TOPIC:

Hi everyone!
Sorry in advance for my English. It's not my mother tongue.
I'm a newbie here, but I've been reading these boards for some months. Thank you very much for all this information, answers and advice. They've been very helpful.
Now the time has come to ask for advice for me because I'm a bit confused what to do next. Here's my story.
I was diagnosed on the 30th week of pregnancy with count of 8K. Really scared because I thought it was leukemia. Thanks God it wasn't. I had a plus therapy with dexamethasone and in a week I had 109K. I was released from the hospital and in 3 weeks my platelets rose to 211K without any further treatment. I was happy and thought that the story was over. But very soon they dropped to 27K and I had to take 8 mg of prednisone which raised my platelets to 100K in a week and 195 in two weeks. My baby daughter arrived on the 37th week, a bit earlier but perfectly healthy my Hema cancelled prednisone and after labour my platelets only rose to 255K, which was my usual count before pregnancy. I also did an antibody test which showed 190% (the norm is 200%). I began breastfeeding and was absolutely happy that this horror was connected only to my pregnancy and it was over. But, as you may guess, I had a drop again in four weeks to 5K, which was the most severe since the beginning in February 2017. This time I had not only petechiae on my legs but also blood blisters in my mouth. I immediately stopped breastfeeding (which I still don't know was right or wrong. But that was my Hema's idea). This time my antibodies were 670%, three times higher than the norm. I had to take 24 mg of prednisone again. In a week I had 61K in two weeks 215K . So it worked perfectly well for me and I began to taper. It took me three months. My playlets fluctuated between 220-230 and occasionally spiked to 300K. It was until I took the last 1 mg this August. At the beginning of August my platelets dropped to 9K, not so many symptoms, but I immediately took 1 mg again just to avoid bleeding (which I never had but really afraid of) My Hema instisted on my taking 60 mg, because she didn't believe that 24mg would help me this time. I was against because by that time I'd already read a lot of information about horrible side effects of that treatment. I raised my dosage to 2mg and began looking for alternatives. It took me two months. I did blood tests every week. My platelets fluctuated: 10K-28K-13K-42K-57K (machine work) and from 20K to even 115K when a laboratory assistant counted them (not machine). I also did a blood test for h.pylori which came back positive. I decided to take antibiotics for two weeks. In two weeks after h.pylori eradication my platelets spiked to 75K (machine work) and 171K (assistant's count) In a month after eradication I have 95K and 115K. This is my latest count. I'm still taking 2 mg of prednisone, 2 mg of vit C, omega 3, vit B12, L-glutamine, some herbs. I've been also on AIP for three months. Oh, that's really difficult! My mistake is I began taking and doing everything at once and now I don't know what helps me. I think it is h.pylori eradication. But my count dropped a bit again. Does it mean that it didn't work for me? Or do I have to give it a little more time, say one more month? On the other hand I also read that just taking any antibiotics helped people to raise their count temporarily. Is there any sense to take 2 mg of prednisone? Does it help anyone to maintain safe count? How long can I take it without side effects? Are there any people who managed to go into remission on AIP? What should be my next step?
Sorry for this long story! I would really appreciate any help or advice!!!

It looks like you respond very well to low doses of Prednisone. I don't think the 1 mg or 2 mg will do much though, that is a very low dose. Few people would get a response like you did from 24 mg's of Prednisone. Steroids do get old after a while, so you might want to look into other treatment options. None of them are ideal though and all come with side effects (Prednisone and Dex are the worst).

It's also odd that your counts are so different when counted by hand rather than the machine. It doesn't seem like you can get an accurate number from the analyzers and that could possibly be due to platelet clumping. Those are some pretty huge differences.

I've heard stories about people having success with AIP. I've done it myself (not for ITP). It can't hurt to try it for a few months.

Natasha, long stories are interesting.

