ITP is such a nuisance!

Well actually, its not ITP thats the nuisance, its medical staff who don't understand ITP and panic about it. It seems like every time Dougie has any other medical issue, it gets ridiculously complicated by the fact that he has ITP, and most of the time its simply not necessary!!!

Dougie has just started a course of an anti-acne drug. He first got referred last August, and it took over 4 months to start after the dermatologist said that he needed treatment. That was because they were panicking that the drug would react badly with his platelets and wouldn't do anything till they had the say-so of the haematologist in triplicate (the NHS is REALLY slow with things like that, and it doesn't seem to communicate too well between different hospitals, so that took a lot of phone calls from us to chase up the damn letter). Anyway, he did finally get started on the tablets, and then last week he had a blood test and his count had dropped from 30ish to 14. That just seemed to send the dermatologist into complete unnecessary panic. they phoned my husband and then me at work - we both said not to worry. Then they phoned and wrote to Dougie's GP saying that Dougie must stop taking the tablets immediately. What they should have done of course, is phone his haematologist themselves and ask - so thats exactly what I did, and guess what......he said not to worry too!!!

In any other context, Dougie's ITP isn't really a problem to him or us, but this whole episode has required enormous amounts of intervention by us to get his acne treated at all, and it really shouldn't be necessary. I feel like the dermatologist could calm down if they just talked to Dougie's haematologist - does anyone else have problems like this???

Sorry for ranting!

Ali

Alison:

I don't really have an answer to your ITP frustration, but I do have a suggestion for an alternative treatment for acne. I've been reading a lot about organic coconut oil helping acne since it is a natural bacteria killer. Supposedly you can take it internally as well as using it externally on skin. Might not hurt to try it.

Hi Sandi

Thanks for the suggestion - I keep seeing coconut oil as a remedy and its probably about time to give it a whirl. I don't think it can do any harm, and I've had a run in with the dermatologist this afternoon as they were still refusing to listen to his haematologist and therefore not prescribing the acne treatment according to guidelines. For the first time in my life, I actually made a complaint against the hospital. I know they are just being cautious, but ignoring the advice of Dougie's consultant in favour of their own panic is just ridiculous.

Other people must get this all the time, with one condition adversely affecting the treatment of another, but its the first time I've run up against it, and in this instance, its so unnecessary!

Thanks, Ali

Good luck! Maybe the coconut oil will help.

hmmm coconut oil that could take up to a year. By time you fill out the paperwork contact the doctor who will of course need to speak with a dermatologit who will tell you that is a natural product do not waist your time than say we will need to consult with the hematologist. hahaha just kidding


Rant all you want I agree ITP is a nuisance. Even with my counts up no matter what you do ITP and hematologist has to be involved! The best part was when I had a UTI the doctor in urgent care had to test my platelets first before he could test my urine to confirm I had a UTI. lol

Winnifred, That is awful. Like ok I am not my low platelets. I am a whole person not just a single system.

Duh!

It is a bit disconcerning to find yourself teaching medical professionals about ITP.

Had to with my opthamologist yesterday.

I hope you get some relief with the coconut oil.

Winnifred - OMG, That's so funny and terrible all at the same time!!
We are trying the coconut oil but it's difficult to tell whether the improvement is due to that or the Roaccutane that he is taking. It's definitely doing no harm. I hate to admit defeat on Roaccutane after the struggle he had getting it, and especially since it appears to be working brilliantly for his acne, but I think we might have to because he's having so many nosebleeds - at least 1 or 2 every day. The bathroom frequently looks like there has been a mad axe murderer in there!

Oh no!

The comment about axe murderer brings the image of Jack Nicholson staring through the hole in the the door in The Shining to mind. :evil:

Last thing you need. But happy you still have your sense of humor.

Alison

I've just looked at medicines.org.uk & the MRHA on gov.uk and unfortunately both of them list ITP as a very common side effect of Roaccutane

The dermatology nurse also said that but I don't think that's the problem here. He has no other symptoms and she is forcing him to get a count every fortnight. Three weeks ago it was an amazing 55 and the last time the hospital didn't phone me up having a panic about it - I am assuming that means it was okay! He's got another appt with her next week so we will check then.

OK, three nosebleeds yesterday, four the day before - house still looking a bit like a horror film. Despite its miraculous effect on his acne, I am not at all sure that Roaccutane is a good drug for Dougie!

Yeah, I'd say that you are right. Poor kid. Are you still using the coconut oil?

That many nosebleed time to stop the medication.

Do you think the acne med is making the platelets ineffective? Or is it lowering his counts?

I wonder... if his counts are high enough but still bleeding, does he have bruises too? Or just the nose? Seems if the acne med was making platelets less sticky he would have bruises also.

Yes it can be difficult juggling drugs with ITP. Good luck finding your answers!

Its been a while since I was on here! Nosebleeds have finally stopped with a reduction in roaccutane dosage, so it looks like it was the drug not the ITP. Acne is getting loads better, some scarring but he looks more like himself again The dermatologist is still paranoid about his count so he is getting tested every three weeks or so and seems to be around his normal 15-20 again. Even when his count was 11 though he seems to have zero symptoms which has got to be a good thing. He used to bruise dreadfully at that count.

I realised the other day that he hasn't been to see the haematologist since last July - getting on for a year soon! Ha, maybe they have forgotten about him, its possible since he is supposed to be transferring to adult care soon. I can but hope!