ITP...

Hi, My name is Aly. I am 18 and I live in Texas. I was diagnosed with ITP about four months ago in April. My count was 10,000. I got a platelet transfusion and was given prednisone. I was on it for about two weeks in April and my counts went up a bit, and tapered off it as my doctor told me to. That doctor I was going to did not monitor it correctly I suppose and two days after I stopped it my counts went back to 10,000 again. I then switched doctors and was put on prednisone again. I have a big old moonface and just want my face back, I don't even leave my house anymore because of how swollen my face looks and I am just miserable. I wish I never went on these steroids, I never even felt sick at all until I started them! I would much rather have bruises and little red dots, than feel this miserable...
On a lighter note, my counts have still been increasing even though I am tapering. My count right now is 205,000. I am going off the steroids in about two weeks and I am so scared to get low counts once i'm off them. I don't want to be on steroids forever! I know there are other treatments but they're expensive and I know that they don't work on everyone. I am just so confused and scared with this disease. Has anyone here gone through something similar? Do things get better? Can I have a normal life again?

Sorry for this long rant, I am just new to all this and don't know what to expect and am very afraid..

Hi Aly

You came to the right place! There are lots of us who have been through the awful prednisone treatments. The good thing for you is it looks like you have responded well and maybe you can get off this time. That first taper you did was really fast compared to what other drs do. You can read about all of the other treatments available under the treatment section on this website.


It is fine to rant...this is the place to do it! Don't worry, you will find a treatment that works for you and yes you can have a normal life with ITP. The moon face will get better after you go off pred.

First off sorry I have to say welcome! But Welcome. You came to right place use this site for information venting researching. The more knowledge you gain the less scarier ITP will be.


Life can happen after ITP. This can happen in 2 ways:

1. ITP resolves itself and it never appears again and you go on with your life with ITP being just a not so nice memory.


2. ITP doesn't resolve and life still goes on. You lead a so called normal life college, work, marriage, kids.


When I was diagnosed I had 2 children in grade school. My daughter is now 26 and my son is 23.

Since being diagnosed with ITP here are some things I've done:

Worked in (resturants, Long term care facilities)
learned to rock climb
canoe
did the polar bear dip twice
got college education (currently working full time as a nurse)
did a 50km bicycle race
Got a few tattoo's
Jumped out of a airplane (without a parachut) [ok so the plane was on the ground but never said I wanted to sky dive just said I would jump out of an airplane]
Every year I go camping
I volunteer from Sept to June once a week.
Was a back up organist at my church for a little while
Helped to rebuild a front porch
dry walling


I have had platelet counts as high as 151,000 to as low as zero. Done many different treatments like prednisone, IVIG, Winrho, Cyclophosimide, and Rituxan. I did have a very long remission after Rituxan. I still have my spleen and plan on keeping it.

I hope your ITP is a one time thing that never returns but if it does you need to know even if it is active there is still life to live!

Thank you all so much for your replies! I feel so much better.

Welcome Aly!

Hi Aly! My family is new to this as well (son dx in June) and I sympathize with you. He is also close to your age and there is enough going on in life for you that you shouldn't have to deal with this too. We are still in the yo yo phase and it's gets quite defeating but try to remember that there are so many people living with this illness and carrying on typical lives. I love to read their stories and advice, it is very reassuring and informative. I had cancer and received chemo and radiation when I was 21 (44 now) and it took me a few years to not feel like I was the sick one in my family. When you get down, rant and cry and baby yourself a bit and then get back up and focus on what you can do to take control of your life. With my son I keep a binder with info in it and his blood work. For myself I took up knitting and donated hats and blankets to the chemo ward. You have to find what works for you. I hope things get better for you soon. Truly, Kim

Thank you so much Kim. These past few months have been extremely difficult for me, but I am hoping things will get better.
How is your son doing? What treatment is he on?
And thank you for your reply!

Hi Dru,
I have a quick question, were you ever on Prednisone? Do you know how long it takes for the moonface to go away?

I have been on prednisone alot over the past 14 years and am on it now. The moon face should start going away after a couple weeks off prednisone. For me it does help a lot to eat healthy foods, limit salt, and do some exercise.

Hope you can get off it soon!

I found the fat face went when I got down to 5mg of prednisolone. And it then went quickly.

Oh thanks Ann!
Do you remember how long were you on it? And at what doses?
I'll be on it for 4 months i'm at 10mg right now.

