ITP Diagnosis on 7/11/14

Hi all, my name is Bill and I was diagnosed with ITP on July 11. I'm a very active, 41-year old male in Arizona with no history of any health issues. I had started noticing "mystery" bruises on my arms in early-mid June, but hadn't thought much of them. I workout strenuously 5-6 days a week and figured I may have just damaged a something during resistance training or something and that it would heal and go away. Over the next few weeks I was getting bruising more and more on my arms and legs and finally went in to see the nurse practitioner at my general physician's office (he couldn't get me in that day). I figured I'd get my blood drawn, find out I was deficient in some vitamins and strategize about how to work them into my diet and that would be it.

My doctor called that evening in a panic because my platelet count was down to 7k. He offered to call the hospital to set-up an immediate blood transfusion, but at the very least wanted me in his office first thing the next morning and implored me to sleep on a soft bed and to not hit my head on anything. Needless to say, I was a bit worried, but opted to forgo the transfusion until after I saw him.

He was much calmer in the morning (which put me at ease) and recommended I see a hematologist he trusts and he took more blood to corroborate the previous results. I got in to see the hematologist that afternoon and after checking for enlarged spleen (negative) she gave me the ITP diagnosis and prescribed 80mg of prednisone as well as going over future possible treatments should the prednisone not do the job (IVIG, Rituxin, splenectomy, etc). I was asked to get blood drawn every week on Thursdays. My second set of lab results came in a 5k platelets, btw.

After a week of predisone, my count jumped to 50k. After a second week I went to 90k and I was feeling pretty positive about things. The following week (7/31) was a little less bright and my count came in at 83k. Last week the count was at 77k and my doctor scheduled me to come in an discuss (and possibly perform) IVIG. I was not enthusiastic about this at all as it seems from most things I've read IVIG seems to provide temporary results and it's not a very pleasant experience. She called yesterday to speak to me about the cost of the treatment to me ($3200 due to my high-deductible insurance plan) and we have decided to put off IVIG for a while and stick with the prednisone and to get some additional tests performed with my weekly blood draw tomorrow. Luckily I have had almost no ill effects from the prednisone aside from the acne all over my torso.

I'm not disturbed by the cost of the treatment so much as by the nature of how treatment of this disease seems to be done, in general. The platelet count is simply a symptom of some underlying problem, but it seems like my doctor (and doctors I hear about from others' stories) are more concerned with treating the symptom and it seems like they aren't concerned with why the counts are low in the first place. I would love to hear from anyone else who has had similar experiences. My mood hasn't been great the past few days.

tl;dr 41-year old male with ITP for a month. Prednisone brought my counts up, but stalled at 90k and have dropped down to 77k.

If any doctor anywhere on this planet could answer the question, "what caused this" or "how can we fix this", they would be rich. After many years of ITP research, there is not a 'one size fits all' answer. Some people have had luck with diet changes or lifestyle changes, but it's all trial and error and that approach has failed many times.

Most autoimmune disorders only have treatments that help the symptoms but do not cure the disorder. Unfortunately, medical science isn't that far advanced. Until then, we are stuck with what is available.

You're right about IVIG. It's mostly a rescue treatment that can be used when all else fails to get counts to a safe number. By safe, I mean counts above 30k. You seem to be researching things which is a great start...keep doing it. It will save you time, money and side effects down the line.

Just about all of us were in your position at one time. It can take patience and a few treatments to hit on one that you are comfortable with. In the meantime, know that Prednisone could be the cause of your bad mood, in addition to dealing with ITP. Good enough reasons! ITP comes and invades a perfectly good life...takes a while to accept that.

Sandi,

Thanks for your reply. Sorry if I came across as overly negative in my message, it wasn't my intention and I was just coming back to edit my post to keep it from seeming too negative when I saw yours. I see you post here all the time and I really appreciate the time you take to help others out. It's a great thing that you do.

I had switched to a mostly primal diet earlier this year, but with this diagnosis I'm really being careful about what I'm putting into my body. I've cut out almost all grains and refined sugars and haven't had any alcohol (alas!) since. I've read about the links between nightshade foods (tomatoes, peppers (my favorites!) and potatoes, primarily) and autoimmune diseases and am trying to avoid them as much as possible. I'm hopeful I can get my body into as good of a place as possible, it can fight this thing better. It's a little frustrating since going primal I've never felt as good in my life as I do now, but to know there's something going wrong inside...

Have you heard much about the effects of stress with this disease? The first week my numbers dropped down I had some serious personal issues come up that caused me a lot of stress leading up to that blood draw. I'm still dealing with it and I'm trying to keep my stress levels down.

Thanks for "listening" to me prattle on...

I didn't think you came across as negative at all. Just frustrated and a bit upset about the situation. That's totally normal, and you even seem calmer than many others do.

Are you doing Paleo? I did that for 3 months last year and am making an attempt to get back on it. Going Paleo and cutting out nightshades and sugars is tough; there isn't much left. It did make a huge difference in how I felt (also have Lupus), so it has to be a good thing for some. Why you were diagnosed just when you seemed to be making a positive lifestyle change is a mystery. Maybe the spiral was already started and something else tipped it off.

I do believe that stress can play a part in triggering or exacerbating autoimmune disorders. I don't think it would be a quick overnight drop, probably something that occurs more slowly over a period of weeks or months. You could have been slowly dropping and just didn't know it. Most people don't until they get to the point of symptoms.

As for prattling, please continue. That's what we're here for.

