ITP? Menstral periods? - Blood and Blood Vessel Message Board

Tia0241 · 03-27-2008, 10:35 AM

:)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.:)

japlopper · 04-02-2008, 08:19 AM

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

Tia0241 · 04-02-2008, 12:22 PM

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,

Thanks, Kristi

japlopper · 04-02-2008, 02:53 PM

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

Tia0241 · 04-02-2008, 05:55 PM

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