Horrendous stomach pain with hydroxycarbamide - MPN Voice

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Horrendous stomach pain with hydroxycarbamide

PhilReade profile image
5 Replies

Hi everyone has anyone on hydroxycarbamide 1500 mg daily had stomach problems? I was at a gastroenterologist yesterday and told may have Diverticulitis possibly through the hydroxycarbamide! I’m in this morning for a scan and next week a camera

I had blood tests yesterday quiet worrying as my haematologist is in keen to change my chemotherapy as he says there well controlled at between 427 -500

I’ve been on hydroxycarbamide since August 2015 after my splenectomy

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PhilReade profile image
PhilReade
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5 Replies
mhos61 profile image
mhos61

Sorry to hear this Phil.

It’s a bit of a dilemma you find yourself in really. It would be a shame to stop the hydrea if it’s not causing your stomach issues. I also take hydrea, but I don’t have any stomach issues. I hope someone else can be more helpful.

Do you take any stomach protection, such as lansoprazole?

PhilReade profile image
PhilReade in reply tomhos61

Hi thanks for your reply I take pantroprazole 40 mg daily I’ve just had my scan today I’m having a colonoscopy next week

Thanks

Phil

Bobthecob profile image
Bobthecob

Hi there, sorry to read of your discomfort. I have ET jak 2 and take 2 500 mg daily of H ydroxycarbamide. Some years ago, I suffered with stomach pains, my haematologist said side effects of the drug should be expected, the pain intensified and was really uncomfortable. My haematologist said the stomach pain wad not due to Hydroxycarbamide and to visit my GP. My Gp could not find a reason for it but questioned could it be the medication. I eventually became dehydrated and was hospitalised, my haematologist agreed to a drugs rest and sure enough the stomach pains stopped. My platelets rose and I had visual disturbances and symptoms associated with ET. I was weaned back onto the drug but on a lower dose and take tablets to protect my stomach. I read your post with interest, and I hope you find answers soon it sounds as though you are having thorough investigations. :)

jointpain profile image
jointpain

Your post is interesting, to me and my wife. My wife has been on omeprazole 20mg a day for a year now, as well as 500mg hydroxy every other day and 1500mg Anagrelide each day. She doesn't have any pain or discomfort, though has had around nine GI bleeds since March, had endoscopies, colonoscopy, camera pill to find out where the blood is coming from. Latest view from the gastroenterologist is she is oozing blood from erosive gastritis within the stomach and possibly varices in the oesophagus though these are graded as grade 1 and have been banded.

In our opinion we think the erosive gastritis is the reason and the chemo drugs are to blame, though we wonder what the alternative could be?

Personally I wouldn't think you diverticulitis could be caused be Hydroxy, more likely the antacid is causing poor digestion and malabsorption within your whole gut, which inturn may cause problems in your lower colon. Changes to your diet to include more fibre and real yoghurt along with nuts, fruit, dried fruits, should help. I was diagnosed with diverticulitis 30 years ago, but during a colonoscopy a year ago I was asking the camera driver about it and I now am cured, all due to a different diet (and extra B12)!

Wishing you luck in your colonoscopy.

hunter5582 profile image
hunter5582

Hydroxycarbamide can compromise your intestinal endothelium, causing problems like constipation. This is a known adverse effect. Bearing in mind that it is a cytostatic med (disrupts DNA activity) it makes sense it would effect something other than hematopoiesis. Whether HU is the culprit in your situation may be difficult to tell. The compromise to the intestinal endothelium is microcellular - not something that can be seen on a scope according to the GI doc I see.

Regarding the HU, per the NIH it is a "highly toxic drug with a low therapeutic index." While some people tolerate and benefit from it, not everyone can. There are other options if you cannot tolerate the HU. There are also changes in the thinking about the value of trying to attain a "normal" level of platelets in the absence of symptoms that are actually a problem. Sometimes the cure is worse than the disease.

Hope you get it all sorted out ASAP.

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