Anti-D

Have anyone tried Anti-D (then a higher dose than usual - I think it was 5 times the dose that a pregnant woman get.. and you get it injected with a needle) ? I've tried it once, for 4 years ago, and now my bloodplates are pretty stabile at 50. I haven't had treatment since.

I have also noticed than when my bloodplates decrease, maybe because of an illness, they always increase after a day or two without doing anything.

I have also heard that you can get arthritis and diabetes mellitus 1 of ITP. Why is that ? Is it because of the chose of treatment ?

.. and after my experience, I can force my level of bloodplates to increase by doing fysical exercises

Sorry if it's spelling mistakes in my text. I'm not from an english speaking country

Anti-D is known as WinRho in the United States and (I think) also as RhoGam in some countries. It is very widely used for ITP, and if you search this list under that name, you will find much information.

I had three treatments with it a few years ago, before I finally had my spleen out. The treatments raise my platelets for about one month each, but made me quite sick for a day afterwards, withs severe chills and migraines.

I only speak and write English, so your english is much better than my anything else, so don't worry about the spelling. Welcome to the group and congradulations at being stable at 50. Most of us don't treat until we're in the 30 range, but it's always good to have a plan should that happen.

1. Anit-D
I use WinRho as treatment and I get 8 to 12 weeks between treatments. It can be given over a couple of hours as an infustion or as a quick push. After several treatments, I can minimized the chills and low grade fever, if they give me a small dose of benedryl in the drip, then an infusion over about 30 minutes. I still feel slightly flu like for a few hours but them I'm fine.

2. Platelets going up & down. I've had hemotologists tell me that in "normal" people they can change as much as 30,000 in a single day. Since most of us have some autoimmune condition underlying our ITP, it's common to see a rise or fall when the immune system is fighting an illness.

3. Arthritis, Diabetes. If you have one autoimmune condiiton (ITP), you have a greater chance of getting another one. Most treatments won't cause you to develop the others. Long term use of high dose predisone can cause calcium/bone loss and causes the blood sugar to rise which may accellerate the onset of diabetes or arthritis.

4. If physical excercise was a treatment, there would be a lot more of us in really great shape, unfortunately there is no scientific or antidotal information that says it helps. However, doing things for overall general health and reducing the items from your diet and environment that you know your allergic to may show long term benefits.

Thank you for answering !

Bunnie, I'm new here and only recently diagnosed. I still have high counts, above 100K (in the range of 100-130K). My question to you is that if ITP is often a disease (an autoimmune) disease that shows up from an often underlying separate autoimmune disease, what are the typical autoimmune diseases that one should be looking for or tested for? I have heard that Lupus is common as an underlying cause of ITP, but I looked it up and I am 99.99$ sure I don't have that. What else?

Thanks!

Joe:

The most common autoimmune disorders we see here are Lupus, Hashimoto's or Graves (both thyroid), asthma, diabetes, MS and allergies. I'm sure there are others, jut not as common. There are a total of about 88 autoimmune disorders.

A person can develop other issues years before or years after ITP is diagnosed. I went 8 years with just ITP before developing Lupus.

Joe, when I was first diagnosed with ITP the reference was Idopathic Thrombocytopenia Purpura. The diagnosis then and even now is more a result of ruling out other causes than a definative test for ITP. In the many years since, they've changed the I to Immune since for most of us the body is attacking it's self in the distruction of platelets and/or reduced production in the bone marrow. Reading my first post several months later, I could have stated "underlying immune conditions" a bit better. It's possible that ITP may be all you ever develop.

Sandi did a good job on the other autoimmune conditions we see people mention on the board. I fall in the category of also having Hashimoto's thyroiditis which is prevalent in both my mothers and fathers sides of the family. I was actually diagnosised with both ITP (70K) and Hashimoto's on the same day.

I know that right after diagnosis all of us went through a phase where we were collecting as much information as possible, but you'll come to a point where it's not upper most in your thoughts. I went over 15-17 years in the >=50K range and never had to treat. Even now, it's more of an inconvience to schedule the CBC's and infusions than any real impact on how I live my daily life.

Thank you Sandi and Bunnie. I appreciate the responses. I have asthma, well kind of. As I kid, I had it really bad. But now I haven't had to take my inhalor in months. I think it (honestly) has a lot to do with my diet clearing up my leaky gut. Been on it for 7 months now.

That list is good. My diagnosis was the same as yours Bunnie, the Idopathic part. That seems to be all I have and obviously the definition of the word means they have no idea why. So hopefully I will keep at this upper (low) level of 100K and never have to worry about it.

My biggest thing is that I know from experience, multiple times, that many doctors don't have a clue, not one single clue. It took me over 5 years to find a doctor who would believe the rare condition in my ears was not due to me "using Q-tips". It took me five years to figure it out on my own and even have surgery for something I DID NOT have from a world reknowned ENT, who told me on my 1-month post-op that even though I had the same symptoms, that he fixed my problem and any recurrence was all in my head. I finally brought all the evidence to a couple of ENTs who actually listened, and believed me and treated me. (There are very very few doctors like this)

So it is my intention to dig, find, search, learn, understand, question and gain answers to why this happens and how it can be dealt with without the help of cookie-cutter, drug-pushing doctors and then find a doctor who isn't one of the sheeple masses who can help me.

It is my belief that there are answers, and that the reasons are just not yet clear. But again, in my experience, when one listens to their own body and asks the right questions, the answers will come. That is my experience with the rare disorder I had in my ears. Personally, I believe that problem was caused by several drugs I took a while back.... Ritalin and Paxil. Looking back, I wish I never had. Just another reason why I am so gun-ho about anything natural and so very much against the use of any drug, unless as a last resort.

But hopefully I won't have to worry about transfusions. I am worried though that it is getting worse. I noticed more petechia on my chest, bigger ones, this weekend. That can't be a good sign.

Joe, *IF* you end up having a significant enough drop that you need to treat, seriously consider homeopathy. It fits very well with your philosophy of health and it works. Which, of course, is the most important part. You might really consider doing it now even while your counts are good so that it can heal your body right at it's core where the disease comes from. It'd be better to just not have to worry about low counts. KWIM?

patti