:)Hello all.
I just got out of the hospital. I was in for 16 days. I started my period and it would not stop so I made an appointment with my gynocologist and when I went in to see him after 2 weeks of heavy bleeding he admitted me into the hospital for loosing so much blood. I had to have 3 pints of blood. The next day they did blood work again because I was going to have a DNC and said my platelets were a 3 so they called of the surgery. I had to recieve platelets and then more blood. My gyno sent in a hemotologist to see me and he diagnosed me with ITP.
I was given a chemo treatment called Cytoxan and also some iron through an IV. I was put on 40 MG of prednisone A day. and also a harmone called Danazol 400 MG a day. I was also given immune globulin.
Finally after A month my periods have just about stopped and my platelet count was 50 when I left the hospital. I went for lab work monday and my platelet count was 95. I hope my treatment is working.
Has anyone ever had a simular situation as mine? What treatments did you recieve? How long did it take you to recover and get better? How often did you have to have a CBC? I am just so nervous and I just feel alone and confused. They were talking about removing my spleen but I hope it does not come to that. I heard to use that as A last resort.
I had signs but I didn't pay any attention to them, I had the gums bleeding and bruises I could not explain, and also red spots on my legs. Now I know what to look for. All of these signs have gone away for now.
Thank you for your help.:)

Tia,
Wow, that's a lot of treatments very quickly. If you have a drop again, I'd suggest doing just one treatment at a time. Usually the first line is IVIG and Pred. It's good that they have your period under control. My guess is that you'll be good now. I'd want a cbc at least every other week just to make sure. For me, when my ITP is active, when I drop, I drop very fast. ITP is a very manageable condition although it is very scary in the beginning. You will get it under control and learn to live normallly - trust me.;)

Get a count as soon as you see the signs - red dots, bruising, bleeding gums, headaches or joint pain. My ITP is under control - if I drop I usually do a low dose short round of Pred to get my counts back up.

Jill

Thank you Jill for replying.
I hope I have this ITP under control now.
I went yesterday and had A CBC and my platelets were 126. I was excited. Now they are going to taper my steroids down from 40 MG down to 30 MG for 10 days and then to 20 MG, and so on.
I am glad You have yours under control. I have read alot of your post and it seems like you have been dealing with this for A long time. Your post have really helped me alot. Sometimes someone who has been through
what you have been through can make you feel better than A doctor can.:)
Do you still have your spleen? I was just wandering, My doctor has mentioned having mine removed in the beginning but I have since decided to make that A last option. I hope I never have to decide on it.
Well, Thanks again for your encouragement and I hope you have A great day and high platelets,:cool: Thanks, Kristi

I do not still have my spleen. They got it in 1995, when I said UNCLE! I was tired of being on high dose Pred. Back then, they'd keep me on 100mg for weeks, which we now know for me, it doesn't take that much. Just 10mg for 2 weeks will raise my counts in a safe range. So obviously the splenectomy didn't cure me, but it gave me 8 years of no problems. If I had it to do again, I would keep my spleen. It rarely works for people for the rest of their life. I think it's more a treatment than a cure, and if it doesn't work, people are stuck on immunosuppressant drugs with no spleen, not a great combo.


Also, a little inside info on the taper of the steroids - you will, unfortunately probably feel really crummy for awhile. I always get really emotional, bad aches in the joints and trouble sleeping. It's because any inflammation you had in your body was suppressed by the Pred, and then it comes slamming back at you. Tapering is very tough, and it can make you very exhausted. If you get too stiff, let your dr know - a mild muscle relaxer may be necessary. Moving is the best thing you can do, although your body will not want you to - if you stay sedentary, you will completely lock up. I also had trouble with my memory - I did weird stuff like put the peanut butter in the fridge and left my car door open after I returned from the grocery. You're not crazy - it's all from the Pred.

