Hydroxycarbomide

[jodary]

I am on HU for ET , have increased dose recently by one 500 so am on 8 a week. I have always taken it at night on advice received when starting it some 4 years ago. Since increasing I am waking up in the night with racing heart and anxiety like symptoms. But have noticed that dehydration symptoms are similar and am wondering if I’m becoming dehydrated because am asleep and not drinking water. Does anyone have any similar experience? What is the best time to take HU

[Scottishterrier]

Hi jodary I was told by my consultant to take them in morning I have been on them since 1999 and apart from nausea which I am now on domperidone I have had no problems why not ask consultant or GP to change to morning see if that works Stay safe

Scottish terrier

[Swede]

I have been on Hydroxycarbamide since 2008, but not had that problem. Of course I have been on different amount over the years, depending on the amount of platelets. Sometimes I take it in the morning and sometimes at night. So I can't really help you, but try to drink a fair bit of water during the whole day, so you are "watered" when/if you take it at night?

[hunter5582]

I do not think tachycardia or anxiety are a common adverse effect with HU. I am wondering if you may be experiencing some form of rigors, which is a known HU adverse effect.

Suggest that you treat this as an emergent issue. Unexplained tachycardia needs to be investigated promptly. I experienced tachycardia as a result of an electrical issue in the heart. The issue required surgery to resolve. It would be prudent to notify your hematologist right away in case this is some form of a HU adverse effect.

Note that tachycardia is too often misdiagnosed as anxiety in females. Suggest that reviewing the tachycardia with a cardiologist would be indicated. They may want you to wear a 1 or 2 week heart monitor, which I have done several times. The newer version of these monitors, with a single patch, are much more convenient to use.

Please let us know what you learn. Others will benefit from your experience and knowledge.

[jodary in reply to hunter5582]

Thank you Hunter, I think I may have misled you as I haven’t got tachycardia, my pulse is rarely over 95 and usually in the 70s.it does sometimes feel like it’s faster but isn’t. I am more inclined to think it’s my thyroid playing up again although I have been diagnosed with anxiety over the years. I am having it checked again this week I don’t know if HU can interact with levothyroxine ,in the same way as Inteferon does . I don’t think research has been done Sorry for misleading you

[harev in reply to jodary]

I had those same symptoms on HU. The symptoms were from HU because as soon as I went on Besremi they disappeared along with the headaches and extreme fatigue. I hope you get some relief it’s scary.

[jodary in reply to harev]

At last someone with the same lol. Got no sympathy from consultant who said 1 extra a week wouldn’t be to blame and it was ET giving me the symptoms so put dose up more. I need to look into seeing someone else as I am getting to really dislike her and I think the feeling is mutual in the way she is with me Thanks for replying

[Fairyglen in reply to jodary]

Yes some Consultants just want to push as many Hydroxy or else into us. Found the same with female (consultant?? Assistant) Got off to a bad start with her as was diagnosed with PV during our famous lockdowns, I couldn't understand her foreign accent from behind a mask) consequently I misunderstood my diagnosis, thought I had Haemacrotosis! plus the fact that I was initially treated via venesections which, later transferred on to Hydroxy × 500mg 7 days a week. Tgey were giving me nausea, couldn't stay awake, had hair loss in large bunches. I arranged appoint with the Consultant who decreased dose to 500mg 3 days per week. That was over a year ago & am still on the same dose. Do not stick with any Dr who may be rude or showing dislike to patients , look for another Haematologist to advise you. It took a junior House Officer in Haematology Dept to explain to me what my condition was. He wrote it down for me. The Consultant was unaware that I was let loose!! discharged from the Hospital without an information booklet on PV. He immediately got one for me, little info in it but at least I knew what was causing the blood clot in my lung & prior to that 6 mths earlier, I had a clot in my leg which I am also taking warfarin daily dose for prevention. Always make sure to bring pen &,jotter appointments, let them see you are noting their comments.

[hunter5582]

No apology needed. Racing heart sounded like tachycardia. I have not heard of any interaction between HU and levothyroxine and none shows up on the intersection checkers on ePocrates.com and Drugs.com.

I think we all have different experiences with the best time of day to take certain medications. it is true that many find it better to stay well hydrated with HU.

The fact that this started after the dose increase makes it reasonable to suspect the higher HU dose may be involved. Best to follow up with your MPN care team on that.

All the best.

[russkatt]

I’m always taking mine with my dinner. The most I ever took was seven per week. Never had any side effects.

[gardner99]

Hi jodary, I also have ET and I'm on HU x 6 grams a week. I have one am & pm Mon to Fri, and one one Sat & Sun nights. I haven't experienced the symptoms you describe, but I do drink about 3 litres of fluid a day. When I was on one a day I always took them at night to help avert the lethargy, but to be honest I don't feel any different whatever time I take them. Your symptoms could well be down to something else so best get checked out, even though as we know we all react differently to this drug Best of luck.

