Hydroxycarbamide and Serum Bilirubin

[azaelea]

I am wondering if anyone else who is taking Hydroxycarbamide has a high Bilirubin reading. I have , what I think is too high which fluctuates within the 30’s and sometimes into 40’s/umolL Serum Bilirubin. I have queried this with Haematologist but she says it’s normal with patients taking Hydroxycarbamide. I do suffer an ache on right side of abdomen below the ribs which makes me think it could be from liver. Any thoughts please.

[Scottishterrier]

Hi azalea it is weird because that is my story many years ago I came back from holiday in the states in 1995 was the September I thought it was heartburn I had been swallowing gaviscon but never got better I have et jak2+ since 1994 I mentioned the feeling I had to my consultant I got a CT scan in the November I went through Christmas and new year in agony even breathing was sore so came to January I phoned GP and got a rude response saying it has been Christmas you no but attitude changed when I told her it was 1st November I got it done I was was to make an appointment for GP she told me I had a hepatic infarction and I was to see my consultant which I did and he said I had to medications to choose from one was Hu or interferon which I read about the bad side effects I asked about if I would lose my hair with it being a chemotherapy treatment and he said know I have been on it since 1995 and also with it being in Liver I see a gastrointestinal consultant apart from nausea I am still on them and I have no problems with blood counts i am sure if you're consultant had any problems with your counts he or she would talk to you or concerns they would change it but please tell your consultant about your concernsStay safe

Scottish terrier

[azaelea in reply to Scottishterrier]

Thanks for your reply Scottish Terrier. Oh dear, you have my sympathies when I read your profile on here. What sadness and worry you’ve gone through and still are losing your brother so tragically , his child’s problems and your Mum and Dad plus your own health problems ! From your name Scottish Terrier, do you come from Scotland by any chance. I was born and brought up in Glasgow and came to North Yorkshire when I got married 66 years ago. Best wishes it all works out right for you. Stay safe, Fran

[Scottishterrier in reply to azaelea]

Yes I am from Edinburgh I have had et jak2+ since 1994 but always have a positive outlook and also about five to six years before my dad took ill and was admitted to wgh and told mum to to tell the doctor that I suffer from et jak2+ they ran some tests and when they got the results they found out that he suffered from PV so that was was two members from same family both with mpn and thanks you for your kind message Fran anytime you need advice on HuDon't hesitate to get in touch is et you have

Stay safe

Scottish terrier

[hunter5582]

Elevated bilirubin is not common on HU, though it is known to occur. The elevation in bilirubin can happen for a number of reasons while on HU to treat a MPN. These include direct impact on liver function, indirect impact from elevated hemolysis (red cell breakdown), or the underlying MPN.

Monitoring the liver function enzymes and bilirubin is part of the protocol for anyone on HU due to its known risks. Some additional factors can help shed light on what is going on, including looking at the LFTs (ALT, AST, ALP) and underlying MPN factors such as lactate dehydrogenase (LDH), haptoglobin, and reticulocyte count may help to assess. This would be an issue to discuss with your MPN care team.

It is very reasonable to suspect that the elevation in bilirubin is an HU adverse effect, which seems to be what your hematologist is saying. If there is no other sign of liver problems, it might be that this is a minor issue, but I would not ignore it. A proper assessment of your status would be prudent.

When Besremi caused my LFTs to elevate 3x/ULN, I did not just ignore it. I consulted with my Integrative Medicine doctor who prescribed a Milk Thistle Extract (Silymarin). This supplement is used in Integrative Oncology as a liver protectant for people on chemotherapy. It worked for me, returning the LFTs to an acceptable level. Note that it is important to consult with a knowledgeable medical professional regarding the use of supplements. My MPN Specialist (great doc) was not aware of the use if Silymarin when LFTs are elevated. She certainly made note of how well I responded.

Suggest that you push for a more complete review of the elevation in bilirubin to ensure you understand what is going on. Based on the assessment, you can make an informed decision about your options.

[azaelea in reply to hunter5582]

Thank you for your information and advice Hunter which I was hoping you’d send. I will investigate further with the other readings and bring it up on my next phone consultation with Haematologist and request a proper assessment. Best wishes, Fran

[dogsandhorses]

I had that same pain when I was taking Hydroxyurea, and had it for 5 years. It was never diagnosed as anything, but was very real. I am on Jakafi now, and no longer have that pain.