Aly he has been on the gammit and we switched hemos too. The first hemo tried the prednisone along with ivig. Prednisone caused him extreme headaches where he didn't get out of bed all day and he lost 9 # in 2 weeks which is the opposite of most people. He's 6'3 and only 150# now so when his weight dropped below 140 his primary dr got concerned. He had had ivig infusions 4 of them resulting in hospitalization. His platlets never got above 30 and fell to single digits in 4 days. Then he got whinro. Whinro didn't have any side effects and platelets went up to 52 but fell to single digits within 2 weeks. So now his options are - immunosuppressants with prednisone and cellcept (he is not going to do because steroids were so hard on him), n-plate or promacta. We are weighing the positives and negatives of the platelet growth factors and the doctor says we can decide by Monday. What else have you tried? Cam is an extra in a movie today so today is a good day.

AylookitsAly wrote: Oh thanks Ann!
Do you remember how long were you on it? And at what doses?
I'll be on it for 4 months i'm at 10mg right now.

I was on it for three months starting at 60mg, tapered off, was off it for 6 weeks with normal counts and then crashed to a count of 2. Went back on it for another 3 months from 60mg while also on mycophenolate which can take 3 months to work. Stopped the pred and the mycophenolate kept my count up until I stopped taking it a year later.

I've only ever tried Prednisone. I'm almost off of it though. So we will see what happens after that. Hopefully my counts stay up. They been between the 150-200 range.
If my counts do crash again, I will refuse to do steriods again. I will never touch them again. Steriods have been just way to rough on me.
And glad to hear today was a good day Kim!

Aly,

Luckily there are other things you can try, but hopefully your counts will hold!

Hi Aly!

Sorry that we all have to meet like this! I am Jeff. I am a pretty spectacular person, charming, intelligent, personable, kind, witty, cat lover, and above all, humble! I was diagnosed with ITP last fall. I was put on prednisone. I gained 51#! I hated it! It is coming off now but I feel your pain! It will get better.

You are young and you will go forward just fine! I am, shall we say, somewhat older! LOL I will be 60 soon. I am a distance runner and triathlete and I still compete. ITP is a nuisance to me, nothing more.

Don't worry about the moon face. People that judge you on that need to just move on! You are the same person you were before any ITP or prednisone entered your world! All of here deal with it in our own way, I make light of it, always stay positive about it, and do what I want to do. I also seem to smile more. Never waste a minute being sad!

You have friends here and some folks here have been through a tremendous amount, but we are all still here, living and enjoying life! You are more than welcome to share the journey with us!

Aly, nice to meet you!

Jeffrey

Nice to meet you Jeff!
I was pretty fit before I started prednisone, I have managed to not put on to much weight, but I still gained a little, so that got me a little down although now that I am on 10mg I started running and being active again. Can't wait for these next two weeks to pass by to be off it!(Yay!)
This has all been easier for me now knowing that things will get better. I do hope and pray my counts stay up, but if they don't, it's good to hear I have other options.
And I would love to keep you guys updated on my journey, and I would also love to hear yours!
Thank you for the encouraging words Jeffrey, they are a huge help,

Aly!

How you doing?

Jeffrey

I'm doing good today. I have a blood test this Friday, so i'm hoping my counts will be up. Last week they were at 170. But for now i'm just going to relax until then.
How are you doing Jeff?!

Hi Aly!

I am fine except for my right knee. I took a cortisone shot and it is hurting again. But I am so very happy that your counts are good! Whoo Hoo for you! I hope Acount is even better! You are sounding much better with the ITP. You will be just fine! Just as I told you!

Like you I hate prednisone, it did nothing for me but add weight! That is a terrible thing to have happen when you are a "trophy husband"! LOL

Dru, are you back on prednisone???? I have a large to do list! Always here to support you Dru! LOL

Aly, let us know how the doc visit went! Keep the faith!

Jeffrey

Hi-hi Aly!

I'm Kay. I was diagnosed in December, right before Christmas. In fact, my Christmas wish was for more platelets. I didn't get them, but I sure asked Santa for em!

Since then my platelet counts have yoyo'd around. As low as 1k, as high as 197k and e'rything in between.

Prednisone was my enemy. At 100mg a day for a month and then a looong slow taper off over several more months, I gained about 50 lbs. I had the awesome moon face, too. AND because I was also in a pain medication haze and wasn't paying attention, I gained it all really fast and now my body is totally ruined by stretch marks (yeah, I look super sexxxy these days. Ugh. Total fail. I haven't been to a beach or a pool since).