[Jennytheb]

hi I have been on this for 9 years plus and now have 3 500 doses daily. I always take with a meal and always drink lots of water. I have no symptoms.

I hope this helps, if you are at all concerned I wouldn’t hesitate to consult with GP or consultant, hope this helps and you have a smooth ride from here on

[Richinspirit]

Hi - my partner has been on it since 2009 - most he has ever taken was 21 tablets (500) per week, he is now down to just 6. Always takes them before bedtime and has never suffered the symptoms you describe - sounds like nocturnal anxiety to me but I am no doctor. Keeping hydrated throughout the day is absolute key with this drug. Good luck!

[Ipadlin]

Earlier this year, having always taken my HU with my evening meal I asked my consultant about changing this as I was going away and thought morning might be easier. He said there would be no problem and that I didn’t even need to make the change gradually . As it is, I’m still taking them in an evening. I only came across one restaurant that had a notice saying they’d charge for a second glass of water. They didn’t when I explained

!!!!

[Nerjalover]

I took it for 24 years and always took it first thing after my breakfast!

[OZland]

I used to take hydrea 1000mg per day for 5 days for 5 years (I am now on Pegasys interferon for 1.5 years) and found for me personally it was best to take in the morning, I also found dehydration symptoms so drank and still do a lot of water. I have not experienced anxiety….

[Sunbathing]

hi

I have ET too been on HU for a year I take 9 tablets a week 500 mon -fri and 1000 sat & Sun

I take every night before bed I’ve been ok but I do drink lots of water with them before bed and during the day

I’m up every 3 hours for a wee which is a pain but I’m always hydrated. You need to ensure you drink more this may help or if not speak with your consultant

[nightshadow]

I take it at night because it tends to cause drowsiness in me. I also wake up at night, but don't have a racing heart or anxiety. Does taking a glass of water relieve the symptoms?

[jodary in reply to nightshadow]

No not really when it happens. Last night it didn’t so fingers crossed

[Yoganana1]

Hi Jodary

I have just been increased once again to double dose at the weekend but the same thing has happened to me too.. I wake up with anxiety and racing heart, I was sure it was due to the Hydroxy but the consultant denied this. I still feel it is linked as it’s not something I have experienced normally

My dose was increased once before and it made me feel very unwell so went back to one pill a day now I have had to have raise it again 🤦🏼‍♀️

I hate taking the extra meds and my platelets are just over 500 so still not convinced I need double but it’s very hard to get anyone to discuss it with who has any knowledge of ET . Everything just seems to be on a tick sheet of how we should all be treated 🤷‍♀️

I have tried to change consultants but sadly it’s easier said than done these days now .. the waiting list seems to go on forever

I wish you all the very best

[jodary in reply to Yoganana1]

Although the majority of people on here seem to be ok it’s interesting that we have experienced this. I am going back to my previous dose to see what happens. I too want to change consultants but don’t know how to go about it . I already get the feeling that drs don’t like me for having my own opinion and am worried a new one would have been told about me before I even saw them . Thank you for replying x

[Innessant]

I have been on HU for two years and recently increased dose to 1000mg per day (2 tablets). I take every morning with food. No problems at all with HU which i think is underrated and it is the longest approved drug for MPN's.

[StigerP]

Hi jodary.

Have been taking Hydrox. for approx. 2 years. I was initially taking 500mg daily. This was increased after 4 months to 500mg Monday - Thursday, 1000mg Friday to Sunday, which has stabalised my bloods. I was advised from the start to take it the same time everyday, preferably in the morning, because of potential dehydration over night. In the morning I usually drink approx. 1 litre of water.

My side effects, if they are the result of the meds, are mainly aching joints. I have 3 mutations. One of which is JAK2. I have had 2 x "special" blood tests to assess the Allele Burden. The 2nd test showed a slight increase. If this continues to increase, the advice is to move on to Ibeferon. Which may have different side effects. Advice from Haemo is to stick with Hydrox.

Good Luck.

[Luvlyhubby]

Hi Jodary.My hubby always takes it about midnight (500g daily) with about a pint of water & fingers crossed 🤞 has been fine, also, drinks about another pint during the day. Fingers crossed 🤞 for you.

[JOL13]

Hi Jodary

Im on Hydrea, taken at night to avoid side effects - 10 x 500mg mon to Thurs one a day and Fri Sat Sun 2 x a day.

I have the same I can't sleep and am extremely dehydrated at night I wake up and have to rehydrate as my. tongue also feels dried out. I also get mouth ulcers and severe fatigue and a lot of pain.

I have been on Hydrea since last June platelets going down very slowly 497 at the moment.

Am having shoulder op imminently so trying to get down further.

Keep well we are here for you ! x