Sure wish the Dr's would have told me....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Shelliz
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/7/2012 1:47 PM (GMT -6)   
Back in 2009 I began losing my voice and didn't know why. After Barium swallow it was determined that I had severe silent reflux. Went on Nexium and had to have Laryngoscopy w/ Phonosurgery to take the clauses off of my larynx which was caused by the reflux that I didn't even know I had. So, I have been on Nexium (more recently the generic b/c I switched insurance and they wouldn't cover it) and it has been over 3 years.

Fast forward 3.5 yrs and I had begun to have severe neck pain. There wasn't any specific injury or anything that would have caused it. I was exercising pretty regularly (after not exercising for 10 months) but other than that...there was nothing that I 'did' to my neck.

I went to a spine/pain Dr. and they did an MRI and extensive blood work. Nothing but SEVERE muscle spasms were found on MRI and the only unusual thing on my blood work was VERY low levels of Vit D and low levels of B12. Maybe I am ignorant but I am beyond peeved that my Dr. didn't make it a point (when he told me I would likely be on Nexium the rest of my life) to tell me that i NEEDED to be on a supplement and vitamin. I am a super busy 34 yr old homeschooling momma of 2 young kids. I admit that I should have known better and should have researched the drug better. But... I didn't and I just trusted my Dr. Obviously the drug has either leached or not allowed the vitamins to be absorbed in my body. I am out in the sun alot which kinda stumps me and I eat pretty healthy and I am not over weight. Either way....now I am suffering from the muscle spasms in my neck (that the Dr now says is the effects of barely no Vit D in my system which is keeping muscles from healing). I am guessing my bones are probably really brittle. I am sad that I took this drug so many years and what it has now done to my body is NOT good. I just pray it is all reversible. I took myself off of the Omeprozole and will now attempt to control it solely with my diet. I am going to try the DGL Licorice and will eventually wean myself off of caffine. I just pray that my neck heals. It has been 3 months now with these severe spasms and it has been so horrible. Any ideas or thoughts are appreciated!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/7/2012 2:03 PM (GMT -6)   

Welcome to the GERD/Heartburn forum.

This forum is for questions, discussions and support relating to Gastroesophageal Reflux (GERD - Heartburn) and include Causes, Complications, Diagnosis, Medical Treatments, Surgical Treatments, and Symptoms.

I am sorry to read of your problems and I do hope that you are on B12 injections now along with RX dose Vitamin D.

You may want to ask your Dr. if you are a candidate for a bone density scan so you have a base line of where you are at right now and any corrective medications may be added if necessary.

 

Kindly,

Kitt


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene

Marcello
Regular Member


Date Joined Feb 2012
Total Posts : 75
   Posted 4/7/2012 2:32 PM (GMT -6)   
As Kitt says, I hope you start to feel better on the replacement therapy.

Do you have any other bony pain or is it just in your neck? And any other issues with muscle pain, weakness, sensation or coordination?

It's positive that the rest of your blood tests were normal. Both achlorhydric B12 deficiency and osteomalacia secondary to hypovitaminosis D are easily reversible.

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 4/7/2012 6:52 PM (GMT -6)   
Hello Shellez,
In order to avoid your situation, I have recently tapered off of my PPI (Nexium) which I took for several months, and instead now take the H2 blocker Zantec. This type of medication isn't used as often because people develop tolerance for it (so it becomes less effective), so here is my plan with my GP's support: when I find my meds are becoming less effective, I will rely on other products for awhile including various teas (licorice, rooibos, ginger, chamomile), probiotics (yogurt and other sources), chewing gum, Gaviscon, TUMS, Pepto Bismol at night for my tender stomach, and other products I haven't tried yet. I lost my singing voice last fall, so I will be getting some slippery elm to hopefully avoid that happening again. I might even decide in the future to go back on a PPI (Prilosec) for just a month. I'm on a lower dose of Zantec (150 mg) in hopes that it will remain effective for a longer period of time. The Koufman diet has been very helpful in reducing my throat symptoms. I already had osteopenia before all this acid reflux started over a year ago, so I am treading carefully. It isn't easy, the MD's are really pushing the PPI's, but those long term side effects are just not acceptable to me.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 4/7/2012 7:57 PM (GMT -6)   
Hi Shelliz,
I suspect that your doctor didn't expect the medication to create that type of extreme situation.  It's really not typical.  Many people take PPIs for extended periods (much longer than 3.5 years) without those types of problems.
 
