Will I get used to it eventually ?
my first 30 days.on 500mg of HU.Had increased sh... - MPN Voice
my first 30 days.on 500mg of HU.Had increased shortness of breath. Took break. Restarted. Have brain fog & fatigue.
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Wewo01
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It took me two weeks to get used to it (brain fog) and then fine. I’ve been on it for three years now with no side effects.
Good luck. Suzy
I too got used to it but don't remember how long it took. Brain fog disappeared completely but still get breathless and mouth ulcers from time to time ….. all very Good luck!
Unfortunately for me the side affects continued. It also reduced my red and white cells. So had to come off it. But everyone is different
It took about 3 months for the initial side effects - extreme fatigue, mouth ulcers and dry skin to disappear and for it to actually start working. My haem was 'talking about' other options as my bloods didn't budge in those first 3 months.
I'm now pleased we stuck with it as I have no side effects and my bloods are fine.
Good luck. Kari
Make sure you drink plenty of water -this seemed to help me.
I’ve been on 500mg since February different times... every day for 1 month. Counts came down so stopped for 2 months. Counts went back up so tried 3 times a week now we’re trying 2 times a week. All to see if counts stay down and side effects go away. Still have extreme fatigue and brain fog. Can’t say about the continued shortness of breathe as I had Covid in September and that causes breathing problems. Sore mouth and now having some body stiffness and soreness. I guess it’s a matter of trial and error and eliminating other health problems. Can’t blame everything on HU. Hope you find the right dosage.
I should also say my taste changed. Food doesn’t smell or taste as good and I’ve lost my appetite.
Well that’s a bummer! I have noticed that there have been a few things that now taste BAD to me that didn’t before HU.
I've been on 500 mg HU for 2 years with a couple of breaks. Didn't have too many side effects at first but over last few months , fatigue and short of breath when walking and very bad itching skin mainly on legs . My left ankle and foot are always swollen but don't know if that's the HU or not. Hope you settle down ok soon. Best wishes Fran
Wewo01, HU causes lost of vital nutrients one being magnesium. Insufficient magnesium means thiamine and vitamin D do not become bioactive plus a multitude of other processes like calcium management are compromised. Study these links and become familiar with vitamins and minerals. Dr Atkin's Vita-Nutrient Solutions book available on line is a great resource for you.
wa.kaiserpermanente.org/kba...
Read the comment section of this link for B1 supplement info:
Some do and some don't. We are each unique in how we respond. As you heard from others, some tolerate HU with no/few signs of toxicity. Others, like myself, are unable to tolerate HU even at very low doses. The good news is that if you cannot tolerate HU, there are other options.
The best advice I can offer is to be sure to cult with a MPN Specialist about your treatment options. Most hematologist do not have the requisite experience with MPNs to provide optimal individualized care. Here is a list in case you have not already seen it mpnforum.com/list-hem./ .
All the best.
Well I guess MPN Specialists may have a cult, but the word was suppose to be consult. Gotta love that spell check.
Have you inadvertently moved us on from being in an exclusive club to cult status?! 😂
Well MPN Specialists can be a quirky bunch, God love 'em. Sometimes typos are fun! 😅
Thank you! I am pretty certain my hematologist has very little experience with MPN’s. She spent 5 minutes with me when she gave me my diagnosis and was very blasé about it.
Whoa! Hold the boat! REALLY!! Five minutes to deliver a MPN diagnosis and start you on chemotherapy that can have very significant side effects? That is not adequate care. Please be sure to find another provider. That is unacceptable. See the MPN expert list above. It is the best possible thing you could do for yourself.
Unacceptable!!!
I had nearly 40 mins with my haematologist and a macmillan nurse, specialist booklet and extra printed info to take with me re medication options /impacts
Find a new haematologist....
Sorry you have had this experience 🙁
Hi, W, I had exactly the same experience, thank god this community exists!Hunter is all about educating yourself (and is a wealth of information) and it may seem over your head or tedious but it’s really not. Little increments of knowledge add up and can you give valuable insights into ‘your own’ particular risks to try and manage.
Wishing you all the best, Jaqi
Lol! Thank you for your advice!
I too got used to it but sometimes I had badly Mouth ulcers And dry skin. Make sure to drink plenty of water.
Last time I mentioned the breathlessness I was told it was due to wedge resection of lung, which was done in Aug the breathlessness has been an issue for a long time as has the fatigue. Next time I speak to her it will probably be due to a more recent lower lung lobectomy it's so frustrating I know how long I have problems. Anyone in the UK see a specialist through the nhs.
On hydroxycarbamide since March, initially 500mg, then a further 500mg on 3 days of the week when my count wasn't lowering enough after 2 months.
Now my platelets are at an acceptable level, and they are keeping me on this dose.
I found I was very nauseous and tired at first. Now I have don't feel nauseous anymore but have no appetite. I still get exhausted, but am in constant pain due to waiting for a hip replacement, so won't know til that is done whether its that, the hydroxycarbamide, or both.
Haven't had any other notable side effects, but have no longer got the ET symptom of nightsweats and much less bone pain
Let us know how it goes, there are lots of suggestions people on here can give if you struggle, and at the very least, you have our sympathy 🙂
