Looking for at home treatment options?

Hemo called this morning and told me he was having a good day until he read my cbc report from yesterday, so I guess I ruined his day. Platelet count was at 4k as of yesterday morning and he wanted me to come in for a transfusion. I told him no and so he resigned to putting me back on prednisone at 80 mg once a day. I was off it for three weeks. I see him tomorrow and I do not know what to expect except that he will tell me I need to do rituxan or splenectomy. Neither of which I want to do nor can I do with the timing of life right now.
He says I am at risk for spontaneous bleeding. I have had no symptoms except light bruising which I know exactly where each one came from as Im pretty rough on me.
Is he overreacting?
Are there any other pill form treatments?
Is there a home cbc reader like the glucose meters for diabetics?
Sorry for the repetition and thanks for the help.

There are other treatments and nobody should be on steroids for too long so it's a good idea to try something else. There's the immunosuppressants like CellCept (mycophenolate) and Imuran (azathioprine), or the TPO drug Promacta (eltrombopag) for starters. And if you know you get a response from steroids and that's all that's offered then why not negotiate a lower dose. When I was waiting to start Nplate I took bursts of steroids but never more than 15mg. There's always dexamethasone, another steroid that you take for just 4 days. You might get a good response from that.

See the list of drugs in the guidelines...
bloodjournal.hematologylibrary.org/content/115/2/168.full

Thanks Ann.
I just watched the video with Dr. Drew Provan and he really helped me understand a lot more about ITP and what is offered and what shouldnt be.
I am going to speak to the hemo about Promacta and only taking bursts of steroids at a time if he is not willing to discuss Promacta.
I have had no luck with dexamethasone. Even after IVIG prednisone still has given the best response.
I have to say I was going so good, feeling great and back to pre ITP until the hemo called and gave the low count news. It is hard to fight that desperate, deflated and depressed feeling that follows news like that sometimes. Then I get over it and find something else to work on.
Ok, off my soap-box.
Thanks again Ann and to all that have kept up with me.

I think it's sad that your doctor didn't think to break the news in a more positive way. He should set the tone and be a little more upbeat and optimistic. Presentation can mean a lot to a patient. I'm glad you were able to pick yourself up.

Thanks Sandi. Personally I think these (the two I've seen) doctors are sad.
They are of old school thinking and not listening to the patient (I thought he would at first but not anymore). He must be very use to not having patients question his opinion or methods. He said, "Since you want to play a role in how your case is handled he would allow...,"
I dont know anyone who wouldnt want to be involved in their own lives but he must.
At least I only have to see him once a month lol.
Saw him today and nothing new. He told me that at 4k spontaneous bleeding of the brain is very serious concern. I think that is more rare than possible but I could be wrong. Back to weekly pokes and prednisone. Big yay.
He says I cant stay on steroids the rest of my life but he also said that if they are working then there is no need to move on to something else. He still thinks rituxan and splenectomy are my most likely other options.
Is rituxan any more cost effective than promacta? He said for that one I would have to be evaluated for insurance purposes and they usually do not recommend that or N plate unless steroids and one other treatment has failed. He also said promacta is very expensive and that there is limited data on it since its only been in use for about 1 1/2 yrs.
I really think he should watch that video with Dr. Drew Provan.
Oh well, there is always something to do. Like remodeling the bathrooms next.

Yes, there are actually people who do not get involved with their own treatment. My husband is one of them. He has a few minor medical problems and he never questions, never suggests, never researches. When I do that for him he gets upset and says "the doctor said..." yeah okay.

Good for you for sharing the control. It really helps.

Rituxan can be more cost effective if it works. If it doesn't, then it was a waste of money. Of course you can't know that ahead of time and I think it's worth a shot for some people.

SOme doctors do not stay current with ITP. My hemo is one of them and he admitted that he learned a lot from me because I was pushy. He was great because he would at least listen (it took some time to get to that point with him). He said that he has so many illnesses to treat that he can't know everything about all of them. He has his specialties. I understand that.

I hadn't seen Drew Provan's video before and just watched it through. I'd said elsewhere on this forum that he was anti-splenectomy and he certainly made that clear there. He said that he just doesn't do splenectomy at all any more. Interesting that the patient he talked about.. the psychiatrist who didn't respond to anything, was a guy I did the Nplate study with and he didn't respond to the drug at all so dropped out after the first ten weeks when he'd got to the maximum dose. It was good to hear that they finally found something to help him. Last time I saw him, blood was just dripping from his gums, he was in a bad way.

Since that video was made too, NICE did agree to the use of Nplate in England and also didn't impose the after splenectomy clause so we don't have to have a splenectomy first in order to get it.

Interesting video.

Where is it? I'd like to watch it. No more splenectomies - my kind of guy!

It's linked from the front page of the PDSA site. Try this direct link.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I found the playing of it a bit weird as it wanted to repeat one bit over and over and I had to give it a nudge. It also seemed to jump and miss a bit out at the start but it was worth persisting with it. It's long, over an hour.

Thanks Ann.

jdarlin- if you've never tried Rituxin, it might be worth a try. I got the drug free from their program. But I had to pay for the 4 infusions, insurance helped some. The infusions were easier than I expected with no side effects.

I was in the group of people who was considered "failed response" by my hemo, but even a Rituxin failure kept me over 25K for 6 mos. And that was great, I got my life back. And was able to taper nearly off prednisone, I took a tiny bit 2.5mg.

Recently I had a virus and my counts fell to 1K. I increased my prednisone to 15-18mg. Now have tapered back to 7.5mg. I would never go back up to 80mg- you have every right to manage your own treatment. My first 6mos with ITP were miserable until I started taking charge.

I swore I would never take over 10mg pred again, but with my numbers at 1K, you gotta do what you gotta do. I didn't believe in brain bleeds until reading how some folks on the forum have had brain bleeds and their stories, not fun. So I do my best to keep my plates over 20K, if thats not possible then I'm fine with over 10K. good luck!

Please read my story, My Treatment Worked, nothing helped my count for years until i started my own home treatment:)