Omeprazole (Prilosec) Withdrawal

Writing often helps me to sort out my thoughts.  It has been that way for my entire life.  If I want to figure something out, all I need to do is start writing.  And true to form, while writing my weekly recap it suddenly occurred to me that the strange stomach aches and trembling I had been feeling for the past couple of weeks might be connected to my cutting back on Prilosec, as per doctor's orders.

I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day.  The last time I experienced trembling of the same sort was when I stopped taking clonazepam.  The trembling lasted about a couple weeks.  Could it be that my body simply "withdraws" from chemicals in this bizarre way?  Could a simple, over-the-counter drug have this kind of effect on the body?  I had to check it out.

Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal.  Why hadn't anyone warned me that it was possible and what I might expect?

According to many websites, the side effects for medications are also the side effects of withdrawal.  The particular Prilosec I have been taking is omeprazole, delayed-release capsules.  Prilosec is a proton-pump-inhibitor (PPI).

So what is a Proton Pump Inhibitor (PPI)?  Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested.  This acid is released through proton pumps which allow the chemical to pass into the stomach.  Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.

Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).

According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion).  The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."


Symptoms of PPI withdrawal may include:

• Rebound acid hypersecretion within two weeks of withdrawal
• Heartburn
• Acid reguritation
• Dyspepsia

Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added). 

I am not the only one to believe PPIs are greatly over-prescribed.  I have seen it in my friends, and I have seen it in my own family:  Feeling a little indigestion?  Let's put you on a PPI and dismiss it as that.  As what??  My daughter was seen for an "nervous stomach" by a doctor while she was attending college.  The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again.  That was three years ago!  She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not.  When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal. 

The internet abounds with forums and patient discussion groups regarding PPIs.  Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:

• Taper off slowly to reduce stomach pain and hypersecretion of stomach acid
• Take Rolaids Antacid tablets as needed during withdrawal
• pH levels may be out of whack
• Food allergies and sensitivities may crop up
• May experience loss of appetite
• Trembling, shaking, "buzz"
• Troubles with Vitamin D and calcium defiencies to the extent of severe bone density problems
• Risk factor for Clostridium difficile -associated diarrhea

Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").

I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame.  Most patients (particularly American patients) want a quick fix.  If they don't feel well, they go to the doctor and get something for it.  In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix.  There are many more factors and sides to this ideology, but that is not my purpose in writing today.

I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge.  Somewhere between those two points lies a gap that needs to be addressed and filled.  The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around?  Just my two-cents...

Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552

Week 14 Recap: Finding "Normal"

This week I found out that our neighborhood has levels of PCE (the nasty carcinogen, tetrachloroethylene) higher than the state allows due to the laundromat leakage in 1989 about a block away, and have been wondering what this means for us... I've always believed this house was making us sick. I drink more water than anyone in this family and I drink it out of the tap. If PCE isn't in the water, is it in the ground? We’ve kept a vegetable garden for years! Our house was not one of the random houses tested, but it would be interesting to know.

Well, back to the recap:

I’m beginning to believe ergocalciferol (prescription dose Vitamin D) might be causing or contributing to what I call occasional “left subclavian” pain— pain that is in the general area below my left shoulder that tends to follow the left subclavian vein/artery. Sure enough, within a day of taking the ergocalciferol, this annoying and random pain was back. The good news is that it is not a long, sustained pain, but something that is just felt off and on throughout the day.

On Wednesday morning I went in for the EGD (esopagogastroduodenoscopy), in which the doctor sent a scope down my esophagus and took a look around. At 8:30 in the morning, I was prepped and ready to go. My blood pressure at the time was 106/72, and I was hooked up to a saline IV solution. By 9:15 I was wheeled into the procedure room full of monitors and equipment.

The nurse told me she was going to inject some medicine into my IV that would make me sleepy, and then told me to lay on my left side. I proceeded to lay on my left and the next thing I remember, I was waking up in a completely different room, the procedure already completed. I was informed that the doctor had tried to talk to me but apparently I was still out cold. It doesn’t take much to knock me out, it just takes a bit to keep me there! I don’t have complete memory of laying on my left side, so I am sure somebody must have been there to catch me. We joked later about the medical staff taking bets to see how long till the patient hits the table.  Somebody could have scored big on me!!

As it turns out, I have a “small hiatal hernia” and biopsies were taken from both the stomach and the duodenum (small intestine). I doubt anything will turn up regarding celiac disease since I have been gluten-free for three months (to the best of my knowledge and abilities).

After the procedure, I felt a bit woozy, but otherwise fine. I tried to sleep off the medication, but in a noisy house full of kids, telephones, and barking dogs, even a medicated sleep was impossible. Oh, how I would have loved to sleep! Once the medication finally did wear off I realized just how sore my throat, stomach, and small intestine actually were! To top it off, I had to deal with this achiness for about two more days, including the continual taste of blood in the back of my throat, and an unpleasant three-day flare-up of acid reflux.

The arrival of the weekend marked my next dose of ergocalciferol, and right on schedule, I felt the first definite heart palpitation I’d felt all week and a double palpitation later in the day. I was also experiencing left subclavian pain again off and on all day, just when the same pain earlier in the week had finally settled down. One other thing I noticed with the ergocalciferol is that for a day or two after taking it, my stomach will feel somewhat glutened and achey. I’ve been having doubts as to whether there isn’t some cross-contamination or small amount of gluten in the pill.

