Counts going way up & way down for the past year.

Hi Everyone,

I am new to the site & recently responded to another thread & it was suggested that I start another one. I have been living with ITP for 15 years. After my first diagnoses and treatments, I was stable for years, I only had one, brief relapse.
I had my son almost 5years ago & my counts were great during my pregnancy!
Now for the past 1 1/2, I have been in/out of the hospital and in/out of in office treatments. Last year I was hospitalized 4 times & then had my spleen removed on July 3rd. My counts were good for some time after that, but now over the past four months I am back in the office getting three days of IVIG, along with steriods and NPlate shots.
I am getting off the steroids as we speak, I am down to 5mg a day and I am refusing to go up, I have been on them for a year & and half (between this & now my secondary infertility), I need a break from the steriod.
Here is my my problem, last Monday my counts were up to 435! With such a high count I was not given an NPlate shot & my steriod were dropped to 5mg. A week later my count was down to 8! I understand sropping, but such a rapid & dramatic drop is frustrating & scary. This is usually what my counts do. So now I am back in the office getting three days of IVIG.
I have changed my diet, I am going for Reiki, I excercise almost everyday & I feel as if I am fighting a losing battle. I am also looking to change doctors, when my counts were down to an 8, I wanted to talk to him about what we can do, he walked out of the room & did not have time for me. If anyone out there as thoughts, ideas, suggestions, they would be so appreciated. Thank you.

Jessica

If you don't bleed too much at low counts then you could choose to not do the IVIG but simply to try and get stable on the Nplate. It's difficult to try to do two drugs at once as you don't know where you are and you end up just keep upping and lowering the dose of Nplate and it just doesn't work. If you respond to the Nplate then it's just a matter of highering the dose and in a few days the count is back up again.

Of course if you have bleeding problems then that's different. Why were you hospitalised so many times? Were you bleeding internally or does your doctor just panic. If the latter, a change of doctor might be a good idea.

Thanks for getting back to me. All my hospitalizations were due to low counts, I never have any bleeding problems. Even this past Monday, when I was at an 8, I hardly any petecia, no bruising, & no bleeding at all! So I guess you can say my stays at the hospital were my doctor going into panic mode. I feel at this point my doctor is throwing meds & not doing anything to maintain this disease. I understand we have to live with this for the rest of our lives, but there has to be ways to maintain it too.

We have a family vacation planned for this Friday & he is trying to get me to not go, I need the break away from all the craziness. Thank you again.

my doctor gives me imuran along with steroids ( like predenisinon)

it goes like this

100mg steroids ---> if my platelets are high----> 75mg steroids with 50mg imuran ----> if my platelets are high ----> 50 mg steroids with with 5omg imuran ---> if the platelets are low ---> 40mg steroids with 100mg imuran

i want to ask u if ur doctor did that , i think imuran benefits in reducing steroids & decreasing their side effects

Hi again,

I have never received imuran (or never heard of it). I am down to 5mg of the steriods & I am asking him to wean me off completely at this point. I have the weight gain, hair loss, & hair growth in strange places. I am getting to the point that if he is not willing to work with me, I need to find another doctor.
I also have infertility issues and I need IVIG during my fertility treatments, so I need a dr that is willing to help in more than one area.
Good luck to you and thank you for the feedback.

Jessica

I have never received imuran (or never heard of it).

Azathioprine is is an auto-immune suppressant marketed as: Imuran (Canada, USA, Australia, & UK), Azamun (Finland), and Imurel (Scandinavia & France).
If Imuran is working at all for you, why continue using steroids at all?
While I have not used Imuran, I have used other immune-suppressants (Cellcept & Cyclosporine) successfully for years to stay off of steroids and still keep counts in a relatively safe zone. Immune system suppressants have been far far easier in the past for me to live on. Some have generic versions which are quite inexpensive (generic Cyclosprine was only a $5 co-pay for me).
Unfortunately, immune-suppression stopped working for me last year and I moved on to Promacta.
You may want to ask if Imuran alone will do the trick for you. That would get you away from having to live on steroids.

Thank you so much for all of the feedback.
I went to the dr today & my counts were up to 153!!!
He still was trying to stop me from taking a family vacation, I refused to
cancel my trip ( I have been going up & down for a 1 1/2 yrs I cannot put my life on hold).. He wanted to up my steriods & I refused, got one more dose of IVIG & I am keeping my faith strong that I am on the road to remission!!!

I also searched this site & found some recommended vitamins to take ( C, B-12, and chlorella) I went to GNC & grabbed them too!!!

I am writing down all the advice & suggestions and I feel as if I have found my voice to take control!

Thank you again!!!!

weirdjack wrote:

If Imuran is working at all for you, why continue using steroids at all?

i believe that imuran was just helping (like Catalyst), i dont know my doctor's point of view

J - I'm glad you get to take your vacation. You're right, you do have to live your life.

So I went away & had a wonderful time with my family!!!
I did not think about my ITP for a week!! It felt so good.

Went to the doctor on Monday & I was down to 29, got a shot of NPlate &
I go back in a week. I do have some petcia, I hope the NPlate is working &
I am not getting worse (going to watch the petcia)....

Going to a specialist in NY in August, I guess it's the waiting game until then.

Has anyone tried Promacta???? Looking into drugs that have long term effects wondering in anyone out there has tried it. Thank you

Has anyone tried Promacta???? Looking into drugs that have long term effects wondering in anyone out there has tried it.

Yes, I've been on Promacta for six months now. As you can see below, I've been taking the maximum 75mg/day dosage for most of that time. It is expensive stuff. I have a good chuckle every month when I read the pharmacy receipt: "You have saved $7,946.72 on this prescription".....ya just gotta love a $60 co-pay on an $8,000.00 a month drug.
Side effects? For me they are infinitely more tolerable than steroids, and easier to live with than immune suppressants, infusions, etc. After six months; it still affects my stomach, so I take the dosage around 2:00-3:00am. I'm pretty queasy at 6:00am when I get to work, but it's tolerable. I've a few other side effects from it also: a bit of spaciness still, tiredness, some balance stuff, and sun/heat+Promacta do not mix well for me. I am good for about 2 hours max outside now. I also quit my old band, just can't play and sing all night in bars at the moment. Luckily my day gig is engineering at a work station. But the most notable side effect has been loss of appetite and a resulting weight loss.

Is it the perfect solution? I dunno. Some folks are really responsive to it.
It "works okay" for me. Seems to now be keeping me around 40k-50k. That is what it was designed to do. And since I have usually hovered around 15k-30k, anything over that is gravy. I've never known a count over 90k anyway.
Here are my Promacta history count highlights:
01-15-10 - 4k (50mg/day)
01-22-10 - 14k (50mg/day)
03-04-10 - 32k (75mg/day)
03-25-10 - 52k (75mg/day)
05-20-10 - 47k (75mg/day)
06-07-10 - 40k (75mg/day)

I am going back to my dr Monday, I am going to mention the Promacta to him.
I am down to 5 mg of steroids and I am refusing to put anymore in my body.
Thank you for the information!

After all the steriod weight gain, I could use a loss of appetite