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

Hughes Syndrome APS Forum

10,454 members10,648 posts

Mounjaro

MissPiggy005 profile image
5 Replies

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

Written by
MissPiggy005 profile image
MissPiggy005
To view profiles and participate in discussions please or .
Read more about...
5 Replies
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?

MaryF profile image
MaryFAdministrator in reply toKellyInTexas

A very good point. MaryF

GinaD profile image
GinaD

So sorry you are srill suffering from after effects. I hope your GI track returns to normal soon. All of our metabolisms differ. For me, weight loss comes with: 18 hour fasting equals loss of 1/2 pound per day. Of course, following this pattern for too many days in a row seems to result in short term memory issues, which go away when my fasting days end. So, my goal has become losing 1 1/2 pounds a week, which translates to 3 days of no breakfast followed by regular eating schedules the rest of the week. Slow, but seems to work. And I'm not suggesting this works for everyone! Our metabolisms are highly individualisti! And losing only 6 pounds per month is not particularly eye popping. But still... its something that works for me. Again, I hope your issues resolve soon!

MaryF profile image
MaryFAdministrator in reply toGinaD

What I found was that I could not lose 3.5 stones, until I had properly tested my Thyroid and that meant ordering my own tests which are far more detailed than the faulty half working TSH test routinely used in the UK, that and my B12 injections, started the shift, plus I eat low G.I/Mediterranean and gluten free, and do exercise of some sort every day alongside brain training. MaryF

GinaD profile image
GinaD in reply toMaryF

good for you!

Not what you're looking for?

You may also like...

First time posting.........

Hi I joined this forum many months ago and have found it very useful. However although nervous...
chelb29 profile image

One step forward two back

This year hasn’t started off great . First bad palpitations and breathlessness but all test came...
amy1808 profile image

Hydroxychloroquine

Reaching out for help advise, I have been having issues with some unexplained brain stuff for about...

no symptoms ???

hi guys. Haven’t posted for a while but was so shocked yesterday had to tell you. Been diagnosed...
diane1428 profile image

Plaquenil

I have been on plaquenil for about ten weeks now, although they have helped some of my symptom's my...
Jillymo profile image

Moderation team

See all
MaryF profile image
MaryFAdministrator
lupus-support1 profile image
lupus-support1Administrator
HollyHeski profile image
HollyHeskiAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.