Lack of appetite and sour stomach - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Lack of appetite and sour stomach

Piscesdreamer profile image
6 Replies

Hello everyone,

I am currently going through something strange. I have periods where food is unappealing to me. When I try to eat, I just cannot do it.

Yesterday I was able to have a protein powder smoothie with almond milk, banana, strawberries, and blueberries. Then at lunch I was barely able to eat a string cheese. Then at dinner I was able to eat an ear of corn and had to force myself to eat half of a cheeseburger.

I have regular bowel movements, no fever, no fatigue.

I am going through menopause so I have hot flashes. I also have cold flashes.

Has anyone experienced these bouts?

I am triple positive, since 2018 I have been taking eliquis (prescribed by Mayo, and my specialists - I will be switched should I have a clotting event) hydroxychloroquine, aspirin, and vitamin D, and a probiotic.

I do have doctors appointments scheduled, but most doctors are not familiar with aps. I am looking for some direction as to what tests and specialists I should see.

Thank you!!!

♡irene

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6 Replies
KellyInTexas profile image
KellyInTexasAdministrator

Hi There,

A gastroenterologist would be a good starting place.

I have this from time to time.

I feel mr tummy acid becomes too low or too high.

Pepcid causes this for me actually… it’s a histamine blocker and is used for a MCAS stabilizer before ivig and rituximab infusions.

I quickly ditched the Pepcid.

I also don’t do well with Prilosec. ( nausea, diarrhea…)

As far as any APS connection- mine have been Emergency type ileis / gastroparesis . ( dire illness showing shut down bowels - air in the tops bowel loops and fluid in the bottom. ) it was clotting to small vessels that made the bowels contract.

Piscesdreamer profile image
Piscesdreamer in reply to KellyInTexas

Thank you Kelly! You are so helpful and valuable to all of us!

KellyInTexas profile image
KellyInTexasAdministrator in reply to Piscesdreamer

I am happy to lend my personal patient perspectives… with the hope they shed light 💡… they may or may not. Could be a different thing entirely….APS flares can cause tummy troubles.

FYI: if you are on Hydroxychloroquine- make sure your pharmacy hasn’t changed the manufacturer on you. That can sometimes cause troubles.

MaryF profile image
MaryFAdministrator

Sometimes as we age low stomach acid is a problem, I use cider vinegar before a main meal, diluted with water or in capsule form, however do check with your doctor. I know from my on experience and that of my children that your symptoms can also be related in some cases to B12 deficiency (Pernicious Anaemia), this can cause loss of appetite, bloating and nausea. I hope they get to the bottom of it. MaryF

Piscesdreamer profile image
Piscesdreamer in reply to MaryF

Thank you Mary ♡ I have an appointment with a gastroenterologist on Monday. Hope to get some answers I am also seeing a cardiologist on Friday. I am in a new area and have been establishing myself as a new patient with specialists. In the meantime a swollen lymph node has popped up in my right armpit so I have a breast MRI in 19 days unless I can get in sooner. Ugh.

MaryF profile image
MaryFAdministrator

Ok, well I am glad you are being investigated, keeping ringing, you may well get a cancellation, if you tell them you will take on short notice. MaryF

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