I had my check up today and my heamotologist has advised me to increase my HU to 1000 mg a day as my platelet count has been around 575 for 10 months.
I initially started on 500mg a day and then 500mg and 1000 mg alternate days Without much change to the platelet count
I have to go back weekly to make sure it doesn't affect my other counts . She did say that infection risk is higher but having a stroke is the more worrying .
I was wondering what dosage some of you are on and if it's affected you in any way as regards infections or side effects
She said I could leave it if I wasn't keen and go back in 4 weeks but her advice was to increase it
Also I was wondering how much the highest dose is that is safe to take and when it's time to try something else , perhaps Maz would know the answer
Thankyou and hope you are all well
Jk
17 Replies
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I get really confused why is 575 bad? That's not that high compared to many others including me.. how do you feel?
Hi my consultant told me that 400 was a normal good platelet count, they worry if it gets over that. Over 60 puts you in a higher risk category and that a daily asprin should be enough to keep you going until then, that was her opinion.
I think age comes into it. I was taking 500 mg 6 days per week and 6 weeks ago my platelet count had increased from 400 to 500 so they increased my dose to 7 days per week and on Monday I was back down to a count of 400 . I am 62.
Sorry, I don't know what the highest safe dose is. I am very lucky that I don't really get any side effects.
I am 61 and my heamotologist said as I'm still relatively young ( although I thought over 60 was a higher risk ) she would much prefer it if I was around the 400 level I think different heamotologists have different views on treatment which I find confusing too ......I feel ok apart from the dreaded fatigue suffered by so many .
Apparently I'm low risk at 54 with a platelet count around 900. They don't plan to do anything for me until im 60 as far as I can see, unless I have a stroke or heart attack. I have et and rely on aspirin to hopefully get me to 60.
Hi cono61 ,I'm 46 I have et, I'm high risk , I had a stroke 3 years ago platelet count around 500 mark.Previously I was just on asprin.I don't understand Why we have to wait for a stroke ...and then get treatment.
Hi, I may not be much help as I don't have a clear diagnosis, "possible CMML/MPN non-classified" is the closest we've got, Jak2 positive. I have been on doses varying from 500 daily to 2000 daily. My platelets at one time shot up over 2000 and that's when I took 2000 (4 capsules per day) to get them down, which it did. Currently on 1500 for two days per week and 1000 for five days per week which my consultant says is quite high but it's holding my platelets around the 400 mark which is good. I've been on it about 2.5 years with no real problems, I had some hair thinning (which I didn't like!) and get some mild nausea after taking it so I take it last thing at night hoping to sleep through the nausea. Otherwise I feel Ok apart from fatigue by late afternoon, so evenings are a write-off. I Think the risk of infection is only higher if the Hydroxy drives your white count too low, but I'm no expert. I was "diagnosed" at 65, currently 68 and my consultant says Hydroxy is the best drug for 60+ if it works. I had weekly blood tests for 3 years and if they're offering that I would definitely go for it until the Hydroxy has you happily within normal range, you're not that far off. Hope this might help, good luck and best wishes, Frances.
Thankyou That is helpful sharing your experience with HU
It's a scary drug but seems so many cope very well and I'm happy that it's working for you . Positivity in coping with our et is sometimes hard but the people on this forum are very uplifting .
I am knocking on 50's door, and have PV, Jak2+. I started on HU just 6 mo after diagnosis (which was July 2007). It's been increased/decreased over the years. For the past 18 months or so I have been on 1500 HU x 4 days, 1000 x 3 days. I don't have any side effects besides fatigue. I also take 2 full strength aspirin a day- without it I suffer from Raynaud's and erythromelalgia. My platelets hover around 400, RBC's are low, WBC is good. I have not had any issues with infections, but I seem to skip over the common cold and go straight for bronchitis. My son gets married next Saturday, and I fear I won't be able to make it the whole day due to fatigue. I wear out so easily! Mornings are best for me....but of course the wedding isn't until 2. It'll be a long week next week, but I can do it!
Thanks for the reply Becky and glad to know you are doing well on the HU . Fatigue is a big problem for me too and strangely enough my niece is getting married the same day as your son .but not sure I will make the very long drive there . Hope the day goes well and the weather is kind to you . Best wishes to your son and his bride to be . Jk
Hi Maz can you plse tell me from your knowledge, what is the chance of HU effecting your Red and white cells? I work in a hospital and I don't like the fact that my immune system to be compromised. I am almost 65 and on aspirin. I have ET with CALR postive. Thanks Maz Lyn x
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