Dx'd 2-11-13

Long time forum creeper, finally decided to join.

First of all, I cannot express how wonderful it is to have a place like this where people can be both educated and encouraged on the ITP journey. It truly is a blessing to have read some of your stories and struggles. Thank you.

I was diagnosed with ITP (platelet count of 5) on 2-11-13 along with Hashimoto's Thyroiditis, so this is all still fairly "new" to me. I have so far failed IVIg, prednisone and Rituxan and have a horrible time trying to keep my platelets above 20. I was at 13 on Wednesday and yesterday I was at 8 so my hematologist suggested a "rescue" dose of prednisone (20 mg) until we can see if I get insurance approval for NPlate; which would begin early next week. I am hopeful it will work to normalize my counts as I am only 39 and would rather like to keep my spleen for as long as I can.

If anyone is willing to answer, I have a few questions.
1. What treatments finally "worked" for you?
2. How do you combat the overwhelming urge to become violently frustrated/discouraged?
3. In case the NPlate doesn't work, my choices are more immunosuppresives (different chemos)
or splenectomy. Who has had experience with either and how what sort of results
did you get?
4. It will get better at some point, right?

Thanks so much.
-AmyB

Amy,
Have you looked into getting your thyroid stabilized? For some that impacts platelets in a positive way.
Erica

Amy:

Most people go through several treatments until they find one that works for them and doesn't cause too many side effects. That can take some time. It's just a normal part of this process and while it can be frustrating, patience is key.

In the meantime, the only way to avoid being frustrated is to try and go with the flow. Try not to focus too much on the actual count, just try to pay attention to symptoms and how you feel. If things are good there, you're doing okay. If counts are over 20k, that is considered safe and although your counts might not be 'normal, they are acceptable.

Most of the time, N=Plate or Promacta do work. They have a good track record. If not, there are other treatments. Which chemos are you talking about? I don't think I'd consider Vincristine or Cytoxin if those were the ones mentioned to you. I rarely see people have to resort to those.

Yes, it does get better one way or another. Most people get to a point where they can manage ITP without too much havoc. It's always more difficult at first, but you get used to it and most people do live totally normal lives.

Erica, I am currently on 75mcg of levothyroxine. I have an appointment with an encocrinologist but the earliest they could get me in in June 24th so I guess until then, we'll just deal with the ITP and its issues. Hopefully, once the thyroid is stabalized the platelets will behave better!

Sandi, Thank you for your reply. I know you have been dealing with this for far longer than I so it is encouraging to see the grace with which you have dealt with it. Cytoxan was mentioned but not encouraged. I am trying to remain positive as we begin the NPlate and if it works then I won't have to think of those other options!

Hi Amy,

It is okay sometimes to feel discouraged and frustrated, just let yourself feel that way for a little bit and move on, oh and avoid the "violent" frustration cause you don't want to cause any bruising

Be patient and you will find a treatment that works for you and then ITP just fades into the background of your life. It really does get better.

I have used prednisone, IVIG, and rituxan. It all works for me for a while. I had a splenectomy for a different blood disorder.

The 2 things that have helped me the most are
Having a hematologist who I trust and is willing for me to take an active part in my treatment
Talking to people here on this website

Dru

Thanks, dru. I know it will get better as time passes but it seems overwhelming at times.
One day at a time, right?

That is exactly right, one day at a time...but don't forget to find some fun, relaxing distracting things to do in those days!

Welcome Amy! I was diagnosed with itp in December 2012. I was diagnosed with Grave's disease in 2007 and went into remission in 2009. There are others on here who have had thyroid and platelet disorders as well.

I have failed prednisone, cyclosporine and Rituxin. I am currently on Nplate and have responded so now it's a matter of getting the doseage correct. You may want to look into drug assistance for Nplate because they have a great program no matter what the income level. There have been others who have responded to Promacta on here as well.

I feel the same way about keeping my spleen. I am 28 and really do not want the long term effects of it at this point if another treatment will work. However, my first hematologist was trying to schedule me in with a surgeon in March, which really freaked me out. The 2nd hematologist is willing to work with me on trying other things and really has made life with ITP a much better experience.

Amy,

Welcome to the group! Sorry you are here! I was diagnosed in November of 2012. I have had IVIG and Prednisone. The IVIG worked for a bit and the Prednisone not so much, although the prednisone "Gave" me 51# that I will whine about for the next 40 years! My counts seem to run between about 20 and 45. I am doing nothing right now. I feel fine and I am happy. It could be a lot worse. It did take me several weeks to get used the idea that I had something wrong, that I could not fix it instantly, and that Kate Upton was probably not going to call me! I can deal with the first 2. This web site will help you more that you can imagine. Great people here and a wealth of information that any doctor would love to have.

You will be fine! Educate yourself, question your doctor, and remember that you have a support group. Go forward and live life! Smile!

Jeffrey

Vdeutsch85: So happy to "know" people who have had success with NPlate! Thank you so very much for sharing your experience with it. My hematologist is completely against splenectomy at this time. He says it has not been nearly long enough to resort to that. I am happy you have gotten to keep yours as well!

Jeffrey, I too had a prednisone "gift" of 26 extra pounds that thus far, have NOT decided to leave. But it has only been a couple of weeks and I have read and heard from other prednisone takers that the weight does eventually come off. I hope so because it is hard to not only not "feel" like yourself but to look in the mirror and wonder "When did I become a Cabbage Patch Kid? I half expect to look at my hind end and see Xavier Roberts' signature there. :lol:

Once I have more energy, I do look forward to getting back into my "normal" lifestyle and activities. But I do tend to feel pretty darn drained when I get below 15! So, here's that within a week or so (fingers, toes and eyes crossed) I will be back in action!

Again, thank you to all who have replied; it really does help so much.

Amy!

You sound so much happier today! Great! You will be fine! What you have on tap for the rest of the summer? BTW, I have about 22 pounds of the prednisone weight off now, but it leaves "hard". I have trained hard enough to drop it all but some is still hanging on. I will defeat it!

Jeffrey

It wasn't that I was unhappy; disappointed to be back on the prednisone I would say is more accurate. Had a long weekend with rapid pulse and then a bout of elevated b/p.

I go in this morning for a CBC to see where I am at and then I suppose we shall see what the week holds. Really hoping to be above 8, even with only four days of pred!

As for my summer plans, Jeffrey, I have three kids, three cats a dog and a husband, so I fully expect to be busy with their shenanigans! My son is leaving for college at the end of the summer on partial football scholarship so THAT is very exciting to us! My daughters (age 13 and 10) have basketball camp this month and the plan is that my husband and I are going to go to Starved Rock National park in north central IL to do some hiking/trail walking with another couple I went to college with! Beautiful area of the state and I am totally stoked to go! My parents own a small farm outside of the town where we live and I do spend a lot of time there tending to feral barn cats/kittens, helping with the lambs/piglets and so on.

Anyway, I am rambling.
Apologies.

Amy

Amy,

Good Morning! It does sound like a full plate for you! I am next door to you in northern Indiana. Our daughters are grown and gone now but we also, have 3 cats! Both of my daughters went to Indiana State in Terre Haute so consequently we spent some time in Illinois.

Let us know how the CBC went and you were not rambling.

Jeffrey

Up to 23 today!

Waiting for NPlate approval.
Will more than likely start injections sometime this week.

That's great! I hope it works for you!

Okay, nice.. Glad your counts went up and nplate on the way!

I have 3 cats, 1 dog, husband and three kids too, but mine are older though 2 still live at home.


Glad you have a great trip to look forward to this summer!