Itp/anemia/gastritis - genetic link

Hello all,

I am new to the site and everything I have read is, well, almost relieving to know I am not alone.

At 16 I was diagnosed with hemolytic anemia, 19 was auto immune gastritis and 23/24 was itp. A hemoglobin as low as 2.1, platelets as low as 1. At 29 I have been told I am a unique case again and again. I have been on Ivig monthly since I was 16 with steroids used during any episodes. I believe two blood transfusions total. My anemia is dormant at this time, and the gastritis is constantly monitored with egd's. My itp went dormant a year after I was diagnosed, until this last December when I dropped to 3. Then again in April at 6 and last week at 12. The doctors are not sure if my Ivig is working anymore, but that is discussion for,follow up this week. My employer has terminated my employment due to all the time I have missed in less than 5 months.

I think the hardest part is that my daughter, aged 4, also has itp. And in 2009 we found out my father has it as well. He was fortunate and having his spleen removed corrected his, and though my daughter averages at 20-30 she has not had an episode to date.!

I have had a horrible time with hemotologists and have not been consistently seen by one since 2008. My last one dismissed me as a patient unless I would do rituxin treatments while I was pregnant. Needless to say I was appalled. I have tried seeing others but they have proven to offer no other treatment options. So I have stuck wi my immunologist to have my treatment monitored by someone I know and trust. Unfortunately he retired and the dr who took over for him was a total green horn. I removed myself from his care and am under a fabulous one now.

Sorry to ramble, but my husband and I are having a hard time as the hospital visits are getting more and money will be getting tight, we are thinking to try the disability process since work is clearly a trigger. Any advice, words of knowledge, encouragement, something, is all I a, looking for. I have felt so alone for almost 15 years with theses disorders, I just want to hear, well, read all I can.

Thank you,
Amy

Amy;

You are not alone. Many people here juggle ITP as well as other autoimmune disorders. It can be quite a struggle.

I also find it quite upsetting to hear that your Hemo wanted to use Rituxan during pregnancy. That is totally contraindicated (it was four years ago). It amazes me what comes out of some mouths. It's a good thing you were educated enough to know that was not a good idea.

Have you thought about trying Rituxan now though? It might cause remission and would lessen your medical expenses over time. IVIG can be quite expensive and is only a band-aid. People can and do become refractory sometimes.

There are some inherited thrombocytopenias. It might be worth it to look into them if you haven't already. Treatments can be different than they are for ITP and it's a possibility if you have more than two family members with a platelet problem.

pdsa.org/about-itp/and-families.html

pdsa.org/resources/other-platelet-disorders.html

Thank you sandi,

We have been looking at rituxin again, and I have been reading about promacta. My dad had a dose of rituxin and had a severe allergic reaction, so this makes me very nervous. Especially all the known side effects. Mostly because i have horrid side effects to a lot of medications. We are trying to get up to mayo to see if maybe they can do some genetic testing to see if we can denote the strain/line this is coming from. But all we know for now is that it is more than likely my Greek heritage. My grandmother possibly had it but we are unable to locate records as she and my grandfather divorced, she passed away and Greece has horrid records.


I really appreciate your response and will keep reading the forums to research. It's all scary because it has just been a rough time right now and wouldn't it be easier if someone could wave a magic wand

Mostly just trying to stay optimistic.

Hi Amy, I'm sorry you have so much to deal with but I'm glad you found this site and a good doctor. My son has had Hemolytic anemia and ITP for 23 years. When you are able to work again, if you are in the US you can get "FMLA" so they can't fire you for missing work. I agree with Sandi, you might consider Rituxan. If you are any where near New York City I strongly recommend you see Dr. James Bussell. He is a Pediatric Hematologist but he also treats adults. I hope you find the right treatment soon. Joan

Hi Amy,

You are not alone. I haveITP and hemolytic anemia also. Like Sandi said, lots of us dealing with more than 1 autoimmune disorder.