So I TOTALLY get how unhappy you are with the physical changes thanks to Prednisone.
Here is how I try to keep myself from going crazy over it...

I'm alive.

That's it. That's all there is. I look like crap and I avoid mirrors at all costs, but I'm alive.

Since December, I've tried a bunch of different meds and most of them haven't worked but I'm constantly being reminded that I'm the exception and not the rule. I hear people get ITP all the time and they magically, spontaneously get better.
I will pray that you are one of those people.
But even if you're not, I know that you will make it through this.

Sometimes, I do something silly (like try to sew) and I cut myself and I panic and race around my apartment searching for bandages like a crazy person freaking out that I'll bleed to death.
But I'm still here.

I hope you're doing well. I hope your platelets are awesome and your symptoms are non-existent.

If they're not, you can come here and we'll bitch and whine and give you eHugs!
Just know that you're not alone. We've been there. Some of us are still there. You'll always have a friends here.

Kay, you're funny! I don't think anyone has ever bled to death from a cut, so next time, calmly apply pressure and get a band aid. I used to nick myself shaving all the time and I'm here to tell about it!

Remember your not alone! I wish I was alone than everyone who ever had ITP wouldn't have it anymore and I'd be the only one!



PS: sitting here in my nighty you said i'm not alone I looked around in a panic! lmao

Hi Aly!

You have just been visited by my favorite ITP friends!

Kay ( what a beautiful lady and such a great smile! )
Winnifred ( a special friend. She makes her red dots disappear with a sun burn. They do things differently in Canada!)
Sandi ( ITP Royalty! and my good friend! Quite a sweetie)

How are your counts doing? And how are you feeling? I hope you are doing great!


Jeffrey

Thank you all for your replies, it makes me feel so much better knowing there is people I can talk to.

Kay- What treatment are you on now? How long did it take for your moonface to go down? It sounds like you are handling things pretty well and I think that's awesome! And thank you for the support, I really appreciate it

Jeff- I went for a blood test today and my counts are at 233! One more week on prednisone and i'm off them completely(yay!) I can't wait. And i've been feeling a bit better, trying to be more positive about this all. How have you been feeling? How are your counts doing?

Aly,

My doc gave me a summer pass so I could compete. I am having an MRI on my right knee in the morning. I think it will need surgery. That will be a mess! LOL I will be having a CBC if it needs surgery next week. Right now I would guess them at about 30 to 40 which is normal for me. I have been down to 20. I may have been lower a time or two, but I did not get a count. I feel great all but the stupid knee. I really miss my running. I am slowly getting rid of the prednisone weight but it is not leaving fast enough to suit me. I have gotten vain! LOL

Congrats on your counts! I am so very happy for you! The prednisone did nothing for me but clothing industry is wanting me on it again! I had to buy new clothes... I hope your counts stay high and that your ITP was on temporary. If it is and you go back to normal, do stop by and let us know how you are what you are up to! Stay in touch young lady! Again I am very very happy for your great count!

Jeffrey

Hi everyone,

I'd like to report, today, I have been off steroids for one month exactly, after being on them for four months and my last CBC, which was last Friday, was 229! My doctor said to get another CBC in one month, instead of every week now. Yay! The first week I was off steroids my counts were 239! So they went down over the course of three weeks, but they're still in range, so I try to not worry about that much. I also had a couple of bruises on my shoulder a week ago and I freaked! But today, no sign of them, they're completely gone! So I guess that's a good sign.

Things have started getting better since I got off the steroids, I have no more fatigue, no more joint pain, I joined a gym with a friend and i'm loving it, I can see my muscle coming back, the only side effect I still have is the moonface which I hate. Wah. But I have seen it improve! So I just need to keep reminding myself to be patient, which can be difficult sometimes haha!

Overall I hope my counts continue to be high and will keep you updated. Hope everyone is doing well!

-Aly

Yay! That is great news Aly! Give it another month or so and your moon face will be gone!

Aly!

I am so happy for you! Great news! Enjoy the gym. I am getting back into training very soon now. My knee surgery went well. Good to hear from you again!

Jeffrey

Aly - great news! Almost back to normal!

Two things to remember:

1. Counts fluctuate all the time, so counts will go up or down with each CBC.
2. Normal people bruise too (I'm sure you've had bruises prior to ITP), so try not to get upset when you see one. Stay calm and keep an eye on it. If it doesn't go away or you get more, have a CBC. Try not to always assume the worst.

Good luck! I hope it's over for you.