I've had h-pylori too and have researched the topic pretty well on this forum. Those that have achieved ITP remission from h-pylori treatments have been non-responders to steroids. Those include 'Patrulla' and 'Dean' .

From my study notes, 'MDgal' (a steroid responder) reported spikes in counts due to h-pylori treatments. She also had varied results from going gluten free.

I have read others report of good results with a gluten free diet. LOL, I refuse to try gluten long enough to confirm a reduction in counts. Still others have had extensive allergy tests. They have reported good results with avoiding those specific foods they are allergic too.

Hope this helps.

Sandi, thank you very much for your answer!
What do you mean by "get old"? Does it mean that steroids stop working after a while after the body get used to them?
You are right! The difference between counts sometimes is really odd, but I did a test in a citrate tube to check whether platelets clump. They don't and the difference was that big too. But there was a comment that there were very many micro forms of platelets, which perhaps the analyzer doesn't see.
I've been on AIP since August, 11, for more than 3 months now. I'm not sure whether it helps me with platelets. They fluctuated between 20K-50K for two months. Then I began to eat pepper, potato and quail eggs. Did AIP help you to solve your problem?
Today I've had my next blood test. The result is 137K by the analyzer and 145K by hand. A month since h.pylori eradication. Do you think it's time to decrease my dosage of 2 mg to 1 mg? Or do I have to wait until they are in the normal range? Is it safe to take 2mg for more than three months?

Natasha:

What I meant by 'get old' is that when you keep doing steroids over and over, you get tired of the side effects. You haven't been on high doses so it might not be too bad for you. Staying on 2 mg's for a few months isn't a big deal...it's a tiny dose. You don't have to wait until counts are normal to decrease though, your counts are very close to the normal range.

AIP didn't fix my problem. I have Lupus and I did feel better while I was on the diet, but I quit after 3 months. I want to get back to it someday, but I need some things in my life to calm down first.

Thank you very much, Hal9000, for your help!

Did h.pylori eradication help you to raise counts? At least a little bit or temporarily? Do you mean that prednisone responders can't achieve remission after eradication? It's a shame because I'm a responder. On the other hand I've read some researches like this www.ncbi.nlm.nih.gov/pmc/articles/PMC4112322/ As far as I understand (I wish I knew English better) that woman was a responder for 15 years before successful h.pylori eradication and remission.

My platelets rose from 42K to 137K (analyzer count) and 75K to 145 K (by hand) in a month after eradication. But I'm still taking 2 mg of prednisone and wonder if it's high time to taper or wait just a little bit more.

As far as gluten is concerned I haven't eaten it since August because I'm on AIP which is really strict. Maybe that is the diet which helps me?

I've already considered to check my allergies, but don't know whether the test shows anything while I'm on AIP or whether I have to reintroduce some food to check it?

H-pylori did not raise my counts. As I recall, I waited about 6 weeks to see if it was going to, but nothing. The 6 week waiting period was suggested by a study I had read. LOL, my doctor was getting upset with me during this time.

As for achieving ITP remission with h-pylori treatments. The study you mention is very provocative. LOL, I suspect you have a firm grasp on how to use Google search effectively. In light of that study and trying to make sense of it all, one thing comes to mind. The study talks about different strains of h-pylori which vary by geographic region. I wonder if the described 54 yr old woman had contracted the Asian strain. The last name of one of the authors sounds Asian.

Perhaps those with ITP from the Asian strain of h-pylori are steroid responders. Perhaps those with ITP from the non Asian strain are non steroid responders. Don't know, just a guess with the limited amount of evidence at hand.

I notice your country code is 'RU'. Do you suppose there is a chance that you had the Asian strain? How many weeks has it been since h-pylori eradication?

All of the studies that I've seen also state that Asians, mostly those in China, had better chances of ITP remission after treating H. Pylori. I don't see it happening much here in the US or in Europe. I remember one or two people over the years who had good counts after the antibiotics, but that's about it.

