hydroxyurea and lactose intolerance

[souplover]

Hi everyone,

At the ripe old age of 73, I suddenly seem to have developed lactose intolerance. I'm wondering whether it's connected to the hydroxyurea.

How about the rest of you? Are you having more stomach problems or lactose intolerance too?

[hunter5582]

GI issues are a common adverse effect associated with HU. This might include lactose intolerance as reflected in this reference. ehealthme.com/ds/hydroxyure...

HU did not affect me in this way, but did cause constipation due to compromise of the intestinal endothelium. There is evidence that the anti-bacterial quality of HU could affect the microbiome, but I do no know that this is well established. Seems likely to be something that does not impact everyone the same way.

Definitely let your care team know about his change. Hope you get it all sorted out ASAP.

[souplover in reply to hunter5582]

thank you!

[william-Indo in reply to hunter5582]

Take 2 big glass of warm water every morning and wait for at least 45 minutes before breakfast.It will solve your constipation.

Other way is taking 1 tsp sodium bicarbonat disolve in 1 glass warm water every morning

[hunter5582]

Thanks for the suggestion. Discontinuing the hydroxyurea solve the problem for me. While on it I had to use Miralax every day, occasionally drinking a cup of Senna tea. For a time I was on another med, Diltiazem, that compounded the problem immensely. I had to take Miralax, Docusate, and Senna every day for 6 weeks (under doctors instructions). I ended up having a heart surgery that let me do away with the Diltiazem. Thank goodness! It did take several months for the effects of the HU to mostly resolve. These days I take over 1000mg of magnesium/day to treat Mg-deficiency and to help control silent migraines with visual aura/palinopsia. I do not think I could be constipated if I tried to be! 😏

[Jsb45]

Soup lover, I find if I take it at night I tend to dream more. But, that I stay more regular doing it that way. I was taking 5 days at 500 and then 2 nights at 1,000. That caused some minor bowel upsets. Since changing to night time consistently I haven't noticed as much of an issue. I also take a daily, most days, a probiotic supplement.

Good luck

[catkinspolymer]

I have been taking HU since 1996 . No serious side effects such as lactose intolerance Have now got some diverticulitus but could caused by red wine and good living . Do get some sun damage to my ears. I have to state that HU has allowed me a pretty normal life . Hope this helps yurs Town Crier

[BloodZero]

I get stomach problems if I take it on empty stomach. So now I always take them mid meal to line the stomach.

[Bippers]

I took Hydroxuria from 2004 to 2012. ET caused high platelet count. Platelets came down to normal levels and my oncologist took me off the drug. My main side effect was I developed a peanut allergy. It took me several anaphylactic episodes before I realized what was happening. After stopping Hydroxuria, I was slowly able to eat nuts again. It took a year or two for the nut allergy to go away.

I have no lactose intolerance issues, but I have recently switched to unsweetened almond milk. Didn’t think I’d like it but I do.

I hope all is well with you and wish you the best.

Bippers

[Assoonas in reply to Bippers]

Hey Bippers I was just wondering if you went onto another drug after HU or has your platelet count remained normal with no medication?

[Bippers in reply to Assoonas]

Hi Assoonas,I took a baby aspirin for several years. My platelets have remained in normal range. My RBC count and hemoglobin were low but I didn’t feel anemic.

In 2018 I had a bout with cancer on the back of my tongue. Two surgeries, chemo, radiation and 12 transfusions later, my platelets have still been normal. My RBC count and hemoglobin are a bit lower than before and I feel a bit anemic. But I lift weights and walk on a treadmill weekdays, and relax on weekends. My oncologist thinks I have pernicious B12 deficiency where B12 doesn’t get passed into the bloodstream from my stomach. In August this year I began taking a fast dissolve 5000mcg B12 under my tongue which passes the B12 directly into my bloodstream. Within a week I seemed to have more energy and could take deeper breaths. My last oncologist lab work in October showed a couple point improvement in both RBC and hemoglobin. So, my fingers are crossed that I continue feeling better and blood counts keep improving.

Take care….Bippers

[souplover]

Thanks, everyone! I can see that I'm not the only one who may have more intestinal problems due to hydroxyurea. Looking online, I see that chemo of various kinds affects the gut microbiome, which can lead to lactose intolerance.

But as one of you commented, hydroxyurea probably has enabled me to lead a normal life, so I'll just deal with it!

[Wyebird]

No Hydroxicarbomide didn’t make me lactose intolerant. I was on it for 6 years. Im on Peg now .

[Diamond-kitty]

I have lactose problems and they were exasperated with hu. Better now I’m off it. Did mention to haemo she looked puzzled. Not their specialist subject I’m afraid

[souplover in reply to Diamond-kitty]

Hello, I had the same experience with my hematologist. I think she thought I was being a hypochondriac, but unfortunately the lactose intolerance is very real and I am thinking it's from the hydroxyurea. No, they don't seem so clued in to symptoms. They're more focused on the numbers. As long as the numbers are good, they're kind of like, what's your problem?