Can I live with very low counts without treatment?

Long story short -- I have had ITP since 2006. Mine was a rather mild case until about 2 months ago, when my counts dropped to single digit. Tried various kinds of treatments since then, nothing has helped me so far.
My counts run between 0 and 10 when not treated. I feel alright, no bleeding symptons except for some patechie (not a lot).
After 2 month of non-stop treatmens, I want to give my body a break and not doing anything any longer (of course I'll eat a healthy diet and watch carefully for any bleeding tendency) Of course my hemo thinks that I am CRAZY ...
Just seeking suggestions/support on this idea

Many people do live with low counts like yours, because no treatments work for them. Watch for signs of a bleed and don't ride rollercoasters and protect your head. You are lucky you feel well, that's great! Some have fatigue and some feel fine.
Erica

Thanks Erica. I did have fatigue in the beginning but it's getting a lot better now. I started a gluten-free diet and are taking ginseng as a daily supplement. Not sure which helped.

Goinggo, what treatments have you tried?

I have tried steroid (prednisone and Dex), IVIG and RItuxan. Don't want to have my spleen removed so did not try splenectomy.

The answer to your question is certainly "yes" -- you can live with very low counts without treatment. I live with low counts, sometimes down to zero, as do others; not by choice, but simply because I have never found a treatment that works (other than IVIG, which will raise my counts only for about 72 hours; I use it in a pinch).

But I would not live with such low counts if I had a choice. Obviously, low counts bring risk. I have had three head bleeds at low counts; #3 had several causes but the first two bleeds were caused entirely by single digit counts. Bleed #2 put me in the hospital for six months, and I had to re-learn how to talk, walk, and use my right arm and hand. While I was very lucky and had a great recovery, the recovery was not complete and the stroke caused some permanent loss of use.

I hasten to add that head bleeds are extremely rare in ITP, although it is what many ITPers obsess about. I have had many low counts that did not cause head bleeds, so even in my case (where I seem prone to head bleeds for reasons no one understands) they are extremely rare.

Would I take this risk if I had a choice. No. My own health aside, it causes extraordinary stress to my family -- every simple headache brings stress and fear, and my 5-year old son doesn't always understand why I can't effectively coach his little league team, like other fathers do.

Each of us has to make our own choices, obviously, and ITP seems to treat different people differently. But, to answer a question you did not ask -- would I live with very low counts if I had a treatment (any treatment) that worked? No. Living above 30 is bliss.

Wow, 3 head bleeds!! That certainly will make me think twice before making the decision not to treat my condition. I don't know in my case if I still have a choice or not. Nothing that I have tried so far has helped me; but, there are "treatments" I have not tried because I am afraid to. Such as splenectomy. I have to weight in the risks v.s. Benefits to make decisions.

It can be a tough decision. You go through the treatments sometimes finding that they cause more problems than the actual disorder. A crystal ball would be helpful.

Would it be worthwhile to consider WInRho? I never got to try it because I had my spleen out before I knew about it. Some who have contributed to these discussions have used WinRho with success. (My splenectomy only raised my count for about a month--so I'm not a poster child for splenectomy. Prednisone does seem to work for me though.)

I agree, it is always a risk/benefit calculation. The side effects of some treatments can be very nasty, and worse. Some decisions are very difficult, others are not. After saying "no" for almost thirty years, I agreed to have a splenectomy after bleed #2, when my count was 4 and I was highly concerned about another bleed. It was actually a very easy decision to make, given the situation. That said, I certainly would not rush into a splenectomy and certainly not until pretty much everything else has been tried. You also have to consider whether you are a bleeder or not; some ITP'ers are, some are not. I know my ITP pretty well; I rarely bleed or even have bruises above about 15, and I have done some crazy things including climbing a lot of mountains (which used to be my hobby) with counts around 20. But, below about 15, or maybe 10, I bleed. Definitely. Everyone is different in this regard.

As always, education is the best answer, and then sleep on it and go with your gut. No one can expect to make any better decision than that, in my opinion.

Glad to see you back, Steve! You've been missed!

It's funny that as I read your post, I just had my first winrho. Hopefully it works and will keep working for a while!

Best of luck with the winrho. Be a bit patient with it.

Hi Sandi, thanks for your kind words my friend.

I second what Sandi said, Steve!

Thank you, Steve. I received Winrho on Aug 31st and platelets went from 8 to 17 within one day. So I think it worked pretty fast on me. However, one week after the treatment, I was at 19. Is this why you said be patient because winrho can take a while to kick in?
Thanks.

No (speaking for Steve), Win-Rho should peak after a week to ten days. If it's going to work, you'd see a good response in a week. It didn't work at all for me.

Thank you Sandi ... So it probably didn't work for me

Probably not.

Goinggo,

You might look into constitutional homeopathy treatment. At this point, if you've tried everything, what do you have to lose? It has helped a number of people here (most don't say anything) and others are still in treatment. I'm pretty confident my boy would still be at zero were it not for h-pathy. Nothing we tried worked for him. It can take some time to work through past drug treatments, but it IS possible. Just takes a bit longer and a bit more patience. We're into treatment just over a year and doing well. And you can keep your spleen awhile longer.

patti wrote: Goinggo,

You might look into constitutional homeopathy treatment. At this point, if you've tried everything, what do you have to lose?

Probably a lot of money.

Sandi, can we not have maybe just one forum for conventional treatments only as it seems that homeopathy is spilling out all over the place?

Not my decision, Ann. The alternative treatments section is appreciated by many, and was placed there by the website's founder.

It may be spilling out, but has at least been peaceful and polite. How are your counts doing these days?

Ann wrote:

patti wrote: Goinggo,

You might look into constitutional homeopathy treatment. At this point, if you've tried everything, what do you have to lose?

Probably a lot of money.

Sandi, can we not have maybe just one forum for conventional treatments only as it seems that homeopathy is spilling out all over the place?

Exactly how else would I direct this person to the section where it's discussed if I can't suggest it to them here since this is where they posted? And if someone was about to lose their spleen b/c nothing else has worked, do you not think that possibly, just maybe, they'd be interested in "one last ditch effort" to keep their spleen using something that has worked for others?

And sorry to disappoint you, but not a lot of money. Treating my son homeopathically was 100x's less then his hospital bill for 2, 2 day stays due to ITP. And that 100X's is not an exaggeration. It's an exact amount.

I didn't go into any details. Just suggested they look at other options. I probably should have told them they could read it on the natural board so they'd know where to look.

You just have yourself a nice day now........