Living with low counts

Any information out there about people with ITP who have gone for relatively long periods of time with very low counts (e.g. <10k)? After mostly ineffective treatments and being under 10k for several months, I am looking at trying some alternative treatments. However, it's likely that during that trial period, I will end up <10k for a bit longer. My symptoms have been relatively minor even at those levels (other than the stress of worrying about internal bleeding).

Has anyone else dealt with very low counts (<10k) for long periods of time? Under what circumstances? How did it go?

Thanks for the help.

Will

Hi,

Not sure what you consider "long term" but here's what we did. Our boy was 11 when dx and did not respond to treatments. After IVIG we tried prednisone for 4 days and he bled like a stuck pig - he was not normally a bleeder. He was at zero for 3 months. During that time we used HIGH doses of Vit. C to keep his cell integrity strong and Vit. K for clotting help. He wasn't real active. We kept him pretty low. After 3 months we opted for homeopathy. He felt better immediately but we did not see platelets for a few weeks. We had to "undo" some of the drugs he'd taken and when we did that we got platelets. We bounced between 35 and 235 off and on while his body healed. Last count was 188K and we've been stable for awhile now. Another benefit of the homeopathy is it didn't just get his body healed of ITP. It has taken away almost all of his food allergies (he had 40+). H-pathy heals the entire body, not just one issue. So any other health issues along the way get cleaned up as well.

Best wishes!

patti

edit: I suppose I should throw in that we were doing bone broths 6x's a day and juicing 3-4 times a day to try and keep his body strong as well. But we'd been doing that for months already. He had malabsorption issues so we were mostly trying to keep nutrition in him. Not so much related to platelets, but wanted to throw that in because it was part of keeping him stable when he was at zero.

longest time I went with a low count was back in 1994. I was kept in and had a count of one when they given treatment. After six weeks they took my spleen out and my counts went up. From time to time they drop but a few days in and on prednisolone and sometimes IVIG sees them back right again. Till the next time;)

Will:

Some people choose not to treat when all else has failed. Most do well, but it depends on symptoms. I went months in the 20's without treatment, but any lower and my symptoms would increase the longer I was down, so I did treat below 10.

Thanks for the responses so far. A few things I've been thinking a lot about:

- I'm 38 and have been athletic, healthy, and active my whole life. So, in some ways, I'm working off a good base of general health.
- My doctors have actually been pretty amazed at my lack of symptoms even when counts have been very low. Petechiae pretty much go away above 20k. Purpura (blood spots/blisters in mouth) and some minor bruising show up around 10k and under. At 5k had a couple of large purpura in mouth that bled a little. Only time with a small nosebleed was at 1k the day I was diagnosed. Pretty lucky I think considering some stories I've read.
- It seems to be true, at least in my case, that at very low counts the "fresh" platelets are "stickier" and more effective at clotting. Not that it makes up for only having a few, but it seems to help to some degree with avoiding major bleeding problems.
- My doctor(s), who I really like, do have me pretty scared of the potential for internal bleeding with counts under 10k. The idea of brain hemorrhage or other potentially deadly spontaneous bleeding is pretty unnerving. I feel like for the most part I can avoid activities that would cause bruising or bleeding externally. But the spontaneous stuff...seriously scary.
- I have 2 little boys, and I really think about them when it comes to trying to decide what to do.

Thoughts?

Will

Will, I was just wondering if you know if your blood pressure is very stable. Mine isn't. Goes up and down and is very sensitive to stress. Regular BP monitoring is not always recommended as it can make some people anxious, but I find it reassuring and has helped me to recognise the signs when I am hypertensive so I can do something about it ie relax. BP monitoring is what doctors usually request when concerned about cva's/strokes.
Anyway just thought this could help. If you think it could be appropriate you could talk to your doctor about it.
Good luck,
Sally

Will,

We were told the risk of a spontaneous bleed was less then 1%. Is that what they're telling you? I realize if someone is the 1% that risk is too much, but in the big picture, it rarely happens. One thing to note would be if you do go down to zero or 1 (as we did for a long time), you would want to lay low until you could at least get to 5 or 10. At 5 we would let our boy pretty play normally in the house, but not outside (we live on land). We did not take him in a car for anything other then to the lab for blood work. So, you do have to use some pretty strong precautions, I think. But it is doable and for us didn't last long once we chose our mode of treatment.

Sally is your bp all right unless you are stressed? Are you on bp medication?

I realise it is different for me in that am English and our welfare system is very different - thankfully. But I would opt for treatment because even 1% chance... (with my history) having had the spleen grow back plus having a relatively rare dissorder ITP in the fist place ... I tend not to want to push my chances in assuming that I would never have a brain bleed by leaving it. For the sake of four to seven days in hospital and a month of steroids for general peace of mind outways the not to treat philosphy for me.
If I have a brain bleed whilst it is being treated, then I have done everything. If I left it to try and heal itself in time... and it did get worse I would only have myself to blame. I am not a mother etc but still life is not to be taken too much for granted.....
That is my own intake on it if it helps you to make up your mind. Sounds like from what you are really saying, is that you want to have it treated because you are a mother. It sounds like you are saying you don't want to have it treated because you have been so fit and healthy and don't understand why this has got you?
I wouldn't want the dissorder to get too severe so it becomes a moutain to treat. If they treat it straight away, it is straight forward. Left half a week because seeing if can treat itself then other complications may happen with it which would make it harder and more costly (for americans) to treat.
Does that help you?

Hi Melinda, Yes, my BP is fine normally. It goes up whenever I go to see doctors but not too much. At work once I knew I was very stressed so I took it and it was 200! Normally it is about 130/90 but is very labile. No, I don't take any regular medications.

Great Sally! I have a friend who has white coat syndrome too [high at the office].

Will:

Having children (they were young when I was diagnosed), I didn't push my luck when counts were low. You seem like a very level-headed person, but you have to think about how much the kids need their dad. Chances are, you'd be just fine, but it is a risk.

Sorry - I had to put that out there. I was never one to panic at low counts either, always went about my normal day no matter what the count was, but I did treat because of the kids.

Thanks for all the responses.

Sandi, what ended up being the treatment that worked for you?

Yes, the kids are the major factor in most of our decision-making.

Gathering more info and will make a decision soon.

Thanks, Will

Rituxan. I had it first in 2003 I think, and it gave me 13 months of being treatment free. I had one infusion after that, and have been in remission since. Actually, I think I am hitting 7 years of remission this March. I have dipped into the 60's a few times, but rebounded on my own.

My case is different though because I don't have primary ITP, I have ITP secondary to Lupus. I am also on Prednisone for life (between 5 and 20 mg's day), so that is also a factor in my counts.