differing thresholds for being alarmed

hi
my doctors in the uk have been ok with me doing the watch and wait, even though my counts have been bouncing just above 10 (and no higher than 25) since last Sept (despite two more attempts at anti-D). I bruise easily but generally not spontaneously, and I got one small blood blister in the mouth last week (but right by my back teeth, which I know cause ulcers from rubbing against the skin). But nothing else. So I have been happy to wait and see if my count can get a bit higher.
The trouble is that I am in Spain for work for 3 months, and being followed by a haematologist here who panicked at my count of 11 this morning, and is insisting I go back on steroids (or start something else, e.g. rituximab), saying that I am endangering myself by walking around with a count that low.
I'm not sure what to do. I hate steroids and wanted to avoid them at all costs. Equally, I did not want to try new treatments away from home.
I am wondering if the Spanish doctor is being alarmist. My doctors in the UK say they are happy to treat the symptoms rather than the count (though they're not happy with a count below 10 for very long). But I got a bit scared by this doctor here...
Is the lack of wet symptoms at a low count really significant, or am I taking risks?

Norita someone will respond who knows more than I do.

I just wanted to say we moved to Tokyo very shortly after my diagnosis and I was on prednsione - what a great hematologist I had there!! Then we moved to Hong Kong, still on prednisone - I liked my hematologist as a person but she would scare the heck out of me because she would panic with any little drop in my count so I really didn't trust her much as a hematologist. Almost every week or two I could count on her going into a panic and then me going into a panic because she did.

I remember a few times writing my hematologist in the States - no email at that time.

However I did not have a count as low as yours - I myself wouldn't be comfortable with an 11k, but that's me.

How much longer are you in Spain. Do you trust your hematologist there? If not do you think your hematologist there would get in touch with your UK hematologist via email?

Can you email your hematologist in the UK?

Hi Norita, well I've been trying to get use to counts around the 10k range and I struggle with this question. If I was travelling I think I would want the option of prednisone available if needed if there are no other reasonable options such as anti-D etc. I know pred would help and work quickly, for me, if needed. Are you getting your blood work followed up there? If you have access to treatment there or medical intervention, then that minimizes the worries. I've had 4 hema's now. Most of them didn't get too concerned unless I was having bleeding symptoms. 1 hema wanted to treat with counts below 15k, 1 hema below 10k. Now I have another new hema that would prefer to get my counts at 30k with treatment. How he explained it to me is that he's aware that our counts can drop by 10k spontaniously. If you only have 10k there is more risk. Sure lots of ITPers live with these counts and do their best to be comfortable with it.

I think this is a tough question for many of us. It's almost as bad as the question of splenectomy. You should have a plan B or option B if something happens.

Michelle

Hi Norita

Based on my short 8 months experience of my son's ITP, I would say that UK doctors seem a lot more reluctant to treat low counts. My son's consultant says that he treats symptoms and not counts. If the symptoms are insignificant (just bruising and petichiae) then he wouldn't treat. My son has been down to 1 on a couple of occasions without treatment.

The experiences I read about on this board seem to be based more on treatment being based on a number - say under 20 or some other figure. That would be quite different to the way my son's doctor approaches it, and sounds different to the way your normal doctor operates. I hope that you reach some kind of a compromise with your spanish doctor anyway which doesn't panic either of you too much!

Ali

Hi

Thanks to both for very useful comments and support. Yes, I am in email contact with my docs in the UK, and actually they are in contact with the docs here. Just writing to them this evening (the ones in the UK), they are not desperately worried about my count in the short term because a) I've had this count for a while with no bleeding except a few bruises and it is symptoms they look for; b) they know I have access to very good and immediate attention at the hospital 3 metro stops away should I need it; c) I am getting regular blood tests. But to ease my concerns they have suggested 20mg pred with the aim of getting a small rise in platelets while I am out here, and then review when I get back.
Interesting what you say about suddenly dropping 10. I hadn't thought about that.
I'm not particularly comfortable with a count of 10, especially not in the longer term. I was trying to see if the count would inch up by itself, even if just a little. If I could get a default count of 25+, I'd be a very happy girl...

Norita:

My first two thoughts were:

1) try a low dose of Prednisone - which I see you are already doing. It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

2) I would trust myself more. How comfortable have you been in the past with that count? If you were not alarmed before and felt okay, why be alarmed now? You know your body better than any one.

Good - glad you are in contact with your UK doctors and they in turn are communicating with your doctors in Spain! Sounds like you are in good hands all the way around!

Hope the 20mg will give you an increase in your count!

Sandi - oh my, I would think yes lots of side effects with 50mg , I remember that dose well & it wasn't fun [for me anyway!].