Yes, I know about different strains. I've read those researches too. They also say that not only Asian people have more success but Italian too, as far as I remember. Unfortunately, the success rate in the USA and other European countries not as high as in Japan or China. But even if you have just 1% chance to get rid of ITP I think it's worth trying.

As for my strain I really don't know what to say. I live in Moscow, Russia. Have never been to any Asian countries, but I've been to Italy several times prior to ITP. And of course there are a lot of immigrants here in Moscow. So it's difficult to guess the nationality of my H.pylori

It's been one month since I finished the treatment. I finished on October, 11. Now I know that I have to wait 6 weeks to assess the result. Thank you for this information!

Natasha, your english is quite good. Let me guess. You have a job which requires english skills?

As for the 6 weeks. That was the expected time to a response (a rise), not a complete response (a rise above 100). You seem to already have a complete response.

It would be novel to take a couple mg of Prednisone for awhile after apparent remission. Just enough to prevent another relapse? Sounds like a great idea.

Thank you, Hal! Bingo! I'm an editor and I am to read a lot in English at work! But I'm on maternity leave now and lack some speech practice.

How long do you think is "for awhile"? I'm going to take 2mg until I have 180K and then taper 0.5 mg every three days. What do you think?

I also had an appointment with
an infectionist yesterday. I have really high IgG antibodies to Cytomegalovirus and EBV. They are not active but the doctor suggested treating them because they can contribute to ITP. I'm just a bit afraid to start the treatment because I know that those drugs can decrease platelets. I'm to sure whether it's a good idea to start that treatment now as my platelets are on the rise. On the other hand I know that ITP is a complex problem and can have several triggers. Confused...

Hi Natasha,
Welcome to the group! I'm on the AIP diet, and have been so for roughly 6 months now. I started about 1.5 months after I was diagnosed. I can tell you it did not help with ITP. At least not yet anyway. I intend to stay on the diet, testing the addition of the eliminated foods whenever I feel my body has been stable for at least a week or more. I don't know how long I'll give it. What I can tell you, is that I feel better overall. Also, I've read people with autoimmune are 3x more likely to develop a second autoimmune issue, which I'd like to avoid. Whether or not it will help me avoid it, I don't know. I just know I feel better. I'm also taking large quantities of Vitamin D (10,000 IUs) and Liposomal Vit C (3g), which has only been for the past 2 months.

Hi Ytsejam,
Thank you for your answer!
Wow, half a year on AIP! That sounds impressive! I know that some people follow it for years, but it's very difficult for me. To tell you the truth I began cheating a bit. Just can't live without nuts, but will try to avoid gluten and dairy as long as I can. I can't say that it helped me. My counts did rise a bit, but I had a hike in counts only after antibiotics. I never have any stomach issues. On the contrary I'm suffering hair loss at the moment. I don't know whether it is the diet, prednisone or ITP itself that causes it. In what way did AIP help you?

Yes, I've read that information about higher risk to have one more autoimmune disease, too. Hope that will never happen! Fingers crossed for all of us!

I'm also taking 10000 IUs of vitamin D3. I had checked the level of it before I began. I had a lack of it. I'm also taking vit Easter C (2g), drinking beetroot and carrot juice and sesame oil.
I was so desperate at the beginning that I began to take everything at once. And now when something helps me I'm just afraid to change anything in my routine.

Oh my, CMV and EBV to complicate things. Perhaps I'm confusing viruses. Seems like a read a paper that suggested CMV raises liver (AST/ALT) enzyme values. Was that the case for you? I guess an 'infectionist' tested for antibodies to these viruses? Did the doctor say anything about treating for these viruses while taking steroids? Just off hand, one would wonder if steroids would interfere with successful treatment.

Let me see if I have your timeline correct. You relapsed after about a month before? Seems like one would want to go for at least that long on low dose steroids. Preferably twice that long. But the ITP and virus interaction isn't clear. Does the dog wag the tail, or does the tail wag the dog? Maybe the best to do is treat the viruses and hope ITP will hold off while doing so?

