Sunday, December 30, 2018

What Health Care Pros Don't Tell You

This isn't my normal home DIY project or crafty subject with pretty pictures, its more like a PSA (Public Service Announcement).  This story is wordy and lengthy, but please, take the time to read it and tell all you know who will listen.  You may think what's going on with me isn't that bad, but it could've been way worse if things hadn't happened the way they did.  If I can help just one person, I'll be a happy lady!

Disclaimer: The following is my experience and my story, you may be different from me.


Please BEWARE when taking the following medications!

Nexium (Esomeprazole Magnesium)

Fosamax (Alendronate Sodium)

Reclast Intravenous (Zoledronic Acid-Mannitol-Water)

I'm 52 now.  Just a little history that will make more sense as you keep reading.  I was born with a heart murmur.  That was diagnosed many years later as Mitral Valve Prolapse.  I take blood pressure medicine to regulate that and I've been on it since I was 17.  I was diagnosed with scoliosis when I was 15 years old. I have an "S" curve and had surgery to stop the curving from going any further.  I have two Harrington Rods that hold my curved spine in place of moving any further.  I'm surgically fused from top to bottom of my spine as well.  I can bend my head all around and bend at the waist and that's it, no more flexibility in my spine.  When I was in my early thirties I was bit by a copperhead snake.  I've had really bad stomach problems since that.  Heartburn and severe reflux.  I was told by my MD to take an OTC stomach pill, like Nexium to alleviate the symptoms.  I was taking Nexium or some form of it daily since then.

When I turned 50 I happened to be unemployed and without medical insurance.  I made my check up appointments every three months to get my blood pressure prescription, but that was it.  My ANP (Adult Nurse Practitioner) wanted me to have all these test for "people who turn 50", but I could not afford it.  Luckily, almost exactly 1 year to the day later that I got laid off, I was recalled back to my exact job. Yay! I have insurance again!

Now I was 51.  I had lots of test done, one of which was a bone scan (8/22/17).  I also had a giant blood panel (8/5/17) done.  With these test results I was diagnosed with malnutrition, Osteopenia and was told I was drinking too much water.  What? The last blood work and check up I had a year ago, my ANP was literally telling me I had the makeup of a 20 year old.  What in the world happened to me?  She immediately put me on a long laundry list of all kinds of supplements that were supposed to make me better and Fosamax to help me build bone back to improve the Osteopenia.

(9/2017)
I took the Fosamax once weekly.  I had to take it in the morning before I ate or drank anything (except water to get it down) and then wait 30 minutes before I had coffee or breakfast.  It made me feel really awful for about an hour after taking it and then that feeling would dissipate.  I took them on Saturday mornings because it was such an ordeal.

(2/2018)
Now I had developed a new problem.  My left jaw joint had such bad pain that I could barely eat.  I could barely open my mouth.  It was painful to brush my teeth, yawn cough or really anything except talking.  I really thought it was due to a bad tooth that needed repair so I went and got the tooth repaired (2/5/18), but the pain only got worse instead of better.  My ANP put me on a round of steroids (medrol dose pack 2/15/18).  That was a huge mistake!  I will NEVER take steroids again...EVER!  I had a terrible reaction to them, but that's another story for another day.

(4/2018)
One evening after work I was sitting and watching TV when a commercial for a similar bone medication to Fosamax came on and one of the side effects was jaw joint degeneration. It caught my attention real fast!  I ran to the computer and Googled the side effects for Fosamax.  Jaw joint pain and degeneration was a side effect.  Thank you Lord for letting me see that commercial!

To read what the FDA says about the side effects of Fosamax, click here to be taken to the FDA government website.


The following was copied from Everyday Health.com:

Q: I am very concerned about the side effects of Fosamax. Both my mother and I are on the drug. She now needs to have oral surgery and the surgeon cannot do the procedue due to loss of bone mass in her jaw from the drug and risk of jaw fracture. Also, I have been on Fosamax for a few years and have not noticed any difference on my DXA scan. Do the negative side effects outweigh any benefit that I have or will receive?