ODD THINGS DURING THE WEEK:

• A headache enough to make me nauseous-- not so much when I sat down but whenever I stood-- both sides of the head.
• Left arm felt slightly numb, and the front of my left shoulder a little achy, and left hand tingling-- on two separate days during the week.
• Tongue began tingling again, late in the week.
• In the wee hours of one morning I woke up enough to feel a heavy trembling in my neck.  I was too groggy to worry and noticed only that it was a very heavy trembling when compared any previous trembling I had felt.  I fell back asleep almost immediately.

Week 14's "physcial therapy" went well.  My treadmill walks seemed easier — no palpitations, congestion, or pain that I noticed.  I totaled 115 minutes with Pilates, 80 minutes with weight-bearing exercises, and walked 16.35 miles. 

In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.

Week 9 Recap: Weird Things

Week 9 was actually a good week—I didn’t feel completely healed by any means, but definitely on my way. Every day felt somewhere in the 90% range for me. What could make it better? More sleep, more energy, and more stamina—I think they are all related, aren’t they?

Some Weird things I experienced this past week:

• Random hives inside my elbows and knees that seemed to disappear as quickly as they appeared, and often only on the left side (there is that left side again!!).  
• Feeling weak, fluttery, and “weird” come about 8:30 or 9 in the evenings. I suspect it may have something to do with low blood sugar because that is the longest time of day I go without eating (don’t eat after dinner anymore). I ended up taking clonazepam every night that week when I went to bed to help me get past these odd, fluttery sensations. 
• I usually feel fine in motion, but when I have to stand still for any length of time (whether in the check-out line at the store, or cooking at the stove), I begin to feel queasy, light-headed, and like I’d really like to sit down. Maybe it is a blood pressure thing? I don’t know.

And yet another really weird thing that happened this past week happened on Monday afternoon. I experienced some sudden, stabbing pain in left shoulder (subclavian) area which made me a little nauseous and sweaty for a few seconds. I checked my food/symptom journal and found it was the first time I have felt pain or congestion in that area in about two weeks. It had been so long, I had almost forgotten about it!! That oh-so-common left shoulder/subclavian pain and congestion had disappeared completely during the time I was off of ergocalciferol (Vitamin D) and all forms of Vitamin D, about 10 days. In fact, now that I think of it, that is the only time it disappeared.—but I’m not saying they’re related. Yet, why did it go away, and why did it return so suddenly (the day after I restarted the ergocalciferol)?

Could the left shoulder/subclavian pain have anything to do with ordinary Vitamin D? Even before the ergocalciferol prescription, I was still taking Vitamin D3, 1000 IUs/day and still feeling that congestion. Maybe for some odd reason my body does not react well to any Vitamin D.  Either way, it is turning more into pain than congestion, these days.

Once I restarted the ergocalciferol, I didn’t notice any other adverse affects from the 50,000 IUs of Vitamin D like I had previously, so besides the pain in the left subclavian area, I suppose that is good news. If it bothers me, my doctor has instructed to reduce the dose to once a week, rather than twice a week. Let’s hope the left shoulder/subclavian congestion and pain doesn’t have anything to do with it.  On the other hand, if there is a link then I should be able to avoid that pain by stopping the D vitamins-- just have to get some more sunshine, I guess. 

Maybe I should invest in a tanning bed.  :)

I didn’t experience so much back pain this week like I did with the previous week, but I did wake up with head and neck pain (always the left side!) on five different mornings which is something I’d really like to take care of, but don’t know how—it doesn’t seem to be related to my pillow because I have also experienced it during the middle of the day, far from my pillow.

I continued my “physical therapy” all throughout the week: two 30-minute treadmill walks a day, increasing in mileage by small degrees every day. The photo here shows the exact model treadmill that I own, and it has probably saved my life more than once! But this week I still experienced that left shoulder/subclavian pain and congestion through at least one of the treadmill walks every day…. Regardless, I walked 18.39 miles this last week on that treadmill.

The other two parts of my “physical therapy” include strengthening my core muscles 20 minutes a day with Pilates (using a resistance band and the “wheel” as pictured here-- that's not me with the band), in addition to using the Pilates Power Gym for 10 minutes a day for weight-bearing exercises to strengthen my arms and legs.

This is the exact model of the Pilates Power Gym I purchased about 18 months ago when I knew I was slacking on exercise and wanted to get back into shape again. We used to keep it in front of the TV so that all of us could use it while watching TV.  It ended up being used mostly as an ottoman or footrest, so now it has been relegated to my room where I use it six days a week.

So Week 9 not only included 18.39 miles on the treadmill, but also 120 minutes with Pilates, and 90 minutes on the Pilates Power Gym. I’m not feeling any exercise highs or anything like that because it is hard work-- it is not fun.  For me, it is simply therapy. My goal is to get strong enough so that I can feel “normal” again— so that I can increase my strength and and gain some energy in the process. I hope it works!

Week 7: G-Free Recap

The week didn’t start out terribly bad— I knew I was still recovering from a cold and each day I seemed a little better. I was still feeling some faint heart palpitations, particularly in the afternoons (must be when I’m getting tired or something), but at least the sneezing and coughing was going away. I took my newly prescribed Vitamin D (50,000 IUs) on Sunday, 3 days after the first dose.

I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?

Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.

I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.

My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.

I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!

I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction!  I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.

The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.

My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!

The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.

My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose?  Or still go three days and two days?