Google is your friend. I only recall reading about one report of someone's ITP not going away until CMV was eradicated. I don't recall reading any reports about EBV and ITP together.

I relapsed at the beginning of August, so I've been taking 2mg for almost 4 months. During August and September my counts fluctuated between 20-40. Then in October they began rising slowly to 75K by hand. That was before h.pylori eradication and maybe AIP began working.

As for viruses I haven't had any problems with them, I don't feel them and my liver (AST/ALT) enzyme values are within normal range. The only reason why I decided to be checked for them is looking for a reason for my ITP and fixing it.

Yes, the doctor tested for antibodies. I have only IgG, not IgM, which means that the viruses are not active. Almost everyone has IgG to these viruses but mine are very high. The doctor said that steroids wouldn't interfere with treatment.

Today I got my CBC: 179 by machine and 161 by hand. Almost 6 weeks since eradication, so I begin taper the dose. Wish me luck!

Ah, ok. I didn't know that about IgG and IgM. Had to look it up. Was there a high/low IgM value for h-pylori? Just off hand, I can't remember my doctor running an IgM test. Just 'alpha' 1&2, 'beta' 1&2, and 'gamma'.

Best of luck with the taper. Fingers crossed. But now I have to wonder about high CMV and EBV antibodies. How will the doctor know when/if treatment has been effective if there are no symptoms - just antibodies?

Natasha22 wrote:

Hi Ytsejam,
Thank you for your answer!
Wow, half a year on AIP! That sounds impressive! I know that some people follow it for years, but it's very difficult for me. To tell you the truth I began cheating a bit. Just can't live without nuts, but will try to avoid gluten and dairy as long as I can. I can't say that it helped me. My counts did rise a bit, but I had a hike in counts only after antibiotics. I never have any stomach issues. On the contrary I'm suffering hair loss at the moment. I don't know whether it is the diet, prednisone or ITP itself that causes it. In what way did AIP help you?

Yes, I've read that information about higher risk to have one more autoimmune disease, too. Hope that will never happen! Fingers crossed for all of us!

I'm also taking 10000 IUs of vitamin D3. I had checked the level of it before I began. I had a lack of it. I'm also taking vit Easter C (2g), drinking beetroot and carrot juice and sesame oil.
I was so desperate at the beginning that I began to take everything at once. And now when something helps me I'm just afraid to change anything in my routine.

To be honest, I cheated once after about 5 months on AIP. It was my daughter's 7th birthday, and I wanted a piece of cake! I may have had a cookie too... I believe my main trigger was stress, and having a diet cause me stress doesn't make sense to me. Unfortunately, I tend to doubt managing stress will actually cause a remission for me, so I'm looking at it more holistically and doing the diet. I have not reintroduced all that well either. I'm finding it really difficult. Eat some eggs, uh oh, I have a headache a day later. Was it truly the eggs? I'm an engineer. I have to repeat tests for them to mean anything to me. I also had tests done that show I don't have much in the way of gut permeability or inflammation in my stomach. So my stomach was already in fairly good shape. I did learn I don't process fats as well as I should tho, so I also take digestive enzymes.

I'm finding avoiding gluten to not be terribly difficult, but that's me. I've made grain free pancakes and enjoy them quite a bit!

All that being said, yes, I have found the diet to be good for me. I didn't think I had stomach issues before either, but now I know what I thought was normal level of gas/bloating/etc, was not really normal. I even lost about 15 pounds while on high levels of Prednisone. AIP can stand for 2 things, Auto Immune Paleo, and Auto Immune Protocol. I'm the latter, which includes other lifestyle changes as well. I exercise more, sleep is very routine, meditation, things like that. In general I feel pretty good physically.

My Vit D level was a "22" when I had it checked. It's my understanding that it's supposed to be 40-50. I'm going to have it rechecked sometime in the next few months. We'll see.

