"New" to ITP after 21 years in remission

Hello Everyone,

I had acute ITP in 1989 at the age of 11. After about a year of steroids I was "cured" and free of symptoms.

Some weeks ago I noticed petechiae on my body, long story short, I was in hospital with a plt count of 3K.

I received IV steroids, but didn't help. After that I received IVIg for 5 days, and luckily my counts went up to 98k. I was let home for the weekend and next week's result was 257k! I was taking 100 mg steroids (Medrol)daily in parallel. My latest result (4 days later) was 246k and my Hema decreased the steroids to 64mg. Which is so far good.

Unfortunately I am still in a phase where there are no answers to how serious the ITP will be. The IVIg I received is said to have effect for about 3 weeks and then your counts can/will drop back. What scares me is that I don't know yet whether the steroid pills I am taking are working or not, but I am very positive about maintaining a satisfactory plt level in order to be there for my family (my wife, my cute little daughter and the second baby we are expecting). While being positive I must admit that I am scared. Only time will tell how serious this is going to be. I am told this is a condition you are able to live with while making some serious lifestyle changes which by the way should help to heal your body (apart from ITP.)

If anyone is in a similar situation all I can say is always stay positive and be happy about every day you can spend on this planet with your loved ones. (and quit smoking - if you're a dumbass smoker like me

I wish good health to you all from my heart!

Itadakiman

Hi - we have all been in your position and can relate. I'm not sure what you mean by "how serious this will be". A count of 3 is a serious situation, but you were able to get the counts up with treatment which takes serious out of the equation for now because you have safe counts. Yes, your counts may drop again and that is typical of ITP. Some people go through many treatments until they find one that can cause remission. You could get lucky and have a long remission this time due to the steroids, but only time will tell. Counts go up and down and it can be a roller coaster, but as long as you can maintain safe counts over 20 or 30, life can go on normally.

Yes, you can live with ITP...we all do. I've had it since 1998 and have had many ups and downs in that time. I'm now on a pretty long remission (6 years), but it took me a long time to get there. In all that time, I worked full time and raised three kids without a hiccup (well, a little bit of steroid crazies mixed in there, but I was the one who took the brunt of that).

You'll be okay, no matter what happens. Just take one day at a time and focus on those babies. For most, ITP is a pain in the butt disorder mostly due to treatments, but very, very few ever die, especially if they respond to treatments.

It sounds like you have a positive attitude towards this which is good. It is okay to be scared, but like Sandi has said you can live with ITP. I have lived with Low Platelets since I was born and I am now 25. The Doctors at the moment don't think i have ITP, but i do have a low platelet condition.

It does take time to find the right treatment and sometimes even that will fail after a while. You just need to be patient and just be careful when you know or think your platelets are low, but you don't have to wrap youself in cotton wool and not do anything.

First of all, thank you both for taking the time to respond to my post. On today's check-up I had a count of 160K, which is better than anyone with ITP could wish for, however it's hard not to notice the decreasing trend. I was really positive that today my counts would rise, but didn't happen. Although it's too early to say anything at this time, there is a possibility that my current platelet counts have to do with the IVIg boost I got and the steroids are not gonna work. That would suck, but I am still very certain that there is be a way to keep this under control.

Are there any "safe" (sorry for the stupid word) treatments if the steroids don't work?

Thanks!

P.S.: I am quitting smoking today for good and I am going to have a platelet count of 252K next week. "I've never been more certain in anything else in my life "

Your welcome, glad to hear u r quitting smoking, you will feel a lot better for it.

Most treatments come with some side effects, you just probally need to weigh up which works best and has the lest amount of horrible side effects and that can take some time. Unfortunately ITP doesn't have quick fixes or easy answers and treatmens. All have pros and cons and it's up to u and your doctor to discuss what might work best for u that gives u as less side effects as possible. Prednisone is in my opinion only a short term treatment, I wouldn't use it for a very prolonged amount of time.

There are some treatments that have been side effect free for some people, but others have had horrible side effects from the same treatment. The two I would suggest looking into are Win-Rho and Rituxan (if the need should arise).

I've had remissions from Prednisone, so it's not always short-term, but a lot depends on how long you are on it and how responsive you are.

Thank you both for answering, I really appreciate it!

...looking at my daughter's picture makes me believe that I will manage to keep this thing in some sort of a balance in my life

And please keep your fingers crossed for my hypothetical 252K dream result for next week's check-up.