A: There is much controversy about Fosamax and the risk of osteonecrosis (death of bone) of the jaw bone. According to a 2008 report by the American Dental Association, the risk of osteonecrosis associated with the use of medications such as Fosamax remains low. The report also stated that the benefits of oral bisphosphonates (the class of medication that Fosamax is in) significantly outweighs the small risk of developing osteonecrosis. According to a 2010 study, the incidence of osteonecrosis of the jaw bone in patients using medications similar to Fosamax was 1 out of 952 patients or a 0.1% risk. You are well aware of what a serious side effect this can be with seeing it first hand with your mother. You may want to talk with your health care provider regarding your concerns about the side effects and if the medication is helping you or not. Your physician may be able to recommend a different treatment option for you. As always, talk with your health care provider regarding questions about your medications and medical conditions. Jen Marsico, RPh
 

I took my last dose of the Fosamax on 3/31/2018 which was the weekend prior to me seeing the commercial on TV.  The day after I saw the commercial, I called my ANP's office and spoke to her nurse.  She relayed my concerns to my ANP and then called me back and told me that she said that the Fosamax could cause these problems but it was very rare.  I must be rare, because it happened to ME!  She then told me that I had to take something for my Osteopenia.  She suggested the Reclast Injection. It was a once per year injection and had to be given to me at our local cancer center as a slow infusion.  Having this infusion at a cancer center did not settle well with me at all.  It seemed very scary to me.

(5/17/2018)
About three months later and I'm back at my ANP's office for another blood test to see how I'm doing with the malnutrition.  Very little improvement.  I'm talking a tiny amount not even worth mentioning.  I had done everything she told me to do and then some.  I was devastated.  She added more supplements and tells me to increase the intake amounts on others.  I took the new list and went home feeling very sad.  I could not believe that I was not getting better.  We then scheduled the Reclast injection for June 19, 2018.  At least my jaw was feeling much better again.

June 19, 2018 at 4pm I arrived to get the Reclast injection.  Before they did anything I expressed my concerns about how I reacted to the Fosamax.  The nurse consulted with the pharmacist on duty and they assured me that this injection was mild compared to the Fosamax and that there was only a slight 2% chance of problems.  Guess what, I'm that 2%.  It was awful!  I felt like I'd been hit by a Mack truck for about 1 week after.  My jaw started to hurt again!  I was so scared that my jaw would get to the point I couldn't eat.  This poison was in me for a whole year!

My husband, my Mama, my Daddy and my sons were all telling me that something just wasn't right.  I didn't think so either.  I got to thinking that there must be a better more natural way of getting healthy.  My Mama sees a naturalist on a regular basis and she is SO much better now than she was before she started seeing her.  I was starting to seriously consider seeing her naturalist too.

In the meantime, my back went out.  That happens occasionally due to my scoliosis and the older I get, it seems to be for no good reason at all.  I just wake up like that.  I went to visit my Chiropractor (7/11/18).  He always asks me if there are any new symptoms to report and I told him about my jaw.  When I mentioned the Fosamax and Reclast his eyes widened and he said, "Those drugs are no good!"  He reminded me that his wife is a Chiropractor too, but she specializes in Nutrition.  He told me that she could help me get healthy again in a more natural way without all the harsh drugs.  He recommended I make an appointment to see her before I left the office that day. I did.  I was so excited to see her but I had to wait almost a month for my appointment.  I would wait.

(8/7/18)
The day finally arrived that I could go see my Chiropractic Nutritionist.  After I explained to her all my long list of problems, she straight away said, "You do know that the number one side effect of the long term use of Nexium is bone loss?"  No, I did not! Not one medical doctor or medical person had ever mentioned this to me.  Pardon my French, but I was PISSED!  She also told me that the bone loss and malnutrition was all caused by the use of Nexium that I had been taking daily for 20+ years.  NOT GOOD!  She explained to me that the Nexium had ruined my stomach to the point that it was not processing my food properly. I was either pooping or peeing all my nutrition out and very little of the good stuff was actually entering my body for nourishment.

