Have any MG patients been on prilosec
 

New to board. Diagnosed with MG yesterday. I am researching supplements. Particularly B12 and Manganese. I have taken B12 subliminal under the tongue from time to time. I know that it is difficult for the body to absorb.
I have a hiatal hernia and have been taking Prilosec for probably 15 years. I know it has side effects when taken long term but my doctor says the benefits out weigh the risks. I suspect it affects the B12 absorption. Have any of you been on acid reducers for extended periods of time prior to MG.

I have been on them for about 15 years and have had mg for 13 years - no problems that I can identify related to the acid reducers. Would have a hard time without them. Good luck!

Hello Edwin, I am not aware of any adverse effects for MG, from Prilosec. It doesn't necessarily mean there hasn't been, but generally, I am not aware of any. As your doctor said, with many medications, MG has to take a back seat.

Nice to meet you...:)

I was on Nexium for years. I am not sure the effect it had on my MG since I have been on it so long. But it is magnesium based, so my doctor switched me to Pantoprazole Sod Dr Tabs 40MG which does not have magnesium. As you know, magnesium is a big no-no for MGers. I will let you know if I have any improvement.


kathie

Edwinlgreen, Welcome to the forum! I guess congrats are in order, sort of. ;) There's a lot to learn about MG. Because of where you live, stay the heck out of the heat and humidity! It can make MG progressively worse.

If you have any other questions, please ask! MG has a rather big learning curve, like knowing what drugs to avoid, so do read up on it. www.myasthenia.org or www.mdausa.org

Why did you go on acid blockers to begin with? How old were you? I frankly have to disagree that the benefits outweigh the risks. Recent studies are showing how dangerous those drugs can be on your overall health. Has anyone tested your B12 level?

The issue of acid reducers seems like a simple topic but it is actually quite complex.

First, we need stomach acid for many reasons. The main reason is to digest our food so that its nutrients can be properly absorbed in the small intestine. Without that happening, you can have many vitamin and mineral deficiencies.

Second, stomach acid is needed to fight off bad bacteria in our bodies. When you have any autoimmune disease, that becomes even more important. You can be prone to getting more infections without it (i.e., H Pylori).

Without enough stomach acid, several things happen:

1. Food doesn't digest properly and "dumps" into the small intestine.
2. You can have reactive hypoglycemia from the dumping, where you get hungry too soon after eating and can have "shake attacks" from blood sugar swings.
3. You can GET a hiatal hernia from not enough stomach acid due to the dumping (I have one due to that.).
4. You can have an increase in gas and bloating. If you eat a big meal, you can have abdominal pain and vomit before it dumps into the small intestine.
5. There's not a proper mix of solids and fluids in the large intestine.
6. Food can sit in the large intestine for longer.
7. Food putrefies in the large intestine, causing an increase in bad bacteria.
8. This entire process can lead to a leaky gut, which has been shown to leave a person more open for even more autoimmune problems. It might, in fact, be the CAUSE of immune problems.
8. This "rancid" environment can lead to stomach and colon cancer and adenocarcinoma anywhere else.

Those are the basics of this drug company-induced problem. Most people over the age of 40 don't have enough stomach acid. What is more often the problem is a reduced gel coating of the stomach - often from overuse of antiprostaglandin drugs - which causes stomachs to be more "sensitive." Pred also reduces the gel coating. Taking things like krill, fish, olive or flax oil (pro-prostaglandins) can help to restore that lining health.

Like any drug you take, there can be a rebound of symptoms when you withdraw from it. You should not go off of a drug without talking to your primary doctor. Ditto on going on one of these acid reducers!!!

They can affect MG too (see below articles).

Achlorhydria - No stomach acid
Hypocholorhydria - Not enough stomach acid

I realize that some of you get diarrhea or other digestive issues on Mestinon. You're the ones that might have enough stomach acid and Mestinon creates more. You need acetylcholine to make stomach acid (along with gastrin and histamine).

The "antihistamine" or "anti MG" is Benadryl. It does the opposite of Mestinon. That's why it's relatively contraindicated in MG.

The body is one big biochemical factory and if all the little cogs in it aren't working well, your entire body suffers. We are supposed to have stomach acid and the amount of people with too much is actually less than 4% (from studies).

There are so many reasons for an "upset stomach" other than the alleged too much stomach acid. It's always important to know the actual reason before you get a drug thrown at you!

So while you might think you feel fine after downing these drugs for years, the effects on your body might not be known right away.

My family has a history of both achlorhydria and colon cancer/adenocarcinoma. I had achlorhydria starting in my 20's. I believe it did way too much damage to my GI tract, though I have managed to heal the majority of it. Since taking Betaine HCL after my B12 deficiency (from achlorhydria) was diagnosed, I don't have digestive problems, my calcium, albumin and iron have normalized and I don't get infections like I used to. I still have to take B12 the rest of my life (sublingual methylcobalamin that absorbs directly into the bloodstream).

When you get to the point of a B12 deficiency, it means that your liver is on empty. It normally stores at least 6 years of B12 in the form of cyanocobalamin. It converts it into methylcobalamin in order for the body to use it. So by the time I had my deficiency, I was OUT. Nothing was getting to my tissues. You need B12 for every single cell in your body. It's the one vitamin you can't get too much of, unless you have a liver disease. Without it, however, you die. And it felt like I was dying.

