Newbie/wanted to say thank you

Hello everyone.

I've been lurking since the end of April. I wanted to post and say thank you for all the invaluable information you share. It has helped me tremendously to read all your stories/advice, especially about possible side effects of IVIG and how to combat them. I got all the practical info - premeds, proper hydration, infusion rates - from these boards, not my doctor. I am grateful to have stumbled upon this site while googling ITP.

I’ll try to keep my story brief:
I’m a 46-year-old female, pretty healthy, never had a major illness. I went to a general physician because of petechiae and unexplained bruises. Felt fine except for fatigue. Next day, a hematologist calls and tells me to come in immediately, platelet count at 5.

Went in for more blood tests and she threw a pamphlet about ITP and a prescription for Prednisone at me (60mg/day). Two days later, my count was up to 17, five days after that, 40. Another day later, went in for 3 days of IVIG (during which the pred was dropped to 40mg). Two days after IVIG, terrible migraine, count at 222. Dropped pred to 20mg. for 2 days, then stopped. (Was that kind of fast?)

Prednisone: Hated that evil drug. Crazy thoughts, anxiety, nervousness, fatigue, dopey/foggy feeling, insomnia, night sweats, nausea, racing heart, headaches, no appetite, dry mouth, high blood pressure. All I wanted to do was sit crouched on the floor and drink water. Only on it for 13 days and lost 12 pounds. I didn’t feel close to normal again until more than 2 months after I stopped taking it.

It’s been over 4 months since IVIG treatments and my most recent count last week was 260. Maybe it was acute ITP? Or remission? In any case, I’m going to try really hard not to worry and go back to regular life. And although my count is great, I still keep visiting this site. It’s not just the information. Everyone here is so compassionate, and it’s nice to visit a site where people can truly understand and support each other.

Thanks again to all of you who share your stories, your insight, and your wisdom. It really helped me early on when I was kind of freaking out. A special thanks to Gort/Steve’s advice for those new to all this, and Sandi’s reassuring and kind guidance on the forum.

eileen

Hello Eileen! I'm glad you decided to post. Wow - you had a lot thrown at you at the beginning (literally)!

Yes, the Prednisone taper was fast, but you can do that if you're not on it long. I'm curious as to why your doctor did 3 days of IVIG when your count was 40 and responding well to Prednisone. Kind of overkill. I'm not sure what caused the remission since your stint with Prednisone was very fast and IVIG is usually temporary. Whatever it was, you're doing great!

Thanks for your post, Sandi.

I was thinking recently about that, wondering why my doctor wanted to do IVIG when I was responding to Prednisone. Had I known then what I know now, I wouldn’t have agreed so quickly to IVIG. But I was so new to it all, scared, and confused, so I just did what she told me to. It cost a lot (even with insurance), and I got nerve damage when one nurse didn’t do such a great job putting in the IV. Oh, well. Now I know better.

I did end up going to another Hematologist because I didn’t like how my first doctor rushed me through appointments and didn’t really answer my questions. The second one I went to is much better. He took time with me, didn’t rush me out the door, and seemed more experienced with ITP.

Right now, I’m just stuck with the unanswerable questions, “Why did it happen?” and “Will it happen again?” Grrr…

eileen

Unfortunately, no one can answer those questions for you. Only time will tell. In the meantime, carry on as usual and try to forget about it. Some people get lucky with acute ITP. If it recurs, you know what will work and can just do it again.

Won't it be great if one day those two questions can be answered. I think once they know the why they will be able to answer the will it ever happen again question.

I truly believe that an answer will be found one day!

Hi Eileen. You sound English with the way you wrote the count numbers? I am English and 43 and been diagnosed with ITP since 1994 and in those days I didn't get a pamphlet and I did ask the one consultant if there is anything about it, and he told me only complicated information in medical books. So you actually did rather well to get given a leaflet. Since then like you I have found out lots through this website and on the whole am comfortable with ITP itself as I have bouts as I term it every so often. It is all the side issues which I can find out here because previous consultant was a traditional kind of doc and I felt some questions too petty for him as such I feared him a little bit to be honest because of his traditional approach to being a consultant. He now retired and a the new consultant is modern and approachable and at my second appointment with him dared to askif I have immune or idiopathic because originally I was diagnosed with idiopathic. He said immune so now I can say immune. I didn't want to take it upon myself to call it Immune though I don't use it very often because people look blank. They vagually understand when I say low platelets. So when I want to show of, I say Immune thrombocytopenia purpula (social security benefit forms etc). To medical world I say ITP. to friends I explain about low platelets.

