My Symptoms following Synvisc

I'm 3 years out from my Synvisc injections after my OS suggested this about 2 months following arthroscopic knee surgery after an injury. I had a life-threatening adverse event/reaction to Synvisc. Most of the symptoms lasted WELL over a year, and I still deal with some. IV chelation & IV nutrition therapies, as well as specific homeopathics SAVED MY LIFE and have helped to restore my health. I still deal with some of these symptoms, especially if I go too long without chelation. I've come a long way since this first started, but it's been a LONG, HARD-fought battle to get to where I am today. And EXPENSIVE. Consider this BEFORE you consent to Synvisc injections for knee pain or when your OS suggests that you're a good candidate for these injections. You're likely a better candidate for Ozone injections that actually heals the joint and prevents knee-replacement! [I am not a doctor and nor do I profit off of ozone treatments. Just a person who went through hell physically and emotionally following Synvisc injections.]

Is it worth years of this:

a] debilitating fatigue
b] periods of breathing difficulties
c] racing heart and cough
d] Sticky skin & sticky inside of my mouth
e] loss of coordination and balance, and some short term memory
f] Dizzy spells/passing out
g] persistent tremors throughout face, chest and arms
h] brain tremors -- feels like the vibration of an idling car
i] Intense acid burning that started with the knee injection, and burned down through the lower leg.
j] The intense burning then moved throughout my body and entire nervous system, including my brain. It was unbearable in the first several months
k] Random body jerks and pressure in my chest that started with the injection.
l] Numb arms, hands, legs, feet
m] Body trembled uncontrollably
n] OVER THE TOP chemically sensitive since injections
o] I had extreme tightness behind the knee for weeks, Baker's Cyst was ruled out

Denial of Causation

If your adverse event isn't isolated to the knee or fall into a typical immulogical response, expect "Denial of causation" from those administering Synvisc to be your biggest hinderance to finding the medical help you need.

Something to keep in mind.

"Chemicals Threaten Our Bodies"...says the President's Cancer Panel

This landmark report is welcomed. Since many prescriptions drugs are "chemical based," I FULLY expect the forces/money behind them to fight to keep the link drawn between the two. But I say, wake up AMERICA, you are being poisoned by the very institutes charged with keeping your best interest in mind, and placing the patient first.

Consider that Synvisc alone has two highly toxic chemicals, Formaldehyde and Divinyl Sulfone discussed extensively on this blog. And this passed the FDA approval. As someone whose health was destroyed from the moment this product was injected into my body, this landmark 240 page report released on May 6, 2010 warns that "our lackadaisical approach to regulation may have far-reaching consequences for our health."

To read further, go to http://www.nytimes.com/2010/05/06/opinion/06kristof.html to read the New York Post Op Ed New Alarm Bells About Chemicals and Cancer .

The read the President's Cancer Panel's actual report, go to this link:

http://deainfo.nci.nih.gov/advisory/pcp/pcp08-09rpt/PCP_Report_08-09_508.pdf

"The Panel urges you most strongly to use the power of your office to remove the carcinogens and other toxins from our food, water, and air that needlessly increase health care costs, cripple our Nation’s productivity, and devastate American lives."

I would add...pharmacueticals and GMO food.

The truth is, this is NOT NEW. The naturopathic community has been screaming about chemicals and the damage they cause to the human body for years. But I'm thankful that this is hitting the mainstream news FROM the mainstream medical community!

Happy New Year

I'm approaching the 2 year mark since my life was jeopardized by a series of Synvisc injections. If ALL of the information to make a true "informed consent" had been mandated by the FDA then my life would have been far healthier and more productive during this time. Every human being considering Synvisc should be aware that permissible levels of formaldehyde
[a known neurotoxin and carcinogen with a Health Rating: 3 - Severe (Poison)and cannot be made nonpoisonous] and Divinyl Sulfone
[the blistering agent of mustard gas] are allowed and not disclosed.