Hang in there. Your counts look great!!!
Jill

Jill I have heard that people sometimes have withdrawals from pred. My doctor was going to drop me from 40MG to 20 MG but he decided to stick with 30 MG and then go down.
The pred. makes me feel crazy now anyways. Sometimes my mind just wanders and I think I am crazy but I know it is the pred.
I have been having sweats and I asked my doctor about that and he said it was the pred. also. I hate this stuff but if it makes me better I can deal with it.
What does your platelets average now? I have heard people learn to live normal lives with low platelets. Is that what you do when your platelets drop just take pred?
Thank you again for all your help!:) Kristi

Finally found someone with this also. My son started getting the petichei when he was 20 yrs old but we thought he was just bruising, until finally someone said that it looked like a blood disorder, I took him to the clinic and the Dr, did not want to even treat him they rushed him to the ER, his platelet count was 10,000, when it normal they said is 350,000+, he was given a platelet trasnfussion and kept in the hospital, he went through all kinds of test thinking it was Leukemia, even a spinal tap, nothing, thank God it was all normal, he was in and out of the hospital a few times, when they would go up and then drop, until finally he stabalized, and was fine for about 6 yrs, now he is 26 got married and went to his honeymoon and decided to go scuba diving, well, needless to say came back and had the petechei again, and sure enough ended up in he hospital again with 10,000 platelets again, he is on Prednisone now and driving his stomach crazy, has had more test done even a Bone Marrow Biopsi and nothing, it all comes back fine, I do thank God for that, but I wish I could have an asnwer why is this happening every so often, it is really scary....

By the way I forgot to ask, this last time, my son's oncologist told him to start taking Folic Acid, have you heard if this works for ITP?....

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Loly,
I take prescription folic acid, but this is for the other autoimmune disorder I have, hemolytic anemia. It they found he is low on folate, then certainly, he should correct it - low folate isn't good for anyone.

I was hopitalized a few times for low counts, but now they know it's just not necessary. And - platelet transfusions just don't work for us ITPers. What happens when we get platelets is that our immune systems just rev up and have more to eat. What they have to do to fight it is to suppress our immune system - that is why Pred works. It in effect turns off the immune system.

There are other treatments too. Intravenous gamma globulin is one to try also known as IVIG, and then another product called Winwho. They have also found some success in men by giving them Danazol, which, I believe is testosterone, but don't quote me.

how high of a dose of Pred is your son on? He should be taking something for his stomach, like Prevacid. Make sure they don't taper the dose too fast, either - that will make him very sick and cause his counts to drop very fast.

A typical pred dose is 60mg for two weeks, then taper down. Everybody responds to different doses. I only need 10mg for 2 weeks to bring my counts from 10K to 120K, so I am lucky.

There is no rhyme or reason to the disease, and that's why it's so frustrating, but most people find a way to control it and live normal lives.

Take care.
Jill

Tia,
Yes, my goodness, I sweat alot on Pred. It was awful. I also had sugar shakes, where my blood sugar would just drop - and I'd be weak and sick.

I'm glad the dr is tapering you slowly. That means you have less chance at bad side effects. Taking the dose in the morning does help with the sleeping too. And eating bananas - sometimes pred depletes your potassium. I've also heard that eating licorice helps with the taper - and I like that treatment ,so I get my Twizzlers to console myself during the bad times - that's why you also should eat bananas, cause licorice drops potassium.

Because I had my spleen removed, my normal counts are usually 500,000 or more, which actually can be a problem. With me, my counts are a see-saw - if my platelets are high, my red cells are down, because I also have hemolytic anemia, which is a whole other headache, much worse for me than my plateles. But I still have platelet crashes from time to time. I usually don't treat it until my counts are below 50K for awhile. I get massive bruising, so I do a low dose of PRed. I'm lucky Pred works for me at a low dose.

I know lots of ITPers who live with 20K platelets and don't treat, either because it doesn't raise their counts or because they don't have symptoms at low numbers. Someone with lower counts might have bigger platelets and be able to be just fine. I think you have to listen to your body.;)

Jill

Well, I started tampering my prednisone. I was on 40 MG and now I am down to 30 MG. In 7 to 10 days I will go down to 20 if I feel o.k.
I will take your advise and eat bananas. So far so good though. The doctor said I will eventually start feeling more like my self. I can't wait. I hate the way the prednisone makes me feel. I don't guess anyone likes it though.
I just hope my platelets stay high and do not lower when I keep lowering my pred.
Hope everyone is feeling well, Kristi