New dx, when to start médication?

Your Haematocrit is high but the Phlebotomies should help to reduce and control that however, the Phlebotomies themselves can in turn cause your platelets to then rise, which happens in approximately 50% of patients with primary polycythaemia. I was able to control my levels for a while with Phlebotomies and a drug called Clopidogrel, which is a blood thinning agent but finally had to go on other medication as my platelets just steadily got higher and higher. First line treatment here in the UK is Hydroxycarbamide tablets or interferon alpha injections depending on your age. I was offered either drug and decided on Hydroxycarbamide as I wasn’t too keen on the possible side effects of interferon. Other medication such as Jakafi are offered as an alternative  if these first line treatments are considered in-effective or are not tolerated well by the patient. The thing to remember is that primary pv affects people in different ways, no two people are necessarily the same although I can relate to the migraines and tinnitus that you suffer from. I used to suffer terrible migraines with aura but these have stopped. They didn’t stop straightaway in fact, they became worse shortly after I started the Phlebotomy programme but approximately 5 months into the treatment, they finally ceased altogether. The tinnitus however is still there. I do have moderate hearing loss as well so it is not known whether this is caused by that or the pv however, my audiologist fitted me with two hearing aids and this has helped enormously with my tinnitus as well as improved hearing. The problem is when it comes to night time and I have to take them out to sleep. I bought what is known as a “tinnitus relaxer”, which is basically a sound oasis, which plays various soothing sounds of nature such as rainforest, surf, running stream, rain etc, It detracts from my tinnitus and helps get me off to sleep. The music can run continuously or at 90, 60 or 30 minute durations. When playing the 90, 60 or 30 minute programmes, the music volume gradually gets quieter and quieter until it fades completely.  It even helps my wife to doze off as well, so no conflict there which is great. I bought it from an online company called “Action on Hearing Loss” and for me it has been a god send. Look them up online. The devices are not that dear and you may find it will help with your tinnitus too. I generally play the 30 minute duration!

Hope the above helps a little.

Kind regards

Keith

I believe Jakafi may work for you, give it a try and share with us your result.