This injection poisoned me and burned through my entire nervous system. As it stands, I've come a long way thanks to the incredible dedication and extensive IV and detox treatments from my NMD. He has never wavered in seeing me through this ordeal. But I am still plagued with brain tremors and debilitating fatigue since these injection. And I am not alone. Many others have suffered and were blatantly dismissed by their injecting physicians as well.

It's a sad state of health affairs when pharmaceutical companies are so powerful that the welfare and lives of individuals mean absolutely NOTHING. On Feb 20, 2008 the US Supreme court voted 8:1
to protect the manufacturers of medical devices from ANY liability if the FDA deems the device "safe". Yet Synvisc and other viscosupplementations break 2 of the 4 criteria for Medical Device classification. 1) it metabolizes and 2) it causes a chemical change. This classification also means that the metabolic by-product is NOT KNOWN. This classification allows Synvisc on the market without a REMEDY when it goes systemic and causes problems like poisoning and pharma injury. How does this happen? MONEY...follow the money.

Read through the extensive information on this blog BEFORE you consent. The least I can do is warn others so they don't SUFFER hardships like too many of us have. I wish someone would've INFORMED me.

The Knee Geek/Guru Site

A friend of this blog contacted me last week. The The Knee Geeks/Guru forum deleted their profile, which resulted in the removal of their posts. This came without a warning, yet accused them of being "flagrantly commercial" for suggesting nontoxic solutions to pharmaceutical viscosupplementations. This poster first sought help from The Knee Geeks/Guru forum immediately following a life-threatening reaction to Synvisc. There they discovered that they were not alone. Their posts progressively turned into the solutions they'd found to help improve their health and other options for joint problems that worked for them, and others they know...including me. The Knee Guru's apparent tolerance for posters who approve of Synvisc or other viscosupplementations in a repetitious manner leads one to speculate whether they singled this poster out. Yet their "site ethos" states:

"Site ethos - this site is run by a medical professional, and professional standards apply.
Although the content may be couched in lay terminology as far as possible, the material is sufficiently educational to be relevant even to medical professionals themselves.
There is no skew of content due to pressure from sponsors. Every attempt is made to be honest with opinions."

If this is true, then why delete a profile from someone who truly suffered and offered their solution to those who have suffered, might suffer or will suffer?

The Knee Guru also site claims:

Funding - currently the site has no direct commercial sponsors. The site is owned by ftmg Associates Ltd. The site has a key philanthropist who wishes to remain anonymous, and who has a special interest in building the KNEEguru into a quality information resource for patients. We hope in time to attract academic funding from offering the site with its vibrant bulletin board as a fieldsite for academic study.

Yet the forum is surrounded by advertisers, including those promoting Synvisc/Synvisc One--hidden behind "OA Knee Pain Treatment--one injection gets up to 6 month..." and many others.

The deletion of this poster's profile also happened within days of disclosing that the FDA no longer allowed the public to read the actual "event descriptions" from patients or health care providers on the MAUDE data base. [Discussed further on Sept 28 post ] Note: this change in public access took place ONLY on the MAUDE site for "medical devices", which is how the FDA classifies Synvisc. [Which is also questionable since it apparently is metabolized and anything injected into the body will cause a chemical change.]

The goal of this blog is to make known the things that people SHOULD KNOW BEFORE they consent to Synvisc. And to let those who reacted and were dismissed by their physician(s) know--YOU ARE NOT ALONE. If I, along with the many others in contact with me had this information PRIOR to our Synvisc injections, our lives would be MUCH healthier today. We are ALL still struggling to return to our "pre-Synvisc" health status...years out from the injections.

Read this blog and MAKE AN INFORMED choice. And be careful who sponsors the clinical trial studies that you believe...follow the money!

Are Search Engines Bias??

Out of curiosity and due to some recent events, I decided to try out 4 search engines to see what came up when searching for adverse events/reactions relating to Synvisc injections. Google, Yahoo and Dogpile had the SynviscSurvivor blog either on the first or second page, yet on Bing/Microsoft...it never showed up after 10 pages, so I stopped.