My nutritionist then proceeded to tell me about another patient she treats that has almost the same story as mine, except she actually had to have her jaw joint replaced. Her face is now deformed and she has an audible clicking noise when she moves her jaw.  So sad.  She then reminded me that it was very important that we get my bone health back to normal.  She said to me, "You have two Harrington Rods that need to hang on to something in there or they will come free and do major damage."

Now I'm really freaking out!

My nutritionist put me on a regimen of doTERRA and PURE supplements.  One of thePure supplements flushed the poisoness mess (Reclast injection) out of my system and others went to work on my poor old stomach.

Before I started taking the supplements I had awful reflux and a burning sensation right at the top of my stomach every time I ate.  Some nights the reflux would wake me by trying to choke me to death!  With the regimen of supplements I've been on, my reflux has disappeared completely, very rarely does my stomach burn anymore when I eat, but bonus, my hair and nails grow like weeds and my skin is so much smoother than it used to be.

I was a sick lady before!

Since I've started on my road to recovery, I've been back to the ANP once (9/14/18) to get my blood pressure medication refilled.  My BP medication is the only thing we can't replace with a natural supplement.  While I was there at the ANP's office for my visit she asked the normal questions as they do, and when I started to fill her in on my new supplement regime and why I was taking it, she got this strange look on her face and simply couldn't get me out of her office fast enough.  By her expression when I was telling her that the Nexium caused all these issues, I'm pretty sure that she's aware that she messed up by not informing me all this could happen.  Maybe she never put two and two together when she saw my bone scan with the bone loss and the fact that I'd been on Nexium for such a long time.  I am however grateful that she even ordered the bone scan to begin with.

I won't be going back to see that ANP ever again and I'm still wondering why she never told me the things that my nutritionist told me about the Nexium and its side effects.

I went to see my new doctor (she's a DO) on November 27th.  She's going to wait a bit longer to do another blood test, but I know I'm better, I can feel it!  She's very thorough already.  She told me that she would further read over my medical records that I brought her from my last ANP's office and she did!  Her office called and told me that after she reviewed my chart, she felt like I needed to have some allergy testing done and I'm having an allergy test done in January to see what all I'm allergic to.

My new doctor wasn't completely agreeing with me that the Fosamax and Reclast hurt my jaw, but she said if it did, it would be quite rare.  Um, that's ME!
***Do your own research, it happens to lots of people.***

I've been taking doTERRA and Pure supplements full time since August.  I'm not going to lie, they are spendy for a person on a tight budget!  But its so worth it to be feeling so much better now.  I had no idea how bad I felt, until I felt better!

Today I am happy and healthy and my jaw just occasionally hurts if I've chewed something a little tough (like steak) or over worked it taking big bites (subway sandwich).  I don't think it will get any better than it is right now, but at least I can eat without pain now.

If you or anyone you know takes the Nexium type of medication on a regular basis, please share this information with them.  Also, if you know of anyone taking Fosamax or the Reclast injection and they feel like trash, let them know this information too.  Apparently my reaction to all of this is rare, but maybe that person you know is really sensitive to EVERYTHING like I am and they have no idea why they are feeling the way they do.

The lesson I've learned (the hard way) is to ask questions, lots of questions! Don't just trust that your medical professional is giving you the best thing for you, they may not be doing that exactly.

If you made it this far, thank you for reading my story.  Please feel free to ask me any questions down below.  If I don't know the answer, I will try and find out for you!

It doesn't have to be done all at once.  It is a slow process in the works! C-ya next time!
I'm Linking to:
These lovely and FUN parties!
Between Naps on the Porch
The Dedicated House  - (I was featured

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2 comments:

  1. Oh, my goodness, you have been through the wringer!! It sounds like you are on the right path to being healthy, and I am very happy for you! It is difficult to know what to do and who to listen to when it comes to your health. Thank you so much for sharing your story at Celebrate It!

    ReplyDelete
  2. Thank you so very much Teri for always leaving a kind comment and being so sweet! :)

    ReplyDelete

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