Hope you continue to do well and am sooooo jealous you lost weight. I wish I was so lucky but then I dont really drink that amount of water.

Hi, Sandi - Yup! I will carry on as usual. Although I do admit that I can't help but look at my legs for petechiae every day. Just a peek...

Hi, Milly - Like you, I believe they'll find the answers some day. I guess since it's not such a common condition, there aren't as many resources allocated to studying ITP? I had never heard of this until my platelets took a hike. For the first few days, all I could think was, "WHAT? HUH?"

Hi, Rhiannon - I've visited England (Guildford and London) a few years ago. Does that count? Hee hee. I'm actually a 2nd generation Japanese American (my parents are from Japan) here in sunny California.

I guess I'm lucky that these days we get a lot more information about ITP than those of you who had it years ago. None of my friends/family I told ever heard about this and like you, I just gave the low-platelet explanation. Everyone, especially my mom, wanted the "why" answered. No matter how many times I told her that there is no answer to that, she wanted a reason. She even started speculating that because she thinks I'm "sensitive" and not as "tough" as she is, that I was susceptible to this.

My hematologist said "immune" also. He just said it's what they use now because they know it has to do with the immune system. He also said they've dropped the "purpura" and just say "immune thrombocytopenia."

Thanks for your well wishes! I hope you (and all those here on the forum!) do well also and that platelet counts stay up. Yes, I don't mind weight loss, but I know I lost those pounds in an unhealthy way! Oh my gosh, I drank so much water during that time. I felt so parched. But it sure did help during IVIG infusions. I didn't have to force myself to stay hydrated. I just didn't like having to run to the bathroom every few minutes, dragging my IV drip with me!

The article below is probably the best answer for the 'why' question that I've seen in layman's terms. If you read the Mechanism of Action part and below, you might grasp the explanations.

www.samizdat.com/itp.html

Perhaps different people have different causes and thus not one med works for everyone. I am definitely in the
"Microbial Trigger Theory" group. I had a boil that got way out of hand and ended up with ITP after the boil was gone.

Yeah Sandi, interesting article and it explains a lot but take this one step further and the question then is, what is the trigger for this? what triggers an immune system to suddenly start to attack platelets in one person and not in others.

I think for an answer to ITP this is what needs to be investigated, is it the same trigger for all of us or is it different?

The triggers are different for everyone. For some, it might be a medication or an herbal supplement. Echinacea is known to trigger autoimmune disorders, and people take it without a second thought because it's 'natural'. Viruses and infections can trigger autoimmune disorders. The problem is that sometimes the trigger cannot be traced because the time between the trigger and diagnosis can be lengthy. Say you get sick and go to the doctor for an antibiotic. You get better. Maybe during that time, your counts slowly drop and it's not until 6 months later that the low counts are discovered. Of course you think it just happened because you just found out about it, so you blame the Red Bull that you drank last week. Sometimes it's a succession of triggers that may accumulate over a period of years. Hard to say.

Yes, everyone has different 'causes' and I do believe that makes a difference in what treatments people respond to. There are different antibodies that may make a difference. Some people have destruction problems, some have production problems, some have both. Some people have secondary ITP, some have primary ITP. Some have primary ITP that later becomes secondary ITP. Things change over time, antibodies come and go. The basic thing that we all have is a genetic predisposition. If you have that, all it takes is a trigger(s) and you end up with ITP.

I think mine was triggered by allergy testing about six months before all my symptoms got bad and I finally got diagnosed. And I didn't even find any allergies to explain my stuffy head and cough.
Erica

The lack of concerns for a trigger has been a frustration for us as well. Yes, "these things happen". But sometimes the cause is obvious. Our daughters first bout of ITP in 2004 was due to a tick borne disease - ehrlichliosis (anaplasmosis), though we had to really put our foot down on getting the proper blood work to test for it (she had the symptoms of it but the blood work for the test was diverted by the hematologist for a mono test, another common trigger (she was 11, a tick bite in summer made more sense!)). Once we treated the trigger, 3 weeks after onset, the ITP roller coaster went into remission for years. (Lyme doesn't cause ITP in her, just a FYI on tick diseases).

It came back with head colds, vaccines, mono. The milder the illness, the milder the acute ITP in general. If the trigger is obvious, i.e. a head cold, we went with the flow.