I took it one step further and searched "Synvisc Survivor". Google, Yahoo and Dogpile both had this site as number one, as they should since it's a perfect match. I searched "Synvisc Survivor" on Bing/Mircosoft, and this site NEVER showed up! I searched "Synvisc Survivor Blog", and after 10 pages, I stopped. I even searched the exact web address...and this site didn't show up on it's own. But I did see where others have graciously posted this web address for seeking and hurting people to "get informed", and that's a GOOD thing...at least until someone deletes them, as noticed on popular knee forum full of gurus this past week.

Thank you to those who really care enough about other's health! And thanks for making a REAL difference in the lives of others.

So it seems that where you search for information does matter!

***

Opinions expressed here are strictly that of the poster who suffered tremendously from Synvisc injections. These opinions are not meant to replace medical advice, diagnosis or treatment. Seek a QUALIFIED naturopath for advice and help, or a physician who seeks truth! Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on SynviscSurvivor. SynviscSurvivor does not endorse any specific product, service or treatment, yet will share what helped them if asked privately. If you think you have a medical emergency, call your doctor or dial 911 immediately

FDA Adverse Event / Side-effect Report 6 -- Synvisc (H-G 20)

The FDA MAUDE site still fails to show descriptions such as the following relating to Synvisc injections or any other medical device as of late Sept 2009. As a person who went from INCREDIBLE health to barely surviving and hanging on the last 2 years DIRECTLY FOLLOWING SYNVISC injections, these event descriptions are TOO important to keep to myself. People need to know what COULD happen if they consent to Synvisc injections. And the probability is historically HIGH that Genzyme, your injecting physician and other physicians will NOT be on your side if something goes wrong. Had I known this information prior to my consent, the last 2 years of my life would've been MUCH healthier and productive...and there are many who've contacted me privately who experienced the same! Take HEED before you consent to this product, and do your research before you consent to ANY DRUG or MEDICAL DEVICE. Unfortunately the FDA just made it more difficult by removing the event descriptions from the reports. Contact your US representatives and the FDA [1-888-463-6332] and let them know that this is NOT OKAY.

Here are some FDA MAUDE site reports that I have in my files.

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Event Date 12/06/2007
Event Type Injury Patient Outcome Hospitalization;
Event Description
Numbness of fingers and toes, chest tightness, elevated blood pressure, facial flushing. Information was received from a physician on 07/dec/2007 about a female patient, age and initials unknown, who experienced a stroke and shortness of breath after her first synvisc injection. The patient received her first synvisc injection into the (unspecified) knee during "the week of four days earlier". The patient experienced a stroke "shortly after" the injection. She was taken to the or and it was determined not to be related to synvisc. She has recovered "and is fine". The patient also experienced shortness of breath. The events were reported to have occurred on the same month. The physician assessed the relationship of synvisc to stroke as unrelated; he assessed the relationship of synvisc to shortness of breath as unknown. Additional information was received from dr. Copeland's physician's assistant on four days after the original date. She reported that the patient is a female with a medical history of osteoarthritis and an arthroscopy 1-2 years ago, on estrogen supplementation. The patient received her first synvisc injection on three days prior to original date for a dry, non-effused osteoarthritis knee. The injection was uneventful. Forty-eight hours later, the patient called the physician complaining of facial flushing, numbness of fingers and toes, and chest tightness. There was no shortness of breath, wheezing, laryngeal edema or rash. The patient had no history of asthma, or other pulmonary or cardiovascular disease. At the doctor's office, the patient's blood pressure was elevated at 160/100. The physician treated her with benadryl and depomedrol. She did not respond and was sent to the emergency room, "where she was cleared for cvx and cva. She was sent home on no medications. It was reported that over the past week, the patient has done better, off all meds". At the time of this report, it was not known if the patient had recovered.

