ITP and Neutropenia

[Tenk]

Does anyone have or know anyone who has both of these disorders at the same time?

I'm living with both since diagnosis two months ago and am finding balancing the needs of the two quite tricky.

Tenk

[KPA_1]

HI my son age 14 has both ITP and Neutropenia. Every time he has an infection whether it is bacterial or viral his platelet counts plummets. We have lived with ITP for 2.5 years and neutropenia for 1.5 years now. Initially he was just monitored, but now we have moved into active treatment stage. We are due to try Ritoximab for the first time this summer, as that can potentially help on both.

But agree it is tricky with both, winter time is particular tricky as there are so much going round. He seem to pick everything up and he is missing school a lot because of it.

[Tenk in reply to KPA_1]

Thanks for your reply, it is useful to know there are others out there although I'm very sorry to hear about your son's experience of these disorders.

Would you mind if I ask you more questions?

How low does your son's neutrophil count go to? I tend to get down to 0.3 but I find I pick bugs up very easily even at around 1.

Is there anything that helps keep the immune system bouyant? Exercise?

Does he have to be hospitalised with fevers and if so at what temperature? I think I have a hotter than usual temperature and have recently been increased to 38.5 degrees before I need to inform the haemo department.

Does the haemotologist think that having both disorders is just an immune system idiosyncrasy or are they investigating an overarching cause? At first my haemotologist seemed to imply there might be an overarching cause, but after some investigations they seem to have stopped looking for this.

Was the 'watch and wait' idea your or the haemotologist's? My platelets have recently risen but my neutrophils are still low but I'm waiting a few months to see if the neutrophils rise. 1.5 years seems a long time to wait especially through multiple infections etc... before moving to rituximab. (You and) your son must be very much more patient patients than I!

If you have time to answer any of the questions about, if they are relevant, I'd truly appreciate it.

I'm trying not to bombard my consultant with lots of questions in the ten minutes I get when I see her, so learning from others is really helping me right now.

I do hope your son 'grows out of it' as many children with ITP do. Not sure if the long term prognosis is similar for neutropenia. I do hope so.

Thank you.

Tenk

[KPA_1 in reply to Tenk]

HI Tenk,

Many thanks for you sympathy. it sounds like you are in your early discovery of your ITP/ Neutrophil Journey if it is only two months since diagnosis. It can be quite some roller coaster experience, So am glad that I can share some of our experience. Although yours may be very different to my sons.

I guess we have not really focused too much on the neutrophils, Although I reality it is probably the neutrophils that has caused the most disruption to my sons school. With ITP in children they tend to wait and see if it should disappear by it self. Particular if there are no spontaneous bleeding. In the majority of children it disappear after 6-9 months they say. But unfortunately we have not been so lucky. Initially we started out at a local hospital but were then transferred to London after nearly a year as they could better deal with my sons case. That's also when it was discovered that the neutrophils were low too. But the doctors keep saying that they were sure the neutrophils would go up again. I guess they were using the wait and watch approach here too.

My sons neutrophil counts have ranged from 0.1 to 1.1 while they have been monitored. Last year was quite bad and he had two chest infections among numerous colds, So he was on antibiotics.. As for fewer my son doesn't seem to get much fever when he is ill, We have only had one incident in the early days where he had 37.8 deg. and we went to hospital (had been instructed to go to A&E if it got to 38deg.) A&E prescribed him antibiotics. Looking at the neutrophil counts they were around 1.0 and 1.1 when he had the chest infections so I can't see a connection with low neutrophil counts and being ill. Regarding fever i actually think fever is a good thing, as that is the body's own response mechanism so if you are having fever it means your body is reacting to the infections.

Last year in May we were given some preventative antibiotics, due to all the chest infections he had had. We were also due to start on the Ritoximab But then out of the blue without any medication his platelets suddenly jumped initially to 97(66 after a recount) so the consultant and we thought that my son was recovering by himself, and it was decided not to do the medication anyway I need to mention that while his platelet counts were high and he felt great, his neutrophil count remained low.

In the autumn and this year my son has mainly had stomach problems, sore throats and sinus infections. No fevers and no serious bacterial infections. so they have seemed less severe than last year. However his platelet counts have been on max 11 since January, they believe sparked by a simple viral infection again. Previously I would have said that my son isn't a bleeder with low platelet counts, but within the last month and a half he has had some bad spontaneous bleeds. He was given . I guess that we were kind of hoping that his platelets would jump up high again approaching the summer, but it doesn't seem to. So now we have to try the medication route.

So yes maybe we have been patient, but then again i don't really want to expose my son to some of the very bad side effects, some of the medicine can have, if i don't have to. particular as the chance of full recovery with the medicine in my eyes are quite low. My son does see it differently though and for him the worst is the tiredness and that fact that he can't do contact sport. Lately the bleeding have also been scary, but in a way he is happy that he will finally start some medication.

What level are you platelets at currently and and what is the worst for you currently with the ITP/neutropenia ?

[Tenk]

Hi,

Thank you so much for your considered and lengthy response; it helped me to see that the tricky balance between neutropenia and ITP is something everyone with both of these disorders faces.

I have found that the neutropenia is hardest to manage recently but that is because I kept going above the 38 degrees and being told to go to a&e.

I've recently been given antibiotics to keep at home and also told that my fever limit is now 38.5 for a few hours; which should keep me at home more when ill as I have only reached 38.6 for an hour or so when recently unwell.

Neutrophils have been around 0.4 for almost two months now but thankfully platelets have risen on their own to 199, which I'm amazed at as they were hovering around 30 for the whole time I was on steroids then only rose after I came off them.

So, it is hard to say which causes more problems as I've only been diagnosed for 3 months. At first the platelets seemed to be causing more problems and neutrophils went up from 0.3 to 1.7 within a week. but then with the neutrophils dropping bCk to 0.3 and staying around that level then four emergency admissions in four weeks, the neutrophils were definitely more disruptive. I had to cancel a lot of work!

But now with my new rules on fevers and antibiotics at home, I'm feeling less anxious about neutrophils although I'm still regularly picking up bugs but they are only raising my temperature to just below 38.

So, it is all a seesaw of which one is worse depending on which one plays up!

I intend to stay away from all medications for both disorders.

Thank you for your response.