But just last week she had an unexplained fever. It was intense with aches and pains but then went away in less than 24 hrs, unheard of for her. The hematologists don't seem to care about what caused the fever and could it reappear to trigger another ITP episode. Since her counts were down to 2000, we don't want to go there. The ER did do the tick disease blood tests we requested (she was just rock climbing in Colorado, plus lives in tick infested area) but the hematologist washed her hands of them, passed them off to the college health clinic - said she can't interpret them. We're disappointed that she is not collaborating to understand them and ITP. But we've been around the block to know that doctors often don't know how to read the IgG and IgM bands. Some indicate past infections, some indicate current or recent past. So bringing in an expert in infectious diseases makes sense, but not the dumping, washing hands of thinking about it.

When something changes in a stable patient to worsen, it seems obvious to look for a trigger. Maybe because hematologist work so much with cancer and cancer often "just is", they aren't trained to think this way.

Thankfully we know in our daughter it has always been a pretty obvious illness that was the trigger of an acute ITP episode. (yes she's technically chronic since recurring for over 7 years now, but she's usually in remission so I call it recurrent acute. Most times she bounces back with no treatment - if numbers stay about 20K).

Sandpit - maybe she had a 24 hour virus. It happens. If that's the case, there isn't much you can do to prevent your daughter from getting sick.

It's not that there is a lack of concern for triggers; it's just impossible to stop them from occurring. If that were true, all autoimmune disorders would be preventable. There were 88 of them the last time I looked at the list. People are diagnosed with autoimmune issues every day. Every single one has a trigger, or something that started the ball rolling and it's different for everyone. But again, it all begins with that genetic predisposition. To me, ITP 'just is'.

My daughter has Graves Disease, another autoimmune disorder. I have read that common triggers are soy and the hepatitis vaccine. When she was a baby, her doctor wanted her on soy formula to control projectile vomiting. When she was a teenager, her doctor wanted her to get the vaccines. Did one of those trigger the Graves? I don't know, I'll never know. In either case, I unknowingly allowed both of those. We can't go back and change it or reverse it and we can't do anything to figure out if those were the triggers. It just is.

In your daughters case, you believe her trigger was the Lymes. But knowing that can't change things now. It's possible that if she hadn't met the tick that day, something else would have come along eventually and triggered it anyway.

Why would you not question what caused cancer if it happened to someone you know? Would you not wonder about their excessive cell phone use, or the fact that they lived near a farm with pesticides, or the fact that they smoked for 30 years? There are many known causes of cancer and it can even sometimes be more preventable than ITP because we are aware of things that can cause cancer. Of course, good people with healthy lifestyles are diagnosed too, but I tend to wonder why when it happens to someone I know.

Believe me, I know how hard it is to grasp the fact that there isn't a known cause. I spent my first year with ITP looking for that cause. I was diagnosed after a bad cold. If that was my trigger, it happened and I can't change it.

Sandi - yes I agree with what you are saying with the triggers of an autoimmune disease. But also in this case, the triggers of the acute episodes are important to identify to prevent them in the future. Maybe her case is different because remission is the norm. So if we could avoid the acute ITP triggers, the frequency of crisis can be decreased. We do this by getting the flu vaccine because the petechiae from the vaccine is far less than having the flu would be. And paranoia about germs in general.

The thing with the tick diseases is that the ITP can't go into remission if the underlying ehrlichliosis is not cured with a course of antibiotics. (Lyme did not trigger an acute ITP episode). If it was just a 24 hr virus, odd but hopefully over with. I've read similar things about h-pyroli and ITP. If the acute trigger is an infection that needs curing, then it needs to be identified.

So the approach may be different for someone with long stable ITP (not subject to wild swings) vs someone whose ITP is characterized by acute attacks brought on by various triggers.

Has she been tested for H. Pylori? That would be a start, but I don't know that they could test for every virus and bacteria there is, identify it and prevent them in the future.

I'm glad she is doing better now and I hope she goes a long, long time without any illnesses. Fingers crossed for her!

I was tested for H-Pylori and was positive, had a round of three antibiotics and tested again, positive once again had a second round of three different antibiotics, this was May 2010. I was dx with ITP in Feb 2010.

One doctor was positive this was the reason for the low platelets another doctor laughed at the idea ( I suggested that these two doctors have a conversation) but anyway I don't really think that this was the reason for low platelets because in December 2010 and Jan 2011 platelets where still hovering between 90 and 120, a respectable count I know but I am still glad the H-Pylori bug was found and treated because of the problems it can cause on it's own.

The test for H-Pylori is a simple breath test and I consider to be a inexpensive test approx $30.00 in Australia not sure in other countries so maybe that would be a good starting point.