What are we talking about, Melinda? Where did 50 mg's come from? She said 20, which shouldn't be too bad.

It's late and I'm falling asleep, so I might be missing something.

Sandi I'm so sorry!

You may be falling asleep but I was having a sneezing attack when I read your post and I read it wrong :blush:

You said: It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

I read [between sneezes]: I might bump you up to at least 50

I'm hanging my head in shame and heading for the bottle of Claritin!

I agree, 20 should be able to raise your count high enough and not give u too many side-effects. I'm currently on 40 and i am getting quite a few nasty side-effects.

thanks. Your posts are very helpful. I will be curious to see if 20 mg raises my count, and also to see if I get any bad sad effects. If the answer is yes to the first and no to the second, then short-term lower doses might be a way for me managing the ITP when I am away from home, need dental treatment or whatever. Otherwise I am quite comfortable with watching for symptoms and not treating - tho I am aware that symptoms can evolve with time. I don´t even bruise over 15 or 20, and that wasn´t true at the beginning. It would be good if more research were done on the correlation between count and symptoms, and what the factors that influence this are. It can´t be entirely random, even if it is complex and very variable between people.

Melinda - I'm laughing so hard I'm having a hard time reading what YOU wrote! Too funny (not you Norita)!

I hope 20 mg's does work for you. Some people are very responsive to Prednisone....20 would work for me.

Hi Norita,

I'm very responsive to prednisone and 20 mg would work for me too. Last time I used 30 mg. After 4 days my counts were 30-40 mg and after a week they were 150. I think that you might get a faster initial rise if you use a higher dose which would could be important if there are bleeding problems.

I'm one of those people, like yourself, who can get by with a dose of 5 mg of pred or less, so I tried to get off of it last September. Unfortunately, my counts fell to 6K after 3 months, just when I was starting to get over the prednisone. However, I knew that I respond well to the prednisone so only stayed at 30 mgs for a week and then dropped down to lower doses fairly quickly.

I'm going to stay around 5 mg for a month or 2 and then try to get off of it again. It's worth a try at least.

I hope that you get your counts up quickly. I'm not comfortable myself with counts below 10.

Lily

i can tell you in 2001 i was diagnosed with a count of 9. my counts have run between 7 and 14 and i have never treated and never had a problem.

Freckles, do you have any symptoms at all? Easy bruising? Purpura?

norita,
i would say i have easy bruising, but thats all. however, i have diabetes and do not keep tight control. its known high glucose levels thicken the blood so i dont know if thats why i have no symptoms. the problem with that method however (not treating), is that if you ever need any medical procedures like an operation, you'll need to treat.

Well, a week on 20mg/day has raised my count from 11 to 43. I'm happy with that, and my UK doctors are happy. Spanish doctors still want me to increase the dose, but I said no... 43 for me is great.

That's a pretty good response. Are you going to stay at that dose or start tapering?

Lily

Am going to stay at that dose until I see my UK doctors next week (back home for a few days). I think they would like to reduce it then. But the Spanish doctors are very insistent on my getting higher counts, and they are telling me to have very frequent blood tests and up the dose. I'm impressed that they are taking a keen interest in me - they're ready to give me whatever treatment I want here (I guess it would all be repaid by the NHS, but that's not for certain and there is no mention of cost). Seems like a great health system from that point of view - very good, dedicated doctors doing whatever they think is necessary regardless of who the person is and where they come from. But it's making it a bit awkward, telling them my doctors back home are averse to treatment, where possible, and that I want to wait!

The doctor today told me that the treatment of choice here is Rituximab (after trying steroids and anti-d), and that they have very, very good results with it, around 80% (off the top of her head) not needing any more treatment for a long, long time.

Well, I flew back to the UK and had a test which showed my count had gone down to 18 (it had previously gone from 11 to 43 in one week on 20mg of pred), so it looks like that initial rise was just a brief surge in response to the steroids. After flying back to Spain yesterday I have a couple more bruises too, but I expect those now (there's nothing like air travel with its cramped seats and heavy luggage to give you a few knocks).

I was wondering, is there any evidence that air travel can lower platelets? I'd been thinking that the extra bruising is due to the knocking around, and also to the changes in air pressure - i.e. that the platelets stay the same but they're faced with a greater challenge. But is it possible they actually fall too? I travel a lot, and it seems each time I do I get a lower count. It could just be that travelling is tiring, and it generally takes it out on your body.

Anyway, the plan now is to try Rituximab when I'm back in the UK in April. What a complete pain all of this is!

I dunno, it would be hard to gauage if air travel can lower platelets, i would think the only way to know would be to have a blood test done while your in the air, but that still wouldn't prove it was the air travel that made them low. I think it would possibly be just the jet lag and that travelling does tire you out