she was diagnosed at 5k. She went as low as 3k, and usually stayed in the 5k-10k range. She nearly died from anaphylactic shock reactions to WinRho, then later, an IVIG infusion where a new nurse felt it unnecessary to pretreat her, despite her history. She had been receiving weekly IVIGs for months, bt they did nothing for her counts, only made her feel sick and miserable for half her sixth grade year. We refused Prednisone and were not entertaining a spleenectomy. I was halfway thru my homeopathy training, so that was the course we chose, right from the start. I used some acute type remedies in two emergencies with her: Apis brought her out of the anaphylactic shock within a minute or two (when she had the second

Thank you for you replys.

I have booked a Homeopath appointment for monday so fingers crossed thye can help. Have also started a gluten free diet and Eat Righ For Your Blood Type today. Will be good for my body if not my platelets.

I really appreciate your comments and this site. Haven't found anything at all in New Zealand so this helps alot.

Thanks

Simon

Hi Simon,

Looks like the rest of my post disappeared! Was saying that I used some acute homeopathic remedies with my daughter that quickly helped her when she had anaphylactic shock (Apis) and when in the first week she got a dinner plate-sized hematoma on top of her head from banging it hard on the underside of a table while playing with a cat, a few doses of Arnica stopped the bleeding and pain and reabsorbed the huge hematoma.

My homeopath gave her a remedy that brought her platelets to low normal, though it didn't hold for more than 3 weeks. Later, after she got quite ill from an earache, her intense symptoms guided me to find a closer match, Hepar sulph. After two small doses, her platelets went from 11k to 411k in 4 days or less. The remedy also cured some other longstanding issues and behavioral issues that I had attributed to puberty. They all disappeared within a few hours of the remedy. It was really quite a dramatic effect! She has been in remission since then, 7 1/2 years.

I'm excited to hear that you've already made an appointment, Simon. But, for best results, I hope you are seeing an experienced, classical homeopath and not a Naturopath that has just a little knowledge with homeopathy. If most of your appointment is about the various supplements you need and the diets you need to follow and lab tests you need to have, I suggest you are at the latter. While these are not harmful, for the most part, and may even make you feel better, I have very seldom seen them help much in the platelet department. That's because, all disease begins as a disturbance in the energetic field of the body. It takes an energetic medicine to heal an energetic disturbance. Some energetic modalities are:
Homeopathy, acupuncture, Qi gong, Reiki, Pranic Healing, Tai Chi, Touch of Matrix, are just what comes to mind to me right now, there are probably others.

Western medicine drugs and even herbal remedies and vitamins/minerals are all working at a chemical level. these can correct deficiencies if there are any, but do not act on the energetic plane of the body. They can, however, upset the delicate chemical balance of the body, causing what we know as side effects.
Energetic medicines carry no side effects.

I was surprised at how many homeopaths are in New Zealand. Maybe you already found this one, but I thought this site looked good, and has a large data base of registered practitioners:
www.homeopathy.co.nz/

Hope all goes well on Monday!
April

Hi Simon, sorry to hear of what you have been through these last few weeks. You have definately come to the right place to learn about ITP and from other people experiences. I am also from NZ, sold my farm close to Hamilton last year. We now live in Auckland close to our Grandchildren.

I note you are thinking of trying to contact a specialist overseas, for ideas. I think you will find PDSA may be able to help in this regard. However all the specialists I have met,
have worked in the UK or the USA or often both and hold the appropate qualifications to work there. What I am trying to say is the specialists in NZ do keep up with what is happening in the rest of the world and are aware of the latest ideas etc, in my opinion. The Auckland Haematoligist who I am now under, made sure I knew about this PDSA site, I was pleased to be able to say I was all ready a member.

If you go to the left hand column and click on a persons name you will go to their profile, click on messages and you can send them a Email via the PDSA site. Your Email and their address remains unknown to each participant, but you can share information in private.

Keep reading everthing you can find about ITP, and I am sure you will find the more you learn the more it helps. Please keep us up to date on your progress. Wishing you plenty of Platelets in the future, rgds Benny.

Thank you April for taking the time to write. I cant believe your daughter reacted so quick, I thought it would be a slow gradual process. Im glad she is much better now

It was with a Naturalpath so I will take a look at that website you found and find a homeopath that looks good somewhere near me.

Thankyou again for taking the time to help me, I really appreciate it.

Havent got my platelet count for today yet but feel really good.

Thanks

Simon

Hi Benny

Thanks for your message. Tried to send you a message but it wouldnt go through for some reason. Im from Paeroa so not far away. I think my Haematoligist is really good but just seems like he is working down through a list of drugs till one works instead of finding a cause or something. Since my count keeps crashing every time I think there is something inside me that isnt right that needs to be fixed first before drugs will work. Both colour therapy and the Naturalpath have found the same things (ITP, metals/chemicals/parrisites in the blood, strep plus more). But the doctors wont test for other things because I show no syptoms, apart from bleeding and no plateletes I am otherwise healthy and look/act normal which is at least one good thing.

Will keep trying

Hope that you are doing well now and have got used to the change of life style after farming.



Thanks

Simon

Hi Simon,

I just sent a post to an Australian colleague who may be able to give you a personal referral. I'll let you know when I hear back from him.

FYI--I don't think you can send a personal message until you've made a minimum number of posts (not sure how many that is-maybe ten??). You may be able to receive a personal message, though. Perhaps Benny can try sending one to you. It's nice to have someone close who's going through the same thing.

April

Hi Simon, I read April's comment and will send you an Email via the PDSA site.

I note under "General ITP Discussions" and the heading The Killing of Platelets
Sandi has suggested a paper to read about ITP. I think it may answer some questions for you and give you a better understanding of what ITP is, and how it effects the body.

Benny.

The title of the thread is a little misleading when you say nothing works, in actual fact you haven't tried very much. If / when the homeopathy doesn't work, there are plenty of other things to try. Most doctors wouldn't order a splenectomy that soon so a second opinion may be a good idea. Who knows, you may even have an acute ITP which levels off of its own accord in a few months.

Update.

Upto the 7th May, platelets hovering around 5 for the past few weeks, getting test twice a week, the 7th was 7,000, nose keeps bleeding/mouth blisters ect... Have been going to the colour therapy and naturalpath plus on a dairy and gluten free diet for about 3 or 4 weeks now.

9th May - 4th and last treatment of Rituximab, all went well, no side effects although my skin on my forehead is rough now. Have been feeling alot better this week, nose has stopped bleeding and only 1 new blister in my mouth a day.

11th May - 86,000 BIG SHOCK but ill take it. Didnt realise it would come up so quick.

14th May(today) - 184,000 Dont know what to say now but are really happy. I know things arent over but is far better that I could of ever expected. Have a specialist appointment 28th May.

Thanks for the comments, this site helped alot

That's great! Sounds like Rituxan kicked in right around the time it should. The average remission is about 12 months, although some get much longer.