Query

[Simris]

Hi everyone,I've not posted on here for wee while but would like to ask question about meds I was prescribed few weeks ago.

It's xromi oral hydroxycarbomide and I was wondering if anyone in the group has used this medication and how they found it.

Any replies much appreciated

Regsrds

Phyllis x

PS I should've said in earlier, I've been on hydroxy (tablet form) 5 years, I have ETjak2. I developed very sore mouth ulcers few weeks ago and haemo decided to change me to xromi, almost immediately I felt very unwell and few days later ended up in hospital for a week, I've not been diagnosed with colitis and still not fully recovered, I just wondered if anyone else on here has had such an experience??????

[Cat1001954]

hi Iv been on oral hydroxycabamide for 2 years at first I felt nauseous but I just had ginger biscuits to help me or a drop of ginger ale. I’m not going to sugar coat Iv had mouth sores but they have got less as time goes by x good luck xx

[Simris in reply to Cat1001954]

Thanks x

[Swede]

Hi, I have been taking Hydroxycarbamide since 2008. I cannot say that any problem I have had is related to this medication, so I can't help you there,

[hunter5582]

Xromi was just recently approved in the USA for use in children with sickle cell disease. There is no approval for adult dosing. I doubt that there are many with any experience with it here.

I was refractory to and intolerant of hydroxyurea. It caused large oral ulcers, canker sores, leukoplakia (tongue turned solid white), thrush, and constipation. Unfortunately, oral and GI issues are an intrinsic risk of hydroxycarbamide. It sounds like you had a particularly bad reaction to the liquid form of hydroxy. Very sorry to hear that you had this experience.

It sounds like you may be hydroxycarbamide intolerant. Some of us do experience this. Fortunately, there are other options. Pegasys is another first-line treatment for ET. Unfortunately, there is currently a world-wide shortage of Pegasys. Perhaps in a pinch Besremi would be an option. Although it is not currently approved for ET, it is in clinical trials for this purpose. Likewise with Jakafi, which some have used off-label for ET. Another option is Anagrelide, which is approved for ET but is considered second-line due to its side effect profile.

It sounds like you will need to review all of your treatment options, ideally with a MPN Specialist. Wishing you success finding a viable plan as soon as possible.

[EPguy]

According to drugs.com "Hydroxyurea (the pill form) has been used to reduce the frequency of painful crises in adults with sickle cell anemia since the 1980s, and it was formally approved by the FDA for use in adults in 1998, and children in 2017."

This is the USFDA label for the liquid form XROMI:

accessdata.fda.gov/drugsatf...

It suggests relatively high doses, (for sickle cell as Hunter notes) weight dependent. But this is for children. Are you on the same dose as before? This could be one reason for a stronger reaction.

--

This label has a black box warning for malignancies , the most severe type of warning. This leukemia risk remains uncertain as discussed in old posts. Regular HU does not have a black box:

accessdata.fda.gov/drugsatf...

It's not clear why the black box difference as other info is similar. Possibly from the higher doses relative to a child's weight.

[Bluetop]

Hi, Sorry, no experience of xromi. I have been on hydroxy for 8 years and generally faired well.