Newly Diagnosed - What's Next

Nine days ago I was diagnosed with ITP. I started seeing a Naturopathic doctor in November and a few weeks after he put me on very high doses of vitamins and supplements, I noticed I was bruising. At first I thought it was part of the healing practice and then one morning I woke up with black sores in my mouth. I went to the doctor and they said they had never seen anything like it. Thought if was a virus. The went away but the bruising continued with up to 50 at one time. I thought if was from the Vitamin E and the Naturopath agreed. I went off it but they continued so I went off all the supplements. I spent a week on vacation with a splitting headache and when I returned I went to the doctor. They did the blood test and sent me to the hospital as my platelets were at 2K. After 100 MG a day of prednisone and 3 Intravenous Gammaglobulin Therapy my platlets are still 10k. I am getting a bone density test this week and then starting a new therapy.

A few questions:

Is there any evidence that taking mega doses of vitamins or supplements can bring this on?

How do you adjust your lifestyle? So far my husband doesn't want me to drive alone. Luckily I work from home so that's not an issue. He doesn't want me to cook? He's generally concerned about everything.

How do you manage the depression related to being poked and proded? Today I've been crying off and on because the IV's were so hard to get in and hurt so much!

Welcome to the site. You'll get lots of good information here.

My recommendation to you is to make sure that you have a doctor that is familiar with ITP. Not all doctors, and not all hematologist/oncologists are, so don't be afraid to get a second opinion.

High doses of vitamins probably didn't cause your ITP, but Vitamin E and other supplements might have reduced the ability of your blood to clot, making your symptoms worse.

It's great that you have a husband who is concerned. If you have garden-variety ITP, you don't need to avoid driving or cooking, but juggling knives is not recommended!

You're probably getting a bone marrow biopsy, not a bone density test. If the only thing out of whack on your CBC is your platelets, the BMB probably won't tell you much. What new therapy are you starting?

What supplements were you taking? Some have been known to trigger autoimmune disorders, so that is a possibility. I doubt vitamins would cause it though.

I didn't really adjust my lifestyle. My hemo told me to keep doing my normal things, even below 5k, so I did. The only time I changed my routine was when I chose not drive to work in an ice storm...I waited until it melted first. You have to just do whatever you feel comfortable doing though.

I was never really depressed about ITP. I didn't like the treatments and Prednisone drove me nuts, but I just decided to keep my life as normal as possible and that helped. Pain from IV's and needles are temporary and I just tuned myself out until it was over. I have always thought the dentist was worse!

You'll be okay. ITP can be chronic and at first it seems horrible and life-altering, but many people live perfectly normal lives with some minor adjustments. Keep reading and keep learning...that will help in the long run.

welcome plustig. I can relate to the depression & and wondering how to change your lifestyle. After 3 years of counts consistantly 30 and below I can tell you it gets easier. At first I took off work and pretty much just sat around. That didn't last long as being a wife and mother didn't make that plausible. And I learned that you only need to pay more attention to what you do when your counts are so low. It gets easier, promise. Prednisone didn't do a thing for me either. The poking and proding gets easier too, I still go for weekly blood draws, still can't watch them put the needle in but once it's in it's kinda "fun" to watch!

Wednesday I am scheduled to get a bone marrow biopsy and the more I read I wonder what difference it will make. What does it tell us? Should I just try the new therapy which I don't know the name of and see if it impacts before I get a bone marrow biopsy?

Has anyone had a bone marrow biopsy and did it impact anything?

This site helped so much and today I decided "it is what it is" and life goes on. Thanks so much. Do you take any meds or do any therapy now or just monitor platelet levels?

I am really happy that I found this site as well! The reassurance that life goes on has been HUGELY comforting.
It would just be easier to get to if I didn't have all of these doctor's appointments every day! haha

I hear you on the "loved one doesn't want [you] to cook" front. For some reason, my mother has gone out of her way to stock my fridge with easy snacks and finger foods to keep me out of my kitchen. Between that and take-out I haven't cooked a single meal since LAST YEAR.

You gotta love early January for it's ability to type that for just about anything.

The bone marrow biopsy doesn't tell much. It can exclude other disorders, but won't tell you anything about ITP.

A lot of us have had it done. I only did because I was newly diagnosed and didn't know any better. It is recommended if a person is over 60 or thinking about splenectomy.

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Hi there! I am right with you on the diagnosis trail. I go back to my doc on the 21st to see if the prednisone has increased my platlets enough to diagnose as ITP or if they are going to do a bone marrow biopsy.

You sound like you are doing well! Just hang in there and become an educated patient. Do not be afraid to question your doctor. I usually take multiple index cards with questions in for him to answer. He has been great. Stay positive and happy.

BTW, I just my possible ITP or whatever with my wife when I want something special to eat or for her wait on me just a bit. LOL Just throwing that out there for you!

Jeffrey71

I decided against the Bone Marrow Biopsy and am hanging low until I get a second opinion from a different Doctor on Friday, January 18. Don't know what my count is. Was 10 on Saturday after ivga.
Hate the prednisone! Makes me depressed and wakes me up for 3 hours every night. Want to go off it and try natural therapies.

No one likes Prednisone and I can't blame you for wanting off of it, especially if there is no benefit. Being newly diagnosed though, it's a bit soon to go the natural path. Didn't you say you were doing that before you were diagnosed? Give the doctors a chance first and after you feel comfortable with ITP, give something else a whirl.

I do like your attitude - "it is what it is". That is one of my favorite quotes!

Hello Plustig,

To contact anyone on the forum by sending a private email, first, be sure you're logged in.
Then click on their name to the left of their post.
At the top of that page's menu, click on MESSAGES, then SEND EMAIL.
Not sure if it's still the case, but you used to have posted a minimum number of times (I want to say, 10??) before you could send a private message--probably to avoid spam being sent.

I would be glad to help you find a good homeopath in your area if I can, and can send you some guidelines and questions that you may want to ask or look for. Because homeopathy is not a licensed profession in most states currently, you do need to do your homework to find someone who is good and experienced. You'll also find that one person's "homeopathy" may not be the same definition as another person's idea of "homeopathy". I see a LOT of confusion on this all the time.

My own daughter was 12, when she was first diagnosed with ITP. (Though, in hindsight, we are fairly certain that her platelets had probably been low, 6 months prior to diagnosis.) She was trapped in the center of a massive wildfire at that time, which I feel created an enormous amount of stress in her. (She survived, but as it was the epicenter, many people and animals did not. Thousands of acres and homes were destroyed.)

She did not respond to any treatments we tried, and she mostly lived with counts of 3k-8k. As I was already in homeopathic school, and had used homeopathy for yearswith my family, that was my first choice of treatments. It took a few months to hit upon the best remedy for her. But, when I did, her platelets went from 11k to 411k in less than 4 days! And, she has remained in remission since then, 8 1/2 years later, with no treatments whatsoever, other than an occasional dose of her constitutional remedy.

But, better than her platelets normalizing, the changes we saw in her behavior, general mood and overall health were nothing short of miraculous! As anyone with a young teenager knows, they aren't always the easiest to live with. Her remedy smoothed the journey quite nicely.

Best wishes,
April

Good Evening!

I agree with Sandy. Give the doctors a chance to do their work. This is a slow process. I started on mine in October after a routine physical and just before I ran a marathon. I am still "in process" on the diagnosis.

Now for the Prednisone. I say a prayer everyday for anyone and everyone on it. It is a rough medicine. If it works. great! I have gained 45# since I started it around Thanksgiving. I will have a lot of training to do to get it off.

You hang in there and keep a positive attitude! It is not a set back, it is just a little detour!

Jeffrey71