what is a high dose of Hu ?

would i be affected with side affects since started on sept 30th i went up gradually to now one a day for 7days and today have tummy pain and upset tum , not sickness just headache chills and yuk feeling i also hav bad head cold bad timing at christmas time regards holly x

[chrissie1959]

Hi I'm on 1000 mg a day also have lot tum pain and achy joints mouth sores and tingly feet, my count has started to rise again so properly increase this new more tab x well without it be in a mess x its different symptoms for everybody xxx take care holly x

[Hidden in reply to chrissie1959]

Oh yes seems high what you taking Chrissie .i know we need it but if we had to stop HU whats alternative ,i dont think there is anything maybe im not aware there is ? will see what hosp say in jan 11 th when i see dr have a lovely Christmas im at my sons tomorrow so pleased way i feel im not cooking xx

[chrissie1959 in reply to Hidden]

Always best to ask consultant or doc x I'm going Jan 17th x hope you get answers x have a lovely Xmas holly and healthy New year x we home this Xmas and chilling xxx

[Inca in reply to Hidden]

My last test two weeks ago,H C T 54and Plaquettaire only 90 !!Dr wanted to lower my Hydrea,at the time 2 per day 3 on two days ,to 2 per day,after contacting consultant he said no,that I must go up to 3 ,2 alternate days.....I feel like a rag doll, wobbly,tum rotten,achy,head muzzy......just recovering from face op and chest infection......now worse than ever!!!So yes ,increased dose affects us ,me anyway. Have a Merry Christmas Both,Sally

[katiewalsh]

Hi, what a shame to feel so rotten at the holidays. I guess I'm one of the lucky ones. I take 1,000 mg alternating with 500 mg daily. My only side effect seems to be mouth sores. And I was instructed to mix 16 oz of water with 1 teaspoon salt and 1 teaspoon baking soda then 2-3 times daily rinse my mouth trying to keep it in for 1-2 minutes. It's really helped with mouth sores. I wonder if you have something else going on. Maybe you should see your internist or regular doc and get a check up. I know we all assume our health problems are from the meds but that's not always so. Good luck. I sure hope you start to feel better soon! Katie

[Hidden in reply to katiewalsh]

Thank you katie , yes im waiting for ultra soound on my tum which show gall bladder kidneys etc to check as a precaution happy chritmas xx

[Hidden]

Not very high, I'm on 2 per day then 3 per day sat/sun and I'm sure there will be some on more than me. They kept increasing from 1 daily until platelets at appropriate level

[Helpatlast]

Hope you feel easier soon Holly - but no you are not on a high dose at all - I have been on HU for 10 years and initially was on 3 capsules per day each day and in recent years it's 2 per day each day and some times up to 3 for the two weekend days - so you dose is low and shouldn't be giving you any of the symptoms you mention - HU is a very well tolerated drug and really does a good job on our platelets - vile I know when starting and you can't help but think what is it doing to me - but remember the good it is doing you in controlling your disease and in that way it can be seen as a friend. You are sensible to check out with your doctor just to make. All the best x

[Hidden]

Thank you for your lovely reply ,yes im actually wondering if i had and have a touch of gastrict flue i was fine christamas after my small dinner and this morn i wole up with gripy pain in top of stomach bloated again and lots burping but went off after i went to bathroom ,these are rarther unusual symtoms for me and im told there is simalar tummy bug going around at minute i still have heavy cold which doesnt help but yes will still want to be checked out still hope you had good Christmas day regards Holly

[Malaika]

Hi Holly sorry for the delay in replying. When I was taking Hu it was 3 a day. They did try 4 but that completely wiped me out. After ten years Hu stopped controlling my platelets and I am now using Interferon. Although difficult at first I now have "normal" counts something I never had before. Initially Interferon was quite difficult to take but not so now. Hope you find a solution for your problems.

Malaika

[Hidden in reply to Malaika]

Hi Malaika, thanks for posting. yes i can appreciate now im on a low dose , im pleased to hear you are niw settled on interferon and platelts good, all the best Holly

[rjw1]

hi holly

I'm on 2x 500mg of HU everyday...it has really killed my appetite so now have to force myself to eat....been on this dose for 6 weeks just hope it a temporary thing.

I too get a sore tum but not every day.

Hope you had good Xmas....and all the best for 2017.

best wishes

Richard

[stevenjust]

Hello Chrissie,

I take 1500 a day (3 tabs) mon-fri and 2000 (4 tabs) Sat Sun. I do get side effects, esp mouth ulcers and feeling sick, also hair thinning. I do ask my consultant each time I go if I can reduce the amount which he did once for me slightly but then my platelets started rising again so he won't now. I've just had to put up with the side effects and carry on best I can. Most weeks I'm fine but then I can have a time where I'm just wiped out. I think your dose is quite high compared to others but if you're new to the drugs then your body will need to get used to them.

Good luck.

Justin.x

[MichaelS]

Hello Holly and everyone else. Happier and a healthier New Year! Just to say to Holly, that if you have acid indigestion and feeling sick when passing cooked food venues etc, then all you might need is a daily tablet of Omeprazole or some similar anti acid tablet, basically anything ending in 'zole! This did the trick for me and the increase of acid was due to the blood rather than the Hydroxy. At times I was on 3 alternating with 2 tablets per day and other varying doses, as and when necessary, to control the bloods. I was on Hydroxy for about 30 years, but now on Ruxolitinib.

Best wishes from MIchael

[Hidden]

Hiya Michael, hope alls well with you , thank you yes when i saw Gp after christmas re my tum, i mentioned i burp alot( im already taking Lansoprazole 15 mg been on this dose now a good few years mainly because i am taking aprin) so Now i been told to take 30mg for 2 weeks , im noticing an improvement all ready regarding i indigestion, its not so much heartburn , yes i remember you posting that you were on HU for 30 years thats amazing time to be on it , . hope you had good christmas and kept bug free so to speak . Happy new year to you and yours Holly

[MichaelS]

I was skiing in Austria, but I only managed 2 and a half days of skiing, mainly because I had about a month of flu like cold and horrible cough before I went on the holiday. About a week before the hoiday I had a trip to the doctor and he gave me antibiotics which seemed to clear things up. Anyway it was a nice break away and not having to cook or wash up after the meal. Best wishes from Michael