I hope it does happen for u, I'll keep my fingers crossed, but don't be too disapointed if it doesn't happen

This is my first post on this site after being a silent observer for 2 months. I felt compelled to reply because I can't beleive we are almost in the exact same boat. In 1990, I was 10, and diagnosed with ITP, after a year of prednisone, IVIG and Danazol, I went into remission for over 20 years. Lived a perfectly normal life without ever thinking twice about ITP. I have a wife and beautiful 3 year-old daughter. Just last month, I got a big bruise and petechia - my heart dropped and knew immediately what it was. Went to the Dr. and sure enough had a count of 21. Been on prednisone taper to 40mg but counts never went above 90. Hemo says I have to get off pred ASAP and wants to talk about next options which all scare the hell out of me. When you are a kid, you are sheltered from the heavy thoughts. When you have a family and kids, perspective changes and all I want is some peace of mind that I can live a semi normal quality of life and be there for my family. They are the only thing keeping me focused at this point. Inforamation and support wasn't around for us 20 years ago, and now I find it is a blessing and a curse. Congrats on your new addition! My wife and I have been trying, but now may be too little too late. My Hemo says treatments will likey prevent fertility which is also weighing heavy on my heart. I both sympathise and empathise with you. Good Luck, and hopefully we can chat sometime. Sounds like we have way too much in common. Take Care

Andre
atvalen56@aol.com

Andre:

You can live normally with this. When I was diagnosed, I had three young children, a full time job and a husband that travelled all the time. I was pretty much on my own, and did just fine managing kids and house and work. It wasn't easy and the treatments were hard to handle, but it was do-able and I never feared dying or not being able to keep going.

I don't know what treatments your doctor is talking about that would affect fertility. As far as I know, those are only the harsh chemos which are rarely used for ITP.

147k instead of 252k

I could say the meds are not working and my counts will drop to levels I don't wanna think of, but i decided that I'm perfectly healthy and it's gonna stay that way and my counts are gonna be above 100k in each and every damn CBC I have to take for the rest of my life.

Andre, it's nice to meet you, I'm sorry to hear that ITP came back to your life as well. I am with you and hope that you will find a right and safe treatment soon. Keep us posted and be positive!

*&%!CBC but they do just become "normal" after a while. Stress inducing yes but eventually just another part life - at least that was my experience. On the silver lining side the CBC can be an excellent confirmation that all is well.

I, too have had a relapse after being in remission for 4 years. I am a little scared since they cannot seem to stabilize my counts above 3-4000. The Decadron 40 mg isn't working (after 4 days of treatment). I had one treatment of IVIg along with the Decadron yesterday which didn't seem to work. I am hoping they can give my the IVIg without the Decadron today. Has anyone heard if they can do this IVIg without Decadron? Would really appreciate a presponse. Thanks!

Dee Dee Marie (Diane)

Yes, they can do IVIG without Decadron. Decadron may minimize side effects though.

Last week's 147k is followed by today's 141k

Still don't know whether to laugh or cry, but I'm pretty happy now because my steroid dosage has been lowered to 48mg.

I'm still in the unclear whether the steroids are working and/or my counts are going to drop, but I'm still positive (and eating super healthy).

I received the 5-day IVIg dose about 27 days ago and I'm still above 100k, so I guess that's good.

I actually sketched up a timeline of how my counts will remain at a satisfactory level week-by-week and how in the end I will be able to get off the steroids on the 16th of September. :woohoo:

Love you all and wish you maximum health and worry-free everydays!

Andre and Itadakiman,

Hang in there! I suffer from a similar case of ITP : diagnosed as a child, went on remission for 20 something years and the ITP came back.

The bad news is once the ITP came back after the 20 plus year break, I have had 3 episodes of low platelet counts.

But there is always good news :laugh: The episodes of low platelets have been short and seems to go into remission after a few months on prednisone.

I am hoping you will both have the same short episodes or even better, that ITP might go away for a long time again.

Pawee

What you're saying Pawee is music to my ears. Of course only life will bring the answers, but actually today at my weekly check-up I received really good news: First, my platelets were at 183k, which means an increase finally! Second, the doctor said that it is time to openly say that the steroids are working. Third, although he's still keeping me on 48mg, next week I can go down to 32mg. And fourth, he's going on holiday so my next check-up is only in 1 month. It's a bit scary since we were doing weekly check-ups, but it also gives confidence.

These are really great news for me so we (my family)decided to go on vacation and I'm already writing these lines from our weekend house.

Hang in there everyone and always stay positive, it's always possible to turn your attitude towards this condition into something uplifting. Just read Pawee's post over and over again

P.S.: Andre let us know how you're doing if you're around

I too have lived with ITP for 21 years, although mine came on after the birth of our daughter. I accept that I will never be "cured." I will always see my primary doctor at least 4x a year (even when I am not sick). Blood work goes along with these appointments. Being referred to a specialist is standard protocol when things are not right. I pay attention to my body and the signs I have learned to recognize that mean I am having a relapse.

Steroids have there place in treating ITP. I have had 3 different doctors and each had a different approach to treatment. The first treated with high doses and every time my numbers dropped, he was quick to jump my dosage back up. It took 4.5 years before I was stable and able to stop the steroids. The second started the steroids high and also gave me a double infusion of IVIg. She lowered my steroids quickly, but was did not jump them back up if I had a drop during the week. Checked my numbers the next week and they had popped back up. Only 1 year of treatment and I was free for another 10 years. My last doctor chose not to treat me because my numbers were high enough and turned me back over to my primary doctor. If my counts go below 84k, then I will go to see him and we will look at the new options available.

