Has anyone else had problems swallowing the Hydroxycarbamide tablets? Been on them for 8 years and only just experienced this.

[mol56]

After checking with the Haem dept on News Years Eve, I have been cutting the tablets in half and emptying the contents into a large glass of water. Although I was told it was ok to do this, I am rather apprehensive about it especially as I have a hiatus hernia. Am on 9 tablets a week and have ET (Jak2neg) diagnosed almost 9 years ago. Will attend the Colchester Forum in January and may question this.

[LouisePRV Volunteer]

Hi no problem swallowing tablets, but my hair has suddenly gone very frizzy and much curvier than usual!

Anyone else experienced this on Hydroxy?

I've been taking it for 4 years.

[Reflex4]

Hello Mol56,

My partner, also has ET, Jak2neg and was diagnosed about 10 months ago - He also has another condition called Eosinophilic oesophagitis, which is an allergic inflammatory condition of the oesophagus, coursing swallowing difficulty and food impaction. Given he has this swallowing problem he was given hydroxycarbamide in liquid form, which his Heam had to request, but there was no problem in the hospital excepting that request, but would take a few days to sort out, so would have to start on the tablets first - After his Heam asked around for professional advice about my partner breaking the capsules in half, he was told NOT to break the hydroxycarbamide capsules apart as they are cytotoxic and if the power got on the skin or over the work surface then toxic contamination would occur, plus the glass you use would also be toxic and should never be used by anyone else. It was all very scary at first to hear all this to be honest.

The liquid form only has a shelf life of about 6 to 8 weeks once made up so the hospital pharmacy always work out when his last lot will run out before they re-order his new lot, they are great.

I hope this helps, as there is a lot of conflicting advice out there and you will read on the internet that you can mix in a glass of water, but at the end of the day the professionals told us other wise and so my partner never did and unfortunately did get some of his tablets stuck, but happy to say that within 3 days he got a phone call to say his liquid form was ready for collection

[mol56 in reply to Reflex4]

Thank you for your advice. That is very interesting. I have an appointment with my G.P. on Thursday (first one I could get when ringing on New's Year Eve!) to ask about this full feeling in the throat. I do have a ventricular ectopic heart beat which can cause this feeling but it is hiatus hernia complications that I am concerned about. Also I am suffering from a virus at the moment which does not help matters and I know that I am anaemic as well (from recent blood test and telephone consultation with Haem nurse on Christmas Eve.)

My consultant was on leave when I rang the haem dept on New Year's Eve and my usual haem nurse was involved with her clinic. I was assured it was okay to take the tablets in water and I do drink LOADS of water with them before and after and am careful about getting it on my hands and have a designated glass and spoon kept away from anyone else. Am still waiting for my next clinic appointment to arrive in the post.

Normally I have few problems but recently have felt that I have not had the care I used to have. Sorry to moan a bit, just feeling a bit sorry for myself. Expect I'll pick up soon.