Levels still low

I found out last Sept that I had ITP , my platelet count was at Zero.. I took Prednisones for 5 days and it didn't help.. My DR said that spleen had to be taken out . 2 weeks later they did just that.. It did not help me..and all the treatments I got at the Cancer CEnter and the meds I'm taking now still doesn't help me. My levels are at 20,000 now and the DR still doesn't know what's causing my condition .. I'm back on 120mg of Prednisone and 20mg of Promacta a day .
Still Ned answers and new hope

I'm wondering why you're only on 20mg of Promacta. I thought usually one starts off at 50mg and increases to 75mg...

120mg of Prednisone sounds horrible! I hope you're managing it ok...

I'm not sure why that is... My Dr don't seem to be worried bout it .. Thanks for your comment

What I don't understand at all is the rush to splenectomy! Everything I have read and watched says, "Wait!" I did not respond to anything at all for two weeks. Then my platelets zoomed up to 342,000 over the course of a week. So I don't think your lack of response in such a short time was reason to yank out your spleen.

I agree.. When first found out I had a zero platelet level.. I was sent home that day and had appointment next morning at a CAncer CEnter in which my level rose up to 1000 , that was on a Friday.. Sent home again by that DR and took Prednisone frm SAturday til Tues. CLinic visit on TUes cause MOnday was a holiday . My levels didn't change and was put in the hospital then. After 4 days of Rutuximbah and IVIG I was released then the following MOnday was put back in the hospital cause the treaent didn't help. I was told then I had to have my spleen removed for the following MOnday again. My levels went up to 96,000 after the surgery but by the time I left the hospital the next Saturday my platelets was at 34,000 in which they went back down to 8,000.. THe next four months I took the 4hour treatment of Rutixmab twice a week.. Which brought my levels up and down. I need to find another CLinic and another DR

I agree. I think you need to find a doctor who is an itp specialist. I was being rushed into splenectomy after failing prednisone and Rituxin, I ended up going 4 hours away to a specialist at Cleveland clinic. He truly understands the disease and is up to date on all the latest research. He has me on Nplate and cyclosporine currently and am doing well unfortunately I can't see him weekly but I can call anytime and he dictates my treatments to my regular doctor.

Wait - you had four months of Rituxan twice a week?

I just don't know what to say to this....except; find another doctor.
I am very sorry that you got bullied into a splenectomy right off the bat.
The proportion of all the treatments seems really off. Four months of Rituxan twice a week? Are you perhaps taking 25mg Promacta? Never heard of a 20mg dose. The common tablets are 25mg and 50mg. I have heard of 12.5mg, 75mg, and 100mg tablets, but have never seen them. Most of us started on either 50mg or 75mg and adjusted from there. Not sure why he has you on so much Prednisone along with everything else.
Do some reading, poke around here and see what others are doing, and look for a doctor who will work with you...and one knows what he is doing with ITP.

Wow, what a nightmare! I am so sorry you've had to go through so much in such a short time. The thought of 120 mg of prednisone makes me want to cry; I hope you are dealing well with that high of a dosage.

I have found (through various other health issues) that when dealing with doctors we have to be our own advocates. And in order to help facilitate that, it is our responsibility to educate ourselves on our own disease. I read as much as I can because I want to take an active role in my treatment and if my hematologist recommends a treatment I ask him why, how, when; ALL of it. He probably thinks I am insane but he works for ME, not the other way around. And so far, we have a wonderful patient/doctor relationship. So if you think you might benefit from getting a new doctor, then by all means, ask for a second opinion! Yes, it can be overwhelming, disappointing, even maddening, but it also can be hopeful. Allow yourself the days of feeling "Blah" because they are followed by better days, days with a bit more sunshine in them!

As you have seen, PDSA is a wonderful site to gain knowledge and support. I really do hope you find the answer that works for you.

Wow! Sorry for the prednisone and the spleenectomy... Get another doctor. Post on line here and maybe someone close to you can help.

Hang in there! Keep us posted!

Jeffrey

With my ten years with ITP I have learned theres no reason for any of it lol. Why was I a healthy kid and boom senior year of high school ITP? Itp makes no sense at all to me it has a mind of its own its kinda like an annoying relative who comes around when they want and you have to be nice to them lol. You just have to learn to accept it, I stopped trying to figure it out about 5 years ago and always remember it could be worse

Good Luck,
Keli

Kelirae,

I am sorry that you have had itp for so long but glad to know there are other people in their late 20's battling this. I am always by far the youngest at the doctor and its a bit awkward because they always talk behind your back and ask why you are there ( most patients there are cancer patients)

I think you said it best Amy! I try to follow all of the latest research, found an itp specialist who is amazing and am going to the pdsa conference in July to learn even more.

It used to annoy me too when I was younger too now I'm friends with all of the older people in there they mean well but I know what you mean lol and yes I think right now my biggest fear is pregnancy, I want a baby so bad but I have severe itp and am so scared to risk it. If I would have known I was going to be diagnosed at 17, I would have been a teen mom lol I'm jk but I am really scared I am never going to have a child

I fear that too....I'm actually going to ask my hematologist what the safest bet for me would be for me. I'm guessing he will say splenectomy. I think if all else fails I would be open to adoption.

Thanks all for your comments. The Dr I see is at a Cancer Center in Athens, Ga. I have told him several times I wanted to go to a big University Hospital or similar and find another Dr to help. But he seems not to hear me. He says as long as my levels gets to 50,000 then he's ok ..But my count hasn't even gotten to 30 yet. I have a friend that goes to the same clinic but a different Dr and her level is around 200,000. I know there's a conference coming up in Maryland in July, which I want to attend. But not sure if Im gonna be able to. Im willing to go to another state to find some kind of reckoning. Pls leave some ideal place info.. Thanks all

You know, you don't need to be at 50,000. My dr is happy if I'm at 30,000. We start to treat if it's under 20k. My dr gets nervous when I'm close to 30k since my platelet crash very fast.

My dr says that I know more about itp than most drs do. He says I can pretty much treat myself if I wanted to...

weirdjack wrote: I just don't know what to say to this....except; find another doctor.
I am very sorry that you got bullied into a splenectomy right off the bat.
The proportion of all the treatments seems really off. Four months of Rituxan twice a week? Are you perhaps taking 25mg Promacta? Never heard of a 20mg dose. The common tablets are 25mg and 50mg. I have heard of 12.5mg, 75mg, and 100mg tablets, but have never seen them. Most of us started on either 50mg or 75mg and adjusted from there. Not sure why he has you on so much Prednisone along with everything else.
Do some reading, poke around here and see what others are doing, and look for a doctor who will work with you...and one knows what he is doing with ITP.

I started off with 50mg of Promacta for 10 days, count went from 40k to 268k. So, my dr dropped me to 12.5mg...and then we will adjust the dosage if needed. I just want a safe count and lessen the side effects of Promacta.