I have ITP, it doesn't have me. I hope you will find the peace and control that are necessary for living with it.

It seems that relapsing from childhood ITP is becoming "the thing to do". I was diagnosed at six years old with a count of 1,800. I lived a fairly normal childhood, minus playing contact sports. After a dose of steroids, my counts remained managable and at the high range of low. By the time I went to college I was discharged from doctor's care. As far as they were concerned, my condition had resolved. Then, in 2007 they hit 2,000 again. You all know the story: unexplained bruising, etechiaal rashes... I had a very difficult time accepting what had happened, as many of you will remember. I completely obsessed over my CBC results.

Now, two years later, my counts still aren't great. They'll yo-yo from the 20s up to the high 50s. Yesterday's CBC came back at a whopping 18k. However, my body has adjusted to reduced platelets. I am not showing any symptoms of low counts, so the 18,000 platelets that I have are really working hard!

I still do all the "normal" things a mom does with her family - camping, swimming, jumping through water sprinklers, etc. My counts may not be normal, but my life sure is! I've just had to put my rugby career on hold.

Blessings,
Hauna

Hello Everyone,

Today I was able to leave medication. My platelet number has been more than satisfactory each and every time. I'd like to believe this is due to the positive thinking I had from the start and due to the care of my loved ones. From day 1 I saw myself as a healthy person and I will continue to think of myself as a perfectly healthy man, free of any illness or disease. I wish everyone a very Happy New Year and let me share with you the following truths I have been saying and thinking over and over when feeling down:

"Make your happiness the number one thing in your life"

"Know and accept that you are perfect as you are right now"

"When you love completely and feel the joy within you disease CANNOT EXIST"

Love to you all!

Csaba

Hi,

I'm closing in on my 3rd month in remission. From time to time I have 1 spot (petechia) appearing on my tongue. I ususally spot it in the morning and it's gone by the evening. I spotted one just today, hopefully it will go away by tomorrow. I was just wondering what could this mean? My platelet no. is decreasing again or going up and down within a day or maybe it has nothing to do with my current platelet no. just something that happens in people with ITP?

Thanks in advance!

I'd tend to think that it's a swollen taste bud or something. I don't think it's petechiae if your counts are normal.

Hi Sandi, thank you very much for the answer, I'll have my counts tested next week, but I did bite my tongue and that's where the spot appeared.

Probably just a normal reaction then. Good luck with the counts!

Hello Everyone,

I hope everyone's doing great! I had my counts checked yesterday, happy to say that I'm still in remission. Odd thing though that each time my "eosinophil" value was too high (9%; normal range - 0-5%). My doc never mentioned this, but does anyone know if this is related to ITP or might be some different reason?

Thy

www.nlm.nih.gov/medlineplus/ency/article/003649.htm

Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions.

Certain medicines may cause you to have an increase in eosinophils. Such medicines include:
Amphetamines (appetite suppressants)
Certain laxatives containing psyllium
Certain antibiotics
Interferon
Tranquilizers

They are part of your immune system. If they're high, chances are they're fighting off something. However, if they were too high your doc would have run more tests. I wouldn't worry about it, but ask your doc if you're concerned.

Congrats on your continued remission!!

Meghan

Thank you Meghan for the quick reply! My doc said I shouldn't worry about it, he's not concerned with it until they're above "11%".

Have you had your spleen removed because if so that will increase the white blood cell count

Mine is always around 10 when not fighting an infection and comes up as red colour on the GP computers screen whenever I get the chance to glimpse my page on their screen. I discovered this last year when investigating migranes and one doc was almost excited thinking I may have had an infection and hence blurred vision until I stated that I don't have a spleen. He accepted it without question.

It does cause GP problems though because whenever I have a routine blood test with them am always called up to go back because the nurses never read my notes. It would save them a few phone calls and I did loose my cool last year when I was rung up by one to make an appointment. I made the appointment and then was told too soon once I had turned up.... I refused to go back as was having a routine blood test anyway via hospital. So why the GP's need routine bloods when they see the hospital counts (as I gave permission for that to happen). If only they read rather than continually jabbing us.....

But yes, if you have had your spleen removed the white blood cell count will always be up I learned. And is up when you are fighting any kind of infection even allergy/hay fever I believe.

Ps Sandi
Rituximab does't affect fertility life long as such but in your question that you didn't know which drugs the doctor would be talking about. I definately got told not to get pregnant within a year of taking rituximab. For me personally am quite happy about that but it is different for all of us. I got told as I signed the agreement. Along with infection information though I did notice that I wasn't told what the infection actually was. Yes I was given the name but it meant nothing to me until reading on here.

Yes, I'm aware that one shouldn't get pregnant within a year of Rituxan treatments.