So, please be a bit more respectful of your body and what it was meant to do for you. Drugs can be useful but there are many alternative therapies or plain common sense that can help you too!

Annie

http://www.intelihealth.com/IH/ihtIH...=dmtHMSContent

http://www.nymedicalnutrition.com/im...LNUTRITION.pdf

Side Effects of these drugs
Due to their cholinergic effects, some of these medications interfere with nerve function.

http://www.medcline.com/nutrient-def...x-medications/

They forgot about albumin deficiency in the above article.

http://medical-dictionary.thefreedic...linergic+Drugs

Magnesium: It is in many foods we eat. What is not good for MG is a huge dose of it. We need a certain amount of magnesium and what you get from foods will not adversely affect MG.

Thanks for the replies.
First for the diagnosis of MG.
About 10 weeks ago following a week of my wife telling me it looked like my right eye lid was swollen I started having ptosis. My right eye closed almost completely. It was worse in the afternoon when I was driving. A visit to the ophthalmologist resulting in a ptosis diagnosis but he said I needed to have cataract surgery first. A few days after the second cataract surgery I started having double vision. He said he wanted a second opinion from another doctor in his practice but also sent me for blood tests for MG. Over the weekend the symptoms got worse. I had tunnel vision, colors changed on me, face of people 100 feet away lost features like eyes and nose etc.
During the exam by the second doctor he received the results back on the blood tests. The binding part where over .3 was a positive was 6.0. The second tests where over 15% was positive was 43%. The third tests was still pending. The doctor stopped in the middle of trying to fit lenses to correct the double vision, said I definitely had MD and we scheduled an appointment with a neurologists with MG experience.
I will add another response for the Prilosec question

For the Prilosec question,
I have tired easy for most of my life. It has gotten worse over the last 20 years. I love to walk and can do so for miles as long as it is a level walk. If I try to walk up or down an incline however I tire almost immediately.
About 15 years ago I was diagnosed with a hiatal hernia. I had acid reflux from that. I have been on acid reducers since then, mostly Prilosec but Nexium for a while. When Prilosec went OTC I switched back. When the doctor wanted to increase my dosage I had him write a prescription. When I complained of being excessively tired he prescribed Synthroid. Said my levels were marginal but synthroid levels are not a one size fits all or something like that. When that did not resolve the problem he doubled the synthroid. After that I just stopped complaining.
A few years ago I started getting severe cramps in my lower right leg if I drove for any distance. When it got to where it happened on just a 10 mile drive to work I starting searching on the internet. Some users sites had reports that b12 helped some users. I also learned that b12 was hard to absorb and you couldn't easily get to much. I already knew that acid reducers affected absorption. When regular B12 did little I switched to subliminal (dissolve under the tongue). That appeared to resolve the issue. When the symptoms subsided I would stop the B12. Every year or 2 when they first seemed to reappear I would take B12 again for awhile.
I wondered if the MG had been around for a long time and was causing the muscle pain in my leg. I also wondered if B12 could reduce the symptoms of MG.
One more point. I have read that emotional events could bring on MG. I have had a couple of very emotional periods in my life.
In 1991 my oldest Daughter was a murder victim. She was shot in the face with a shotgun by a would be carjacker. My life long symptom of tiredness and over all aches and pain hit a new level after that.
I spent most of 2012 at Duke medical center watching my 3 year old Grandson die from Late Infantile Medocramatic Leukodystrophy. He was diagnosed in January. He spent 5 months under going a stem cell to bone marrow transplant. In December on his 5th trip back to the hospital he died from complications of MLD complicated by the effects of the transplant. My external symptoms of MLD stared about 4 months after his death.

Wow, I can't imagine the pain of what you've been through. I'm so sorry.

Yes, stress like that can bring on a disease.

What kind of doctor threw Synthroid at you? The same one that threw the Acid blockers at you? The best doctor to evaluate endocrine issues like hypothyroidism is an endocrinologist. And gastroenterologists should thoroughly evaluate any GI tract issues.

What if you've had Celiac Disease this whole time? There are so many reasons for digestive problems.

I would highly suggest you get your B12 checked and possibly other vitamins like folic acid, vitamin D and iron, albumin and calcium/electrolytes. You've been on those acid blockers way too long. They aren't meant to be taken on a long-term basis!

This is the interesting thing about diseases. Simply because symptoms stop, that doesn't mean the disease state or underlying cause has. So stopping meds that would help you and are meant to make symptoms lessen or go away is not exactly the thing to do (like the B12).

It might be time to get a 2nd opinion from a different internist.

You might have had MG a long time. It's hard to say. People are really good at dismissing symptoms or just putting up with them. I hope you will get the best care possible for everything going on. Whatever you do, don't stop the acid blockers abruptly! You need to be followed by a very good doctor if you plan on doing that.

When I had an upset stomach from not enough acid, before I knew that was the problem, a doctor told me I had gastritis and should take Tums. ;) Wrong. Six months later, I started the Betaine HCL (a mild acid usually made from sugar beets) and everything got better from there and quickly.

You've been through a lot! Take good care of yourself. Again, I'm so sorry about your daughter and grandson.

:hug:
Annie

I meant to say my external symptoms of MG

Edwinlgreen, Along with AnnieB3, I too, am so very sorry for your tremendous loss....