ET for 12 years

[Mufftreacs]

I am currently taking 1500mg of HU on 5 days and 2000mg on 2 days per week. This seems like a high dose to me. I would be interested to hear from anyone who takes this sort of dosage. I suffer quite badly from mouth ulcers but am ok otherwise.

[jane13]

Hi, I was on a similar dose - with PV - but for a few months, perhaps a year. You certainly look well on it!

[Mufftreacs in reply to jane13]

Thank you Jane. I am hoping when my platelets go down my consultant will reduce the dose.

Thank you for the complement. I am actually 77 but I have a much younger partner. He does not allow me to get old!

[Helpatlast]

Yes I was on a dose like that when first diagnosed for a year or so - it's a very indivual thing re dosage as we are all so different in the way the diadems is for us and what it takes to control it - but I am sure you will be lower doses in due course as things stable out - and i found the dreaded ulcers etc went after a while too once the body adapted to the trestment. All the best

[Mufftreacs in reply to Helpatlast]

Thanks for that. It is great to know other people had ulcers too. Thought it was just me.

My body seems to cope OK if the HU is reduced by two per week. Can’t believe 2 extra capsules can make me feel so bad.

[Ramy22 in reply to Mufftreacs]

I have taken 2 a day for over a decade. I haven’t had side effects at all and am fine. I have ET.

[Wyebird]

Hi I have ET. I I 17 x500 a week and have just had 1 capsule of anagrelide a day added. I don’t think I can tolerate higher than 17. I definitely think the higher the dose the more lethargic I have become. I too went through a spate of mouth ulcers. Sporting 5 one day. I’m ok now though. Oh by the way, I posted a similar. question to you a few months back, One person replied 3 a day.

X

[Mufftreacs in reply to Wyebird]

Hi Wyebird,

I take 23 capsules per week. That seems a lot to me when my platelets are 575.

[Wyebird in reply to Mufftreacs]

Oh my word. I thought I was on a lot!! My platelets were 456 on 17 capsules. I’ve been on anagrelide in addition for 8 days now. Anagrelide targets platelets only. Apparently hydroxicarbomide is marginally better. I can’t cope with life if I’m on over 450 I just doss around and don’t do any exercise. I’ve had to go to A and E a few times because I’m so bad. Before ET I would swim 2 x1/2 Miles, walk and do a really difficult yoga class a week. At the moment nothing.

You seem to be coping really well but maybe a change in medication might suit you. I’m 62 yrs old. I’m hoping that anagrelide will help my quality of life.

Good luck.

[Wyebird]

LOL-Oophs-just done the maths. Your hydroxicarbomide dose is slightly higher than mine. (19 tablets a week if I’m right. I’m on 17)

[Tico]

Hi mufftreacs,ave u been on various doses in the 12yrs? Do's the haemo vary it cos of platlet count? & what r ur average counts like or have ur counts recently began 2 rise? I've had et jak+ for 10yrs,counstant problems wiv counts more so recently.highest dose 5hu 7days a week! (2,500 daily) regular haemo horrorfied wen he found out & reduced it.previous tia b4 diagnosis then larger stroke 2015, my advice wud be 2 question it wiv ur haemotologist& perhaps dicuss other drug option.in my case i think it's a postcode lottery, ave wen i told a lovely haemotologist i did not like being on hu & asked if it was a cost thing the nodof the head told me all i needed 2 know! By the way at present i'm on 3hu 7day's a week& platlets still fluctuating, if only we had more of a choice & say over our own health & life! Hoping u get ur answer ur looking 4. Atb tico.

[Mufftreacs]

Thanks Tico for all that info. I am also Jak2+ and my platelets have been fairly stable for the last 5 months. Below 450. Never had a TIA or no other health problems. The trouble is, I spend half my time in Australia and the other half here in the UK. I have to have medical assistance in both countries. It is ok when both consultantants come up with the same advice.

I am very comfortable on 3HU for 7 days but both consultants have suggested that I increase the medication by 2 as they have shot up to nearly 600 since I have been here.

The extra 2 capsules make me feel really rough.

What level are your platelets at the moment?

[Hidden in reply to Mufftreacs]

Hi there, I am new to the group but noticed you seem to be about where I am. I was also diagnosed and JAK2 positive 12 yrs ago. I am on 3 tabs (1500mg) per day and have been for the last 3 yrs. Now my platelets are up around 670 and the hemo wants to increase my dosage but I am resistant. You refer to long haul flights. I wrote about this in my introduction after reading your post as I do find they don't help my blood results. I have decided not to take any more even though my daughter lives in South Africa and I'd love to go and see her again. Is it essential you continue with flights? Having lived in France (now in UK) I found warmer weather, healthier diet and less stress all helped my blood. Maybe things are very different for you in the two countries?

Hope all this is of help

Best wishes

[Mufftreacs in reply to Hidden]

Thank you for your prompt reply.

It is not essential that I come back to the UK but I would hate not to be able to see my friends and relatives. The strange thing is, my platelets don’t increase after the flight back.

You are right about the warmer climate and everything was stable for 6 months before I came back.

I wonder if stress is part of the problem?

[Tico]

Unsure exactly bcuz of wildly fluctuactions haemo specialist nurse called me around 3 weeks ago bcuz of a concern over my white counts,so stressed & tired & also very busy, told her i wud dicuss it wen in clinic on the 5th sept.i have lost a lot of conifidence in my haemo team of late & did tell them i was going 2 ignore their advice to next in clinic, PLEASE,do not follow my advice,this is a personal choice & i urge u 2 speak 2 ur haemo about it. Atb.tico.

[Helipilot]

Hi, I have been taking 2000mg a day for the last several years that is now keeping my bloods stable. I too suffer from mouth ulcers and am looking for a better solution than Corsadyl mouthwash!!

[Mufftreacs in reply to Helipilot]

I have tried everything for my ulcers and all recommended mouth rinses are useless.

I do find that rinsing my mouth with milk of magnesia last thing at night, helps the soreness. I don’t swallow it.

The trouble is, it it banned in Australia and there does not seem to be a substitute.

[Judypinner]

Hi. I use an aloe toothpaste. I have had no mouth ulcers for ages. It is also a very good toothpaste . Fresh and clean. Only a small amount (size of a garden pea) ( not the posh petit pois) on the brush . My dentist recommended it to another of her patients. I use a certain brand but not sure if I am allowed to name it here. Question for Maz?

[Mufftreacs in reply to Judypinner]

Thanks Judy. Worth knowing.

[Hidden]

Hi again, Just realised you had sent me a reply which i hadn't read. I have found the same - the medical community won't acknowledge anything outside their domain as affecting the condition. I have found it a personal trial and error journey and in my experience external factors do affect my bloods. I closely monitored it all by keeping records.