****

Event Date 07/17/2007
Event Type Injury Patient Outcome Other; Required Intervention
Event Description
Anaphylactic shock; asthma flare; nausea; shakiness; allergic reaction; soreness of the left knee; bruising of the left knee. Initial info was received in 2007 from a female pt who is also a registered nurse, with a history of knee pain, who experienced anaphylactic shock, nausea, and shakiness after receiving synvisc. On the same day, the pt was administered the first synvisc injection of the series in the left knee. Later that day, the pt experienced shortness of breath, syncope, nausea, diarrhea, and shakiness. She went to the er and was treated intravenously with benadryl and fluids. She was discharged from the er at 6:00 pm the same day. No further info provided. At the time of this report, the outcome of the pt was unk. Add'l info was received from the pt a week later. The pt stated that she experienced an allergic reaction on original date. No further info provided. At the time of this report, the outcome of the pt was unk. Add'l info was received from the pt on the end of the same month. The pt experienced a flare of asthma, soreness in the left knee, and bruising in the left knee on an unk date. The pt was treated with corticosteroids for the asthma flare. She stated that she experienced no significant reaction in the left knee from synvisc injections. At the time of this report, the outcome of the asthma flare was not yet recovered and the outcome of the soreness and bruising of the left knee was recovered. No further info provided.

****

Event Date 05/01/2007
Event Type Injury Patient Outcome Other; Required Intervention
Event Description
Tongue swelling; chest pain; throat swelling; not sleeping; ankle swelling; hives all over body; swelling in hands. Information was received on 14-may-2007 from a female patient with a medical history of osteoarthritis, who experienced tongue swelling, chest pain, throat swelling, not sleeping, ankle swelling, hives all over body and swelling in her hands after receiving synvisc. The patient received her first injection of synvisc on nineteen days earlier. Thirteen days prior to original date, the patient had ankle swelling. On the following day, the patient received the second synvisc injection. On two days later, the patient started to experience hives all over her body, throat swelling, tongue swelling, chest pain, not sleeping and swelling in her hands. The patient was treated with prednisone, zyrtec and atarax. At the time of this report, the patient had not yet recovered.

****

Event Date 01/01/2004
Event Type Injury Patient Outcome Hospitalization;
Event Description
Collapsed, head injury, broken nose, fractured right cheekbone, sweating, fast heart rate, extreme pain related to the injection, felt flushed. Information was received on 1/26/07 from a male patient via a sales representative regarding himself, with a medical history of osteoarthritis, who experienced a collapse, head injury, broken nose, fractured right cheekbone, sweating, fast heart rate, extreme pain related to injection and felt flushed. The patient began treatment with synvisc on an unspecified date about 3 years ago (2004). The patient received three injections into the right knee on unspecified dates about 3 years ago. On unspecified dates about 3 years ago, the patient experienced extreme pain related to the injection in his right knee following each injection. The pain after the third injection in his right knee was much worse. Shortly after the third injection while leaving the doctor's office, he experienced a fast heart rate ("his heart was pounding"), sweating, felt flushed and collapsed. He fell to the floor and experienced a head injury, a broken nose and a fractured right cheekbone. He had surgery to repair the injuries. The patient stated that he still had some residual effects from the fall, that can't be corrected, that he would have to live with the rest of his life, but his knee was fine.

****

Event Date 09/13/2006
Event Type Injury Patient Outcome Hospitalization;
Event Description
Systemic blood pressure increased; tingling lips; jittery feeling; tightness in chest; tachycardia. Information was received on 25-sep-2006 from a physician regarding a female patient with a medical history of osteoarthritis of the knee, who experienced tingling lips, a jittery feeling, tightness in her chest and tachycardia. In the past, the patient had a series of synvisc injections in the left shoulder in 2004, and series of synvisc injections in the left and right shoulder in 2006. The patient had received two injections of synvisc into the right knee eight months later and seven days following. The physician reported that within two hours of the patient receiving the second injection of synvisc, she started to experience tingling lips, a jittery feeling, and tightness in the chest. The patient was hospitalized on an unknown date with a systemic blood pressure of 190 and tachycardia. At the time of this report, the patient has recovered without sequelae and the physician has assessed the adverse events as possibly related to synvisc.

