Taking The Next Step?!?!?!

Hello,
My name is Casey and I am 25. I was diagnosed with ITP in 2005. I had been feeling really sick for several days and when I went home for Christmas Break I went to see my family doctor. She elvaluated me, drew my blood and sent me on my way. About 2 hours later I received a call from her saying that I needed to pack my bags because I was going to be admitted to the hospital because my platelet count was only 10,000. I received IVIG in the hospital and spent 2 days there. I know my count was over 100 when I left. I started WinRho after leaving the hospital and results were not good. I had to have my spleen out a few months later. After my splenectomy my platelet count was holding in the high 100s. We assumed my ITP was in remission.
This past September I noticed a really large bruise on my arm and was unsure of how I got it. I had been sick several days before that so I assumed it was my platelets. I immediatley had my blood drawn and guess what......my platelet count was 8,000. Even lower than when I was diagnosed with my ITP. I was admitted to the hosptial that night and spent 2 1/2 days there getting IVIG. My count was 250 when I left the hospital and I was put on Prednisone. I started out at 60mg daily and as we speak I am still on them. I tried 4 infusions of Rituxin this past December. Every once in a while my count would be up and we thought great the infusions worked!!! WRONG!!! My count will stay up as long as they don't lower my prednisone dose. My count may be up one week and then it is down by 30 the next week.
I am going tomorrow for a second opinion but I guess why I am writting this is because I don't know what to do next. I know I can't stay on steroids forever....nor do I want to. They make me constantly hungry, irritated, I can't sleep, and I have gained well over 30 pounds since being put on them this past September. Does anyone have any input on what may be a good next option? I am trying not to get discouraged but I hate hearing "Oh crap....well we will just have to up your steroids again!" Any suggestions are welcome.


THANKS!!

Hi sorry to hear you are unwell, i can understand your concern. For me steroids never worked so well although my doctor at the time insisted that i stay on them. So i switched to a doctor who put me on CellCept( mycophenelate mofetil). This does not work straight away and may take up to three months to work. It suppresses the immune system. I used it and it did bring up my platelets, after a few months it rose to 70k i weaned off and now i dont use them. I thin you should speak with you doctor, i think that if steroids do not work then you should not be on them.They have side effects that are worse then the problem. If however they are helping stabalize them then maybe you should be on them. I gained a lot of weight too but have since lost it. Hope this helps.Also, I would look into getting loads of tests done to make sure there is no other cause for your ITP. Also take a look at your diet and try and see if there are bad things you can eliminate These are just a few suggestions. Try also(i know its hard) to get a few minutes a day of relaxation) This wont help your platelets but just relieve some stress : ) I guess with ITP, we need to get back to destressing, eliminate certain things and think positively. Hope there are some suggestions that you can take something from.

CJ:

Hello. Welcome to the group.

There are two new treatments that may not have been around last time you went through this. They work by stimulating platelet production instead of suppressing the immune system. One is called N-Plate which is a weekly injection. The other one is called Promacta which is a daily pill. They don't generally have a lot of side effects like Prednisone does. The two worst side effects are blood clots and damage to the bone marrow (which is reversible once the drug is stopped). The goal of these two drugs is to find and treat with the lowest possible dose that will maintain platelet counts of around 50, which is a perfectly safe count. Hopefully, your second opinion will suggest options other than Prednisone, such as CellCept, Imuran, or the two TPO's above.

Sandi,
Thanks for your reply. My doctor at one point did mention N-Plate. Do you know anyone who has taken this and if it worked for them? How long do you have to take N-Plate? I know with the Rituxin I had to do 4 infusions. I did one infusion a week. They weren't that bad to be honest. I did have a mild itching reaction to the first infusion but other than that I didn't really have any side effects. What do you know about the Promacta? I am up for trying anything at this point. I don't want to take anything too risky but I am open for suggestions. Thanks again for the post!!

Ashybobashy: What kind of tests did you have done to determine that it was truly ITP? I don't think I have really had anything done except my routine CBC counts. I appreciate your post!!! Thanks!!

On a different note.....was there anyone who was diagnosed with ITP before they decided to have children? I have read up on this and it said that the chances are small that your ITP could transfer to the baby. My husband and I want to have children and I am trying to get all my facts straight before we take that next step. I wouldn't want to do anything that could harm the baby. If you have any experience in this I would love to hear from you!

When my platelets first dropped they did a screening for a lot of other diseases to make sure that it was just low platelets. They did a full blood work up including white blood cells red blood cells, antibody testing, or other auto-immune diseases. Last year same thing, they screened me(took about 20-25 vials of blood) to ensure that i still only had ITP. I never had the h pylori test which i hear some people talking about. But im sure that isnt my problem as i dont always have issues with platelets constantly. My platelets tend to drop with a bad cold/flu. It depends also whether or not you just dont produce enough platelets or say like me, my body has enough but tends to destruct them when i have a cold. Have they taken lots of blood from you at any point? cos when they do that they are testing for different things. i dont remember specifically what for but i gather they are just determining if there is an underlying issue! The thing about the CellCept i was talking about is long term its prob not good for you as it suppresses immune activity but I found there were v little side effects compared to steroids. Hope that helps

@cj, i think its meant to be safe to have children as you will be monitored. I dont think there is a huge issue of it being passed on to baby but i cannot be sure. I am sure there is research done on it but i think its a small chance. Sorry i couldnt be more helpul.

CJ:

There are a lot of prior posts about Promacta and N-Plate in the Treatments Section. It has worked well for a lot of people. There have been studies that have shown that N-Plate users have gone into remission. No one really knows why since N-Plate doesn't seem to be designed to work that way. You'd use it until it stopped working, until counts began to maintain on their own, or until something else came along that you wanted to try.

Most people do not go through a lot of other tests unless they do not respond to treatments or they have symptoms that could indicate another illness. Usually, if the rest of the CBC is good and you are not having fevers, joint swelling/pain, weight loss, etc., additional testing is not necessary.

Many women with ITP successfully have children. ITP does not affect the baby long-term. The antibodies could pass to the baby resulting in a low count at birth, but there are treatments they can use and normally the baby is fine after a few days or weeks. This is rare.

I have had ITP for over 35 yrs and have seen some great developments in care. I had a baby after being diagnosed and a spleen removal. This was in the days when student physicians and nurses would look at me as an ITP patient - I remember telling one doc I had the disorder and he said "what's that"! My son and I were both closely monitored. My son (now 31) had low platelets for 2 days then his own system took over and never had a concern since. I cannot say go ahead and have a baby but if everyone is aware of the ITP and things are monitored the decision is up to you. Christine