So, while AIP may not have any effect on ITP, I feel like I'm doing the best I can to avoid getting anything else. As you said, fingers crossed for all of us!

I need to get those antibody tests done that you mentioned. I'm curious to see what they would come back with for me.
-Jay

Sorry for my belated answer, but I was waiting for my next blood check to have some news to report.

So, 2 month since eradication and my counts are 220 by machine and 255 by hand. Now I'm taking 1 mg of prednisone for my own peace of mind. I wanna shout "Horray"! But I'm afraid... ITP is so unpredictable. I don't know if I will learn to live without this fear.

As for IgG/IgM for h.pylori I read the following information in Russian: the best way to check whether you have it or not is a breath test (I had a gastroscopic study which is of course very informative but the most unpleasant procedure in my life) But if you have IgG in blood for h.pylori it's almost for sure you have it.

And I decided not to treat CMV and VEB because my counts are rising and those viruses don't bother me at all.

Natasha: First, you have to identify the fear. Are you afraid of the low counts or the treatments?

As long as you respond to treatment, there's no reason to fear low counts. As for the treatments, they aren't always pleasant but you get through it. Most people live perfectly normal lives with ITP.

Hi everyone!
Just came back to say that I'm OK. My latest count was 310K in March. I hope that my remission will last for a long time! All the best to everyone! Lots of platelets!

Great news!

Хороший номер.
О, отлично. Вы вернулись. У меня есть программа на русском языке. Он называется «Переводчик». Он предлагается Google. Насколько хороши мои слова?

Или, может быть, следующее лучше, из-за диалекта:
U menya yest' programma na russkom yazyke. On nazyvayetsya «Perevodchik». On predlagayetsya Google. Naskol'ko khoroshi moi slova?

Thank you, Sandi!
May I ask you a question as the most experienced member of this forum? My husband and I would really like to have one more baby maybe in 2 or 3 year. But now I'm positive that my ITP was induced by pregnancy and gone when my hormones were back to normal in 6 months postpartum. Does it mean that I will have ITP 100 % during my next pregnancy? Is there any chance that it won't happen? Have you heard such stories? I would really appreciate to get your opinion.

Thank you! Your message in Russian is quite good I got it, but it's better to say "хорошие цифры" (khoroshye zyfry = "good digits"), not "хороший номер". Номер means "number" or "room" or "performance" like in a circus.

Natasha:

There is a possibility that you will not have ITP with the next pregnancy, but it's also possible that you will. Most people do not let that stop them and they have additional children.....even the ones who have chronic ITP. They just manage it.

Sandi, thank you for taking time and answering my questions! So, the only way to know is to try, I guess...

Right. I wish there were better answers!

Natasha, ok thanks. 'хорошие цифры' it is for 'nice counts'. Google Translate doesn't seem to do as well with Russian. It seemed to like simpler sentences too.

I've read that Russian is a difficult language to pick up. Do you suppose Russians are such great chess players because their language is so complex? I note right off the bat that there a 33 letters instead of 26. Plus, there are hard and soft articulations to the letters. Lots of possibilities.

I guess languages do influence the way people think. Or maybe they reflect the way people think? Russian is more difficult than English to pick up, mainly because of the grammar. We have 6 cases, 3 genders of all nouns, and 2 conjugations of verbs. I had an American friend who married a Russian girl and tried to learn Russian. He used to say that Russian sounds like a secret spy language which was invented for nobody understands it
English has its difficulties, too. A lot of phrasal verbs, dependent prepositions, interdental sounds and silent letters.

Ha, 'spy' language sounds about right. Now that you mention it, when hearing Chinese, Arabic, and Navajo, they sound terribly 'alien'. Just how many UFOs have landed on earth?

Doesn't seem like we are too far from language 'universal translators' fitting in one's pocket. LOL, nor does it seem that far away to have drugs which re-balance one's immune system so that ITP isn't quite so chronic.