****

Event Date 07/28/2005
Event Type Injury Patient Outcome Hospitalization;
Manufacturer Narrative
The patient had a history of osteoarthritis in both knees for 10 years. The physician confirmed the events of "face swelled up" and "pulse was racing. " the physician was not aware of the patient's hospitalization. No causality assessment was provided.
Event Description
Information was received in aug 2005 from a pt with a medical history of osteoarthritis and previous synvisc injections in july/august 1999 and no history of allergies to chicken, eggs or feathers, who experienced voice was hoarse, face swelled up, neck swelled up, breathing difficulties, pulse was racing, felt lightheaded and dizzy. The pt began treatment with synvisc in july 2005. The pt received three injections on synvisc into both knees in july 2005 with one week interval. The pt stated that before their 3rd injection of synvisc pt noticed their voice was hoarse and two days later, their face and neck swelled up. In aug 2005, the pt had a "crisis" with their symptoms, their pulse was racing, pt felt lightheaded and dizzy like pt was going to lose consciousness. The pt stopped taking adderall at this point and since then there had been improvement in these symptoms; their heart rate and blood pressure have improved. In aug 2005, the pt hospitalized to determine what had happening and ruled out involvement of the thyroid gland. The cortisol levels came back low. The pt was released from the hosp. The pt took benadryl every night, otherwise pt had breathing difficulties and their face was still puffy. The pt had an appointment with endocrinologist to follow up on their symptoms pt had been experiencing. The pt also remembered having some type of breathing difficulties and their face was still puffy. The pt had an appointment with endocrinologist to follow up on their symptoms pt had been experiencing. The pt also remembered having some type of breathing difficulties around the time of their first series of synvisc injection in july/august 1999, but pt cannot remember whether the breathing difficulty was very close to the timing of the synvisc injections or not. At the time of this report the pt's pulse racing, blood pressure, lightheaded and dizzy had improved after discontinuing taking adderall. The pt continues to experience breathing difficulties and their face was stiff puffy.

****


Event Date 05/01/2005
Event Type Injury Patient Outcome Other; Required Intervention
Event Description
Hypersensitivity reaction, tightness in knee. Information was received in 2005 from a pt's family member regarding a pt with a history of osteoarthritis who experienced tightness in the knee and hives at various places on pt's body, some bruising, difficulty breathing and an allergic reaction to synvisc. The pt began treatment with synvisc in 2005. The pt received a series of three synvisc injections into the right knee in 2005. During the first week of the following month; the pt began to experience hives at various places on their body, and some bruising. The hives were treated with benadryl 50 mg tid and hydrocortisone cream. The treatment helped, but the hives came back if therapy was interrupted. The severity of hives had gotten progressively worse and during that same month the pt experienced difficulty breathing and went to the emergency room (er). Pt were placed on zyrtec (dose unknown) qd, prednisone 60mg as a single dose in the er and prednisone taper starting the following day at 40mg x 4 days, 30mg x 4 days, 20mg x 4 days, 10mg x 4 days, then discontinue. The pt was also prescribed pepcid (dose unknown) for stomach upset associated with prednisone. The pt's discharge diagnosis from the er was "allergic reaction to synvisc". In addition, the pt experienced "tightness in the knee" after each synvisc injection. At the time of this report, the pt's outcome was unknonw. Additional information was received in june 2005 from the pt's family member. The pt has a history of an allergy to feathers. In may 2005 the pt experienced swelling of their lips and chest tightness while being tapered off of the zyrtec tto allow allergy skin testing ("the pt needs to be off zyrtec for 4 days to allow allergy skin testing"). On an unknown date, the pt re-restarted their zyrtec 10 mg daily and the swelling on the lips and the chest tightness resolved. The pt was switched to benadryl 50 mg because they only had to be off of the benadryl for two days before skin testing could be done. In june 2005, approximately twelve hours after the last dose of benadryl the pt experienced face and lips swelling and hives cover every part of their body. Their lips "became so swollen the lips split. " on unknown date, the pt was seen in the er where they received solu-medrol by injection, benadryl by injection, prednisone and zyrtec. At the time of this report, the hives and swelling resolved. Additional information was received in june 2005 from a pt's family member who reported that the pt had a history of hypothyroidism, asthma and allergies. Family member stated that the pt's reaction was worsening, as they broke out in hives again that morning. She stated that the pt experienced bruising at times, after the rash and subsided. She noted that the allergist/hcps have hypothesized that the bruising occurs due to increased capillary perfusion subsequent to the rash. Family member stated that the pt was on prednisone and an antihistamine and was still experiencing the reactions. The pt was going to see an allergist the day of the call, but on previous attempts to taper the steroid/antihistoamine the reactions had reappeared and the allergy testing could not continue. The allergist was of the opinion that the reactions, because they were delayed, were not likely caused by synvisc. The allergist was checking to determine other possible causes. Additional information was also received in june 2005 from the pt. The pt confirmed they had a history of allergy to feathers, but they could eat eggs. The pt stated they had to go to er in 2005 because their lips were so swollen that they cracked and started to bleed, their face swelled, their eyes swelled and they had welts over their body with bruising. They stated that the reactions were getting worse over time.

