Mounjaro: I have Hughes syndrome... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Mounjaro

MissPiggy005 profile image
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I have Hughes syndrome, adequately controlled and Monitored by Professor Hunt from St Thomas’s hospital London.

I take Apixeban 5 mgs twice a day.

Early September this year I started the Mountjaro injection 2.5 mgs a week for four weeks as I needed to lose 28lbs in weight. I checked with my GP and there is no contraindication with Apixeban. I also reviewed this through a Google search. This was then prescribed by a reputable online doctor. This month I am on 7.5 mgs and have had side effects, although mentioned in the literature, have been truly debilitating and potentially dangerous for us with hypercoagulation.

The side effects of constipation for four days , diarrhoea and projectile vomiting were very severe over a 12 hour period with undigested food from more than 24 hours previously eaten. The fermented gas in increased belching most unpleasant, frequent and embarrassing. In addition the fatigue ( again well documented) is something we have to live with anyway. Dizziness accompanies it with spells many times a day.

The commercial pharmacy doctors told me to reduce the dose but for me this journey is over. My GP agrees with me.

Nobody knows how these drugs will treat their own bodies and there is no reversal. You can treat the symptoms but for me, although successful has been a price too big to pay. There has not been a day when I have not been reminded I have used it.

Please be careful my friends. Undoubtedly it works but the cost to your overall well being may be on balance, an experience you cannot avoid.

Good luck for those who use it and thrive!

Xxxx

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MissPiggy005
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KellyInTexas profile image
KellyInTexasAdministrator

Thank you for sharing, and I’m very sorry you suffered.

A question from the APS/ heme stand point I do have if you don’t mind me asking, was Professor Hunt asked her opinion/ given a chance to bless this drug for you?

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