Esophagitis keeping em from AP… Please help with advice…

[mommaof2princesses]

Hi

I have been taking 50 mg mino MWF  since Feb (I am sensitive towards it which is why my AP dr has me pulsing a low dose).

I developed esophagitis last month. It has been absolutely horrible. The GI that I saw told me to stop the Mino and thought that was the culprit. I have been off the mino about a month and feel myself worsening.

Any advice?? Please and thank you 😉

[mommaof2princesses]

Oh yea, and the GI also said that I don't have SD because its incredibly rare and that my positive SCL 70 is just barely positive and means nothing 😯 I told him about the SD becuase I wanted to be checked out by him to make sure tha this isn't just from the SD itself, he is convinced its the Mino and that  I shouldn't be on it…:angry:

[Lynne G.SD]

Hi Mom;
     This all sounds so familiar.If the mino was the problem it would have stopped within a week.I once made the mistake of taking my mino and then laying down 15 minutes later.OH LA LA,la la   my throat burned for a whole week.
     Have you tried Tums or something similar? If that does not help you will probably need a prescription for something stronger.I solved the problem by taking digestive enzymes as I had slow mitility and that also solved the gerd problem.Stomack troubles are usually part of SD , Makes morning sickness feel good!

[mommaof2princesses]

Hi Lynne G

Thanks for your advice. I hope that you are well! I stopped taking the mino and my GI started me on Prilosec for 2 weeks. As soon as I stopped the mino the burning wasn't nearly as bad. Although it also wasnt completely eliminated with the Prilosec either. A week or two ago I tried the mino again to see how I did and it burned horribly again.

I asked the GI if it was the Mino or if it could just be the SD and that is when he wen off on hiswhole schpiel that I didn't have scleroderma bla bla bla… (Glad I wasted THAT copay…) he said it was the mino. My question is why when I have been taking it since Feb would that have just developed 3 months later… does it take that long for esophagitis to start?

I used to take digestive enzymes (that had hydroclhloric acid). My naturopath told me that reflux is a sign of too little stomach acid so I used to take them. I haven' t taken them in awhile I should try them again. I am just scared of what the hyrdochloric acid will do to my already sensitive esophagas. My Naturopath told me that sometimes the enzymes can cause it too…

I am confused and scared becasue I can feel some SD symptoms owrsening and starting now tat I have been off of the mino but I am terrified to go back onto it becuase I do not want to wear a hole in my esophagas.

By the way I agree with you…morning sickness was WAY more tolerable 😉

[mommaof2princesses]

I wonder if I got on a prescription acid reducer if it would help. I don't understand how the mino causes esophagitis, oes it promote extra stomach acid, or is it the pill itself?

[Parisa]

Do you take it with food?  If not, you might consider doing that.

As you making sure you are upright for at least an hour afterward???

[richie]

Hi

If reflux is a sign of too little stomach acid –then the world is really upside down –to any person with SD who has reflux -that is a sign of the sophageal sphincter being over grown with collagen making it not working properly –result reflux —Adding hydrochloric acid just aggravates the situation –any doctor on his or her game would definitely prescibe a product that reduces stomach acid —It sure looks lijke your esophagitis is the result of too much stomach acid —Some of the advice you have received is really questionable and shows a lack of knowledge into problems associated with SD —If minocin is taken  in ther capsule whole with ample amounts of water and not laying down for at least an hour –it is virtually impossible that it would irritate your esophagus —

richie

[Maz]

[user=944]mommaof2princesses[/user] wrote:

I wonder if I got on a prescription acid reducer if it would help. I don't understand how the mino causes esophagitis, oes it promote extra stomach acid, or is it the pill itself?

Hi Momma,

Esophagitis can be a side-effect of all the tetracyclines, especially in cases where there is inadequacy of the lower esophageal sphincter (aka LES – common in scleroderma due to build-up of scar tissue) or where there is a H Pylori infection.  

http://cat.inist.fr/?aModele=afficheN&cpsidt=14138185

It can also be the result of reflux in general. I think you mentioned taking your mino with several glasses of water. One glass should get it down, but if you're prone to reflux, then too much water in the stomach could be schlopping it all back up into your esophagus, too.

A stuck capsule in the esophagus (before even reaching the stomach) can cause severe esophagitis, so I would think it is the drug itself that can cause this burning. The only way to know if it's just mino that is causing this is to try doxy or tetracycline for a while to see if the same thing is happening. My best layman's guess is that taking mino has revealed an underlying, silent reflux problem that might otherwise have gone undetected. The tetras can cause nausea initially until the body adjusts, but you'd been on mino for while, so I would personally look into whether or not it was a sphincter problem, H pylori or something like gall bladder disease that might be causing the reflux. Sometimes just being constipated can cause backup, too.

Some sclero patients have shared that they also take a proton-pump inhibitor (like Protonix) while on mino….Richie might be a good person to ask about this, as he takes one. A heads up…if taking Tums or anything containing calcium, magnesium to settle the stomach, be sure to take this well away from the tetras, because they bind to one another in the gut and render the antibiotic useless.

Sorry to hear you're having these probs, Momma. You might want to try eating a light snack with your dose, as Kim wisely suggested, avoiding larger meals that may cause reflux. Also, just washing the mino down with just a single glass of water and being sure to remain upright for a good two hours after your dose. Mino was developed especially for kids with acne and designed to be taken with food, if necessary. It's generally not a good idea to eat huge meals or anything containing minerals (like dairy that will reduce effectiveness), though, to avoid all the probs above. If this doesn't work, then trialing a different tetra and testing for H Pylori might be worthwhile?

Hope you figure this out soon!

Peace, Maz

 

[Lynne G.SD]

I had acid reflux but it was not due to the sphincter .Doc scoped me and said all was well there.I had slow motility , the food was not passing down fast enough and was basically putrifying in my stomack.Digestive enzymes fixed the problem in no time.
     You have to find out what is causing the problem and treat appropriately.I took my mino with a bit of food.If you eat a meal and take it at the same time you will lose about 15% of it's activity which was just fine with me as I did not need 100%.I did much,much better on 100mg every other day.Everyone is different so you have to try to figure out what works best for you.My doctor had me on every possible dosage and antibiotic until we found the right combo for me.Strange as it sounds,200mg a day did didly squat for me and I spent a lot of time crying on Richie's and  A Friend's shoulders for a few years until she sorted things out.

[Rosey UK]

Hi

I just want to say I have a really poor digestion I have difficulty swallowing, I have acid reflux, esophagus spasms (my food can get grabbed when going down) this is very painful and can last a couple of days (not nice at all). I was taking doxy capsules and for over a year opening them and mixing in water (nasty taste) and not a good idea as they have to enter the stomach, one day they were smaller in size so I got brave and swallowed one (very brave!) I panicked a little at first but eventually got good at it. One day it creased me I was in agony after that I made sure that if I started to feel any discomfort I would eat something and it does the trick every time. I take proton pump inhibitors I have to and I too are on minocycline now with lupus and I know it could exacerbate the symptoms, so I will hope it doesn't happen. But I think you had the prob because the capsule needs alittle help to get down.

Good Luck

Rosemary

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