FDA No Longer Includes Description of Adverse Event / Side-effects

Since I started to post the FDA Adverse Events relating to Synvisc reported to the FDA via patient and/or physician, they have since removed the ACTUAL DETAILS and DESCRIPTIONS of the events!!! They simply say "injury" or "hospitilized" or "intervention required."

Patients have the right to know what COULD happen to them if they take Synvisc or ANY OTHER drug or medical device. The FDA SHOULD be working for the people and that would mean full disclosure and description of adverse events.

I'll let you know if the FDA formate changes for the MAUDE search site and see if this changes with the "technical difficulty" declaration. I'll let you know when and if it does change.

A Synvisc Warning of a Different Kind

Things to consider if a third party insurance is paying for your Synvisc Injections, such as Worker's Compensation, Auto Insurance, Property Insurance, etc.


If you have an adverse reaction to this injection, the situation could get sticky.


One, the physician that you trusted to inject you could EASILY deny your adverse event because they are covering their own interests and possible ties to the company. [Hence the need for the Physician Payment Sunshine Act 2009 to pass!!! Contact your senator http://www.senate.gov/ ] The insurance company will JUMP at the chance to NOT pay for what could be a long lasting health issue...and very costly. None of the above will likely be invested in YOUR best interest, only their own. [unless you're really LUCKY]


Two, the insurance company will jump at ANY chance to NOT pay, even if your reaction fits the possible adverse reactions listed on Genzyme's information sheet for Synvisc. They will fight you, and unfortunately, most physicians you might be referred to don't have the balls to stand up for the patient or the TRUTH. The odds are in favor that the medical community will side with the pharmaceutical company. Odds are that they will say that you suffer from a psycological issue, or will cover it up by saying it's related to a pre-existing condition or another prescription you're taking, or that your adverse event is not related to the Synvisc injections.


Some of the above has happened to ME, and All of the above has happened to many others who have contacted me regarding their experience with Synvisc.


Do you get it?? You WILL be on your own!!!!


Again, Why take the risk?

????

Synvisc--The Suffering Minority

A forum poster recently said that you only hear from those who had a bad reaction to a drug or medical device on forums and blogs, and that the percentage of those who react are actually small.

There's some truth to what this person posted in regards to many drugs and medical devices, but I often wonder how many of the mysterious conditions today are contributed to the use of prescriptions, and are never connceted. And another troubling thing about their statement...they wrote it in a way to minimize those who seek help for terrible reactions to a drug or medical device. Through my own experience, the medical doctors administering the drug or device are of NO help, especially if it's prolonged or out of the box.

In the case of Synivsc, there's no proven way to extract the gel/liquid from the body or a known remedy in the books. They don't know the systemic half-life of Synvisc, or its metabolic pathway once it leaves the knee joint...thanks to the FDA Medical Device classification, which does not require such. So where can people who suffer find help, advice and know that they are NOT alone?

