abdominal pain at night

[Kizzy03]

hi,

Im currently on Hydroxycarbamide I take 2 capsules every night at 10.30pm I’ve been totally fine for the couple of months or so I’ve bee on them. But just this last week I’ve been having strange abdominal pains after sleeping for a few hours.

I’m wondering if anyone else experienced pain at the sides of the abdominal, just like you’ve pulled muscles internally or like your bladder is full!? This has been happening to me for the last 4 nights at about 3/4am and gets better if I get up and move or I’ve even taken a paracetamol. It’s strange to describe as it moves around a bit and I have nothing during the day!?

I have been worried as I’ve just been back 2 weeks from holiday on a long hall flight

I’m thinking should I try eating earlier in the evening and also taking the Hydroxycarbamide earlier too as this might help !?

I’ve been told my GP next appointment by phone is not till 31st August, unless I call up at 8am every day to see if there are any cancellations!! I’ve also lest a voice message with my MPN specialist nurse.

kiz x

[Rem31]

I’ve not had any abdominal pain that you describe but while waiting for a GP appointment or nurse call back why not try taking it earlier to see if it makes a difference.

On my 2 capsule days I take one in the morning near breakfast time and the other around a mealtime in the evening but never late. It’s just what suits me.

[Kizzy03 in reply to Rem31]

Thank you Rem31 I’m thinking of trying this and hopefully it works better for me too, if this is the cause. Thank you 🙏

[hunter5582]

There are a number of reasons why someone experiences abdominal pain. Hydroxycarbamide adverse effect is one of them but we would have no way to know if that is the case for you. If this is a HC adverse effect, it is something to review with the MPN Specialist. Most GPs would not be familiar with MPNs, their treatment, or medication adverse effects. However, your GP would be very helpful if the issue is due to something else.

Rem31 makes a good suggestion. You can try changing the timing of your dose and/or split the dose into two. It may be that 1000mg right before bed is just not going to work for you (assuming the HU is the issue).

Do please let us know how things turn out and what you learn.

[Kizzy03 in reply to hunter5582]

Thank you Hunter5582 I will try this tonight. I’ll start by taking the HC earlier as well as eating earlier and see if this helps. It present I’m about to have my bloods done next Friday and a call from my Heamatology Specialist Nurse the following Wednesday and she did advise I may need to take more HC per day as they would like my platelets about 400 or under ( they are still around 553) So! I think your right, maybe I should take one in the morning and one at night, I’ll keep you posted as to how things go.

Kiz x

[ciye in reply to Kizzy03]

Do you see an mpn specialist, a lot of them are happy with counts of below 1000, depending on personal health. Haemotologists seem intend on counts of 400 regardless of effects of meds.

[Kizzy03 in reply to ciye]

Hi, I only see the haematologist at the hospital, bout they say I’m now on HC because I’m over 60!?

[ciye in reply to Kizzy03]

Same here, though I am 61. Can't really see why if there are no risks why age should matter.

[ritaandscooter1 in reply to Kizzy03]

Hi Kizzy! My MPN specialist out of Mayo Rochester is one of the few specialist's who doesn't go by chronological age. I am 61 years old, am considered low risk for clots/strokes, numbers have been stable for years (don't change much) am very physically fit and have no other health concerns. He has me on 2 aspirin a day since turning 60. Hematologist's have to suggest that you go on cyroductive treatment because of medical guidelines and the risk of liability. My hematologist had to get a letter from my MPN specialist so he could be cleared of liability. My hematologist wanted to put me on HU the day after turning 60!! I refuse to go on that drug because it predisposes you to skin cancer which runs in my family. No thank-you...I live in Arizona in the winter and love the sun with sunscreen on of course. Try to find a MPN specialist who looks at your overall health, risks, and you as an individual. We are all different in how this disease effects us. I just had excellent results on a BMB. No progression after over 20 years on aspirin only.

👍 Best to you!! Kerry

[Mostew in reply to Kizzy03]

Do think about and discuss with heamotologist the need to take more HYDROXY. If you are happy with how it’s going on dose you are on and don’t have worrying symptoms . Perhaps you are ok continuing as you are.As others have said many say under 600 is fine.

It’s your body , your choice …..

Glad you had no pain this morning.

[Kizzy03 in reply to hunter5582]

Well!! I took the HC about 7.30pm last night and also ate dinner earlier. So far so good, I didn’t wake with the pains!! So, let’s hope this is my problem solved 🤞🤞

[RCBr]

Usually in the UK the receptionist would suggest ringing at 8am to get in quick enough to have a triage telephone call with the GP...and would escalate this to a same day urgent appt if they felt that was required...may be worth a try x

[Kizzy03 in reply to RCBr]

Hi, sorry forgot to mention they did say this too. It’s just I’ve never really been to my GP for years it took me by surprise how it works!! Also by the way I took my HC a few hours earlier last night and I had no pains !!! So hopefully this will continue 👍😁

[NegritOcho]

I’ve always taken HU with food. This helped ease gastro discomfort and reduced the appetite suppression that’s common with the drug.