Sorry you have had such a bad time. That is too bad about your job, what kind of work do you do? Joan is right, you can get some legal help so you can't be fired for health reasons. I have mostly been able to work, I work in a school and have had splenectomy and rituxan treatments during the summer. I once had to take a few weeks off when the hemolytic anemia was very bad and I was exhausted.

Rituxan worked very well for me and had a 4 1/2 year remission from ITP from it.

Sounds like you have had more than your share of bad docs. But, glad you have at least one you trust, it makes such a difference.

Well, no magic wand here, but stay optimistic, a good attitude can really help!

I am one that has reactions to meds too. I also had a rare side effect from Rituxan. What happened to your Dad? Was it a reaction during the infusion?

Welcome to the club! I was diagnosed with Graves' disease at 22 and itp at 27. I do find it interesting that others in your family have autoimmune issues. I am the only known one.in my family. I am sorry about your job. I too have missed many days over the last 4 months, but have been fortunate to have an understanding boss.

29 years olds are not unique cases according to an itp specialist I saw at Cleveland clinic. He sees many people in there 20's and 30's which made me feel better!

I do find it interesting that others in your family have autoimmune issues.

Seems kind of normal to me. I would think it odd if others in my family did not. Everyone on both sides of my family has (or had) at least one different autoimmune disorder. Heck, my twin sister has a different blood disorder than I.
Yes, my twin sister is named Jill.
.

Really? Jack and Jill? How cute.

Yes the genetic link to autoimmune disorders seems normal to me also. My grandmother had RA, my father has celiac spruce, my sister and aunt have autoimmune thyroid disease.

WeirdJack - I am a twin too identical twin - my twin does not have any autoimmune issues. My paternal grandmother had very bad arthritis that I can remember but that is it.

Cindy Ann

Thank you all for the kind words.

My father has had multiple issues over the years. Graves to COPD to type 2 diabetes and the itp. We sadly don't know any further because my biological grandmother is no longer living and her medical records aren't able to be followed. As for his reaction, he had a severe allergic reaction during the infusion. Which just makes me nervous. Maybe it is just that, anxiety, but I fear the worst.

I start follow ups from this last luxury hospital stay (yeah right) tomorrow. Kind of anxious to do the blood work weekly again. Will be doing b12 injections and another iron injection. I have found a hematologist that I am hopeful with. He is young, but he talked to me like a real patient and opened up about other options. So we will probably be typing first to see if we can name it and then go from there with treatment.

Monday was horrid. I walked into the plant I work at and was pulled in by HR, but was just asked if I was ok. It was a misconception on my part. But finding your position posted on careerbuilder along with your pay check being mailed, isn't the most positive thing, so I apologize as I was super emotional about it.

I have been looking at diet stuff next and may move that way. If I can, as changing my diet too much triggered my gastritis or the anemia. Oddly.

Again, I am mostly happy and hopeful I have found this site. Trying to stay positive and prepared.

Good luck!

My time is clearly running thin. I found those familiar red dots forming on my legs again. I am freaking out. I just got out of the hospital, I am not ready to go back. Going to my primaries walk in tomorrow as my blood test from Wednesday clotted. Here is to hoping it is a fluke.

Try not to freak out. Low platelets can be scary, but does not always mean that anything serious will happen. People with ITP have larger, stickier platelets that can work quite well.

Most people with low counts are not hospitalized; sometimes they do that for the newly diagnosed but it's not generally an automatic thing. If symptoms increase, you know what to do to get help.

Radio flyer,


Sandi said it best! I am still at that freak out stage every time mine are low ( I was at 4 Tuesday) but the more I am on here the more I realize that it isn't that scary. It is only an issue if you are having bleeding....which knock on wood I haven't had. Hopefully we can both get to the point where we gets the counts and realize life goes on with high or low counts like many of our fellow itp ers are able to do.