New to website

Hi all.
Just wanted to say hello and say I'm so glad to have found this website. Can't believe I didn't find it so much sooner... Was starting to feel alone out there since I've never met another person that has even heard of ITP.

I was diagnosed with ITP about 5 years ago when I was 21. I was shocked and worried since my grandmother had had lupus in her life. It happened over night it seems. I had the normal symptoms of large ugly bruises on my arms that showed up for no reason. My mother forced me to see a doctor since I was so scared. Sure enough I was first. Diagnosed with thrombocytopenia of a count around 30 0000. From there, it was a whirlwind. Specialists, blood tests, and the dreaded bone marrow test. As this was happening my platelets continued to steadily fall.

First treatment was meant to shock my body into keeping high levels of platelets. Lots of prednisone over a course of a couple of months. It kept my platelets high until they started weening me off prednisone. Finally, I was off the prednisone, sick as a dog from withdrawals, And my platelets were lower then ever, a mere 5000.

Ever since then I've been steroid dependent. I must be on low doses of prednisone,5 mg every other day, to keep me at a safe level so I can live life normally without having to be too careful. This is between 25 000 to 50 000. Some blood tests I'm even way up high around 90 000. Soooo weird. I don't understand what makes them go up. I wish I could find the answer! Anyhow, I've never been offered any other treatments other then taking my spleen which my hemo does not want to do if I can stay at good levels with prednisone. Is it strange that I haven't been offered any other treatments? I am in canada so I wonder if that makes a difference.

The worst of my experiences with ITP was the constant infections I got when I was on high levels, and how sooooo many doctors don't really know much about ITP. Never go to a walk in!!! I've almost been kept in the hospital because my platelets were only 20 000, which is pretty normal for me. Luckily, I don't have a lot of symptoms when my platelets are low, I live pretty much every day at low platelets. Why is that when i see so many people having serious symptoms at low levels?

I do have another question. Has anyone had their ITP progress to lupus. It still worries me that it may happen because of my grandmother. She was never diagnosed with ITP as far as I know, but did suffer from lupus for much of her adult life.

Once again I'm so glad to have found this place. I'm glad I have somewhere to go to ask questions and learn more about this disease.

-samara

Hi Samara. Glad you joined the group. It sounds like you have ITP under control for the most part. Your counts are fine for daily life although the long-term Prednisone is questionable. It's good that you can maintain such good counts with such a low dose, but yes, it is odd that you were never offered any other options. There are quite a few of them. I don't know if it's because you live in Canada or not....we've had others here from Canada who have had other treatments. I'd ask your Hemo about that. It could just be that Prednisone is the only treatment he/she uses for ITP. Maybe another doctor would suggest other things?

As for Lupus; ITP does not turn into Lupus, but ITP can be one of the first symptoms. I was diagnosed in 1998 with ITP and in 2006 with Lupus. Lupus can take a long time to fully develop. If you don't have any symptoms though, I wouldn't spend any time worrying about it since there is a good chance that it will never happen. Most of the people here only have ITP, although some do have multiple diagnoses like Graves, MS, etc. If you are going to worry about it, there are some things you can do to avoid triggering Lupus if you are predisposed, such as staying away from tanning beds, using sunscreen in the sun, avoiding sulfa antibiotics and managing stress. That last one is hard, I know, because life has a way of throwing it at you. Anyway, those are known Lupus triggers so do your best!

Welcome to pdsa! It has really changed my life for the better! I have found that being highly knowledgeable about itp and treatments is highly beneficial, because I have also found that many doctors don't know too much about itp. Also talking to people who have been through what you have is very helpful.

As for what Sandi said, I have Graves' disease and Itp. However, I can't spend time worrying that I will get a 3rd autoimmune disorder because life is too short. Plus I really think stress is the highest contributor to autoimmune disorders.

My advice would be do things you enjoy, have great people around you and live your best life.

Thanks! I will do my best not to stress

Samara,

It will take time but you will get there!