I believe stress is the trigger for my ITP. I was diagnosed 10 yrs ago and the past few weeks have been the worst yet. Recently lost my Dad and watching him go through the dying proccess was tough. Prednisone was the first treatment at diagnosis, but that only worked on higher doses. Counts dropped as dose was lowered. Rituxan gave me 16 months of good counts the first time and almost 3 years the second time. I have also had some luck with Platelet transfusions in the past, but not this time. The past few weeks I have been in the 1-8k range. Started Rituxan last Thr with IVIG this past Mon/Tue. 3 more Rituxan treatments to go. Count was 134k yesterday.

Sorry to hear about your father passing and its effect on your health. Glad to hear your counts are up now, hopefully it stays that way.

Welcome to pdsa! I'm a fellow Arizonan diagnosed in 2012. There should never be a need to apologize. We all have our venting posts. Trust me I have had many. Your story sounds similar to mine. Went to the doc and my count was 4. 2 went I went to hospital. It is hard when you are young and healthy and you have this weird disorder. I have found that the treatment to effect me more sometimes than just having low counts.

I don't know where you live in AZ but we do have a local chapter in Phoenix. I think we are getting together in nov. If you have any questions on doctors etc, feel free to contact me.

Valerie

Hi Nomad - sorry you have joined our elite club - hope your count gets and stays good!

Valerie, I live in Tucson, but may be able to make it up for something in November. Is there a website for the chapter?

Welcome here's hoping your visit with us is short because your counts jump up and you forget about us!

Winifred, thanks for the kind words.

I had a good day today! Got my platelet counts from last week and I was back up to 91k! The doctor had also ordered Protein Electrophoresis, Serum and IFE tests, but they are still pending. I had my blood drawn again this morning right before I got my results from last weekweek and my doc called in the afternoon to let me know I was up to 120k. She told me to take my prednisone dosage down to 60mg from 80mg.

I'm going in for a CT scan tomorrow afternoon. Since I kept asking questions about where this disease was coming from, she ordered this to verify there aren't any issues with my lymph nodes. Apparently they can sometimes trigger secondary ITP? Hopefully all goes well.

I'm excited about tapering the prednisone. I know compared to many I've been very lucky regarding side effects, but I know it's been affecting my mood somewhat, giving me some slight headaches and causing some joint stiffness. And don't get me started on the acne on my torso!

I hope everyone else had had a good day, as well!

Good new, Bill!

Prednisone tapering can bring a whole slew of other side effects - withdrawal. Those can sometimes be more difficult than the higher doses. Just be prepared. Some people get through it better than others, so maybe you'll be lucky. The lower the dose gets, the harder can be.

As for the lymph nodes, sometimes a lymphoma can cause low platelets and in that case, it's not really ITP. It's pretty rare for that to be the case, so try not to worry about it. Infections can also cause enlarged lymph nodes and can trigger ITP, but you may never know if that was the actual cause.

Just a quick update:

I saw my hematologist last week and went over the results of my CT scan as well as my platelet counts. As expected, the CT scan came back negative for lymphoma. The only thing found were some small benign cysts on my liver. My platelet count came back at 100k (down from 120k) after tapering prednisone from 80mg to 60mg. I thought this was great news.

I got better news today when my hematologist just called with my new count. I had my blood drawn yesterday and my count was at 127k! She gave me the go ahead to taper my prednisone down to 40mg. Needless to say, I'm very excited. I hate taking medication of any sort...

I hope you all have a great day and weekend!

Good news all around! I hope it continues.

Yay! Good news fellow Arizonan!

It's been a while since I posted an update, so I thought I would post something today.

I've been off of prednisone for ~4 weeks. My platelet count after 1 week off was 102k (down from 113k the week before at 20mg pred). The doctor asked me to get another blood draw in 2 weeks, so I had it done Tuesday of last week. I went on vacation with the family that afternoon and never heard about results from my hemo, so I called yesterday and was informed I was at 126k. I'm very excited. My next blood draw isn't for another month.

A couple weeks ago, I went by my old doctor's office and picked-up results from a blood test I had done several years ago and my platelet counts were at 137k then. Perhaps I've always been on the low-side platelet-wise. My sister and I have had conversations in the past about how quickly she would stop bleeding after donating blood and I was the complete opposite.

I know I'm not out of the woods, yet. I've been on a pretty strict whole foods diet since this started (actually before, but I've restricted some foods further since) and I fully intend on sticking with it. I don't have any evidence of direct causation, but I figure this way of eating makes me feel really good and just logically seems right, so why change? I'm going to experiment with bringing nightshades back into my diet (tomatoes and peppers primarily, potatoes to a lesser degree) and see if my numbers are affected.

Thanks for the update. It's always nice to see continuations of progress...some people forget about us.

You're right, counts could drop at any time but it looks really good for you so far! It is possible that your normal is in the 120's; that has happened with quite a few people over the years. They just monitor every once in a while and if counts stay in a safe range, they go on with life.

As far as diet, a lifestyle change is never a bad thing!

No one said anything about changing my eating habits what should I be eating to help my levels. Yess Stress will do it as well I learned that the hard way. What is Paleo?

There really isn't anything you can eat that will raise platelet counts. Some people find that if they eliminate certain foods, their counts respond. It could also be a coincidence.

Paleo is a lifestyle diet that eliminates gluten, sugar and dairy.

Because I have lupus, my body has strong auto immune reactions to inflammation. Some foods give me serious intestinal problems and if I eat them I get a platelet drop in response to the inflammation.
Erica

Oh OK I understand now my taste has been different nothing taste the same so changing eating habits may be a good thing for me.

Prednisone can do that. It makes everything taste bland for a while. I used to eat hot salsa by the jar just to be able to taste something.