I have had extensive blood work and all my levels were normal, even when on PPIs.  I did take Vit. D and calcium regularly to protect my bones.  My PCP and allergy/asthma docs have done detailed blood work to follow those things and fortunately I've done fine.
 
I've had a double-whammy in that I've taken PPI's for about 15 years, and at the same time have had to take inhaled (and at times in the past oral) steroids that are also hard on bones.  In addition to that, I went through menopause in my early 40s and that is another risk factor.
 
I'm nearly 60, and have had bone density tests regularly (every 2 years).  My last two tests have me at "osteopenia", which is the level before osteoperosis.  I can't blame all that on PPIs though, since steroids are actually worse on bones than PPIs.  I realize that it's impotant that I take calcium and D regularly and do weight-bearing exercise to keep my bones in shape.
 
Again, I'm sorry that you are having the problems you're having, but it's not something that affects all people who take PPIs.  That's probably the reason you weren't strongly warned.  Hopefully once you get on the supplements and they build in your body it will clear up your problems.
 
As Kitt said, it would be worth asking your PCP if you are at risk and should have your bone density checked.
I hope you feel better soon,
Denise

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 4/8/2012 6:32 AM (GMT -6)   
I love Denise and all ther support she gives people here, but I strongly disagree with her on this issue.  Personal stories are compelling, but Doctors should definitely be warning their patients about the long-term risks of PPI use described in these studies.
 
In this study,
 
"The risk of fracture increases by 29% with the use of PPIs. Hip fracture risk rises by 31%, vertebral fractures by 54%."
 
In this study
 
 "Postmenopausal women with history of smoking who take PPIs for longer than two years have more than a 50% chance of sustaining a hip fracture"
 
I don't smoke, I am more concerned about the vertebral fracture risk because I already have severe arthritis in my lumbar area, and spinal stenosis.
 

Marcello
Regular Member


Date Joined Feb 2012
Total Posts : 75
   Posted 4/8/2012 8:01 AM (GMT -6)   
Interesting posts.

Sunbeam you raise a valid concern and in light of the info, perhaps doctors should start telling patients regarding that specific side effect before prescribing PPIs. However, Denise's post was, as far as I can tell, 100% accurate.

The apparent (and controversial) severity of the association between PPIs and fracture (as the dates in your links show) was not known until recently. Denise wrote that this scenario isn't typical and that many who take PPIs chronically don't experience this complication. Both these statements are true.

There is a huge list of documented possible side effects of PPIs (and indeed for every single bioactive drug) and it would be unrealistic for a dr to list them all. At the time of the prescription (and one may argue even now), I don't see it as unreasonable for the dr not to list all but the most serious and common side effects. In fact I know many don't even give any side effects for PPIs and even for stronger drugs when prescribed.

It's my belief that except for the most serious and common side effects, there's an onus on patients to read the information leaflet provided with the medication and educate themselves. That implication is enshrined for example in why we call it drug concordance now instead of compliance. There may be an argument that the severity of the association between long-term PPI use and fractures is strong enough to warrant mandatory counselling of this specific side effect prior to prescription but it's a value judgment, no more than let's say the risk of Stevens Johnston Syndrome or B12 deficiency.


Interestingly, there are 3 good epidemiological studies (which the FDA have inexplicably ignored) that demonstrate highest risk of fracture in the first year but a reducing risk thereafter:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073046/?tool=pmcentrez

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 4/8/2012 9:05 AM (GMT -6)   
Sunbeam,
I love the support you provide as well.  I'm not arguing with the evidence.  There are plenty of dismal studies about PPIs, steroids, and menopause. Don't get me wrong.  I understand and totally believe that there is lots of evidence that PPIs should be taken with eyes wide-open.  Actually all drugs need to be taken sparingly and only when absolutely necessary.
 
That said, there are some of us have been given the short stick physically, and we need to weigh the benefits vs the risks.  Telling people who are suffering from reflux, or asthma that they must not take whatever it is that they need to take because the risks are so high can be debilitating.
 
I agree that some people take PPIs too freely,and at times they're given out too easily.  Pharmaceutical advertising also puts pressure on doctors as their patients often request the medication they see advertised on TV.  Perhaps Shelliz's condition was not bad enough to warrant the risk of taking the medication.  Perhaps it was.  Still, I understand her frustration that she was not given the information she was due that would allow her to make an informed decision.
 
Over my lifetime I've had to make decisions about the risk-benefit ratio of many things. 
 
Unfortunately, as most of us here on the forum have discovered, (and as Marcello so wisely stated) we most often have to search out this information ourselves. 
 
Still, I think there is a place for anecdotal evidence that these things can be taken when necessary and often the benefits make the risks worth taking.
At those times it's very comforting to know that there are actually people out there who've had to take this or that medication that has risky side-effects listed and the world has not caved in on them. (Again, Marcello has astutely pointed out that all medications have long and scary lists of side-effects.)
 
When I discussed the risks of having a Nissen fundoplication and other medications with my asthma/allergy doctor he very wisely quotes Thomas Aquinas:
 
“If the highest aim of a captain were to preserve his ship, he would keep it in port forever.”
― Saint Thomas Aquinas   
 
We can run around with our hair on fire about all kinds of medical interventions that have substantial side effects.  But when it comes right down to it, we have to make a decision as to whether we're willing to take that risk in order to achieve an overall better quality of life.  Is there a chance that we'll be the ones who succumb to whatever the side effect is?  Of course.  Still, what is the alternative? 
 
I'm sure there are people who take PPIs so they don't have to make any lifestyle changes that will decrease their reflux issues.  There are also people whose reflux is damaging  their bodies and have changed their lifestyle choices without improvement.  Still others want to be able to enjoy their trigger foods and consider it important enough to their happiness that they're willing to accept the risk.
 
Personal anectotes offer others who take PPIs because they don't have any other options (and believe me, many don't) some comfort in knowing that there are people out there who have taken them without dire consequences.
 
I'm sorry if I've offended your sensibilities by sharing my own experience.  I do think it's important to put it out there.  There are some, like you, who will find my comments offensive and off-putting, while others who have fewer choices will take comfort in my experience.  In the end it's all about personal choice.
 
I'm glad we have people like you who delve into alternative options and offer them to others who may be able to follow those alternative practices with success.  We're blessed here at the forum to have a wide range of experiences, philosophies, and information.  What a great resource we're providing for others who are seeking answers.
 
Very best wishes,
Denise
 
 

Post Edited (dencha) : 4/8/2012 9:34:30 AM (GMT-6)


sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 4/8/2012 6:50 PM (GMT -6)   
Marcello,
The severity of the fracture risk was known in July 2011 when my GI doc told me I "could not afford" to not take a PPI for the rest of my life, since I have Barretts'. That is poor advice, I discovered on my own, and my gp agrees. I don't think he is the only one giving this advice. The patient leaflets you mention I believe provide no information on the severity of these risks. So I will continue on my path of avoiding PPI's.

Denise, your doctor's statement is similar to what I recently posted on another thread: most people die in bed, so maybe we should not go to bed!

Thanks to both of you for your thoughts.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 4/8/2012 8:07 PM (GMT -6)   
Marcello,
Thanks for the link to the fracture study.  I've saved it in my collection of resources.  Sorry to hear you're still struggling with reflux.  Have you seen your surgeon or GI Doc?
I hope you find a solution very soon.
Best wishes,
Denise
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 3:00 PM (GMT -6)
There are a total of 3,004,374 posts in 329,140 threads.
View Active Threads


Who's Online
This forum has 161738 registered members. Please welcome our newest member, Rosheen.
235 Guest(s), 13 Registered Member(s) are currently online.  Details
SoMuchFun, Froggy88, Kokopuff7, Kent M., MamaLama, Vdang2k, running wild, Ss800, compiler, Girlie, Missouri, dbell, F8