low dose Ruxolitinib

[Bobadog]

Hi

I have been taking Ruxolitinib for 2years.

The dose was decreased from 10mg to 5mg once daily,

I was pottering along quite fine .

Then my h/c lowered to. .37 ,fatigue etc,WBC 12.6/neutrophils 10.5 :

This is followed a chronic viral/ flu infection ,which eventually caused bilateral ear drum rupture(not PV related….just low resistance to infection)

I was put on 70mg steroid with antibiotics for one week for the ear problem ,(checked this with Guy’s )

I stopped the steroids (gradually) after 4 days as the steroids resulted in serious fatigue and further infection.

I dropped the Rux dose to 5mg on alternate days ,after consulting Guy’s via email.

(It is apparently verboten to split the tablets to 2.5mg ,and here in the UK there is no supply of 2.5mg tablets?)

Has anyone else dropped to this alternate daily dose?

I wonder if I was being over cautious about the low h/c level ?

Any advice most welcome on this subject,

All the very best to you all,

Many thanks

Bobbie

[ainslie]

for what it’s worth I have been splitting Rux 5mg to 2.5 mg since 7 years, in fact at one point I was splitting 5m into eights ie 0.64mg . The problem is that the NHS docs are allegedly not allowed to write a prescription for 2.5mg because there are no 2.5mg pills.

I have checked with several top MPN experts in the UK and US re splitting pills and they were absolutely fine with it. Pharmacist of course don’t like it. They can argue that one can’t split them accurately ie maybe 3 mg one day 2 mg the next but that doesn’t matter. Some patients are on 15mg am and 10mg at night , obviously a much more uneven dose.

Whether 2.5 mg is the right dose for you is of course a discussion between you and a good Haem.

[Bobadog in reply to ainslie]

Hi Ainslie

Thankyou so much Ainslie for your reply.

I totally agree that it seems more preferable to take a daily dose rather than alternate days ,even if it ends up 3mg/2 mg.

I have a pill cutter which is fairly precise.

The NHS obviously has to abide by the protocol…

I shall discuss my ongoing dosage with the haematology team at my next appointment.

Thanks again,for this re assurance,

All the very best,

Bobbie

[caroline_284]

I have been on ruxolitib since November,and have been doing OK,with doses changed from first 10 twice a day,then when becoming slightly anaemic back to 5 twice a day. And now different consultant has changed it back up to 10 twice a day,saying the smaller dose was not enough. I just rely on what each new set of blood tests and what the consultant tells me. I just have to wait now until my next jak2 blood test to see,hopefully if its come down at all. Good luck with your treatment.

[Bobadog in reply to caroline_284]

Thankyou Caroline.All the very best,Bobbie

[EPguy]

I agree with ainslie on splitting. I looked into it a few years ago before I was on it. I contacted pharmacists, asked my Dr, even asked Incyte the mfr of it, and no one had a reason for not splitting. I also checked its ingredients and it has none that suggest a time release coating that could be affected. Anyone who has taken it knows it's chalky like uncoated aspirin. And we know it's short acting (a good reason not to vary the daily dose) which is consistent with no special coating.

There is the child study, not MPN related but evidence these researchers were ok with splitting

pubmed.ncbi.nlm.nih.gov/283...

" 2.5 mg twice daily if <25 kg"

You should ask your Dr -why- splitting is not allowed. If there is a specific reason we all could benefit to know. Your Dr already is using non standard practice of once per day vs two, so it's inconsistent to declare another non standard practice off limits absent an explanation.

Of course Incyte is not keen on it since it could save some pts or insurers a lot of money.

[Bobadog in reply to EPguy]

yes I agree with your opinion,

I’ll ask their reasoning again at my appointment ,

I’m back on 5mg daily now, as 5mg on alternate days caused h/c to increase sharply after 2 weeks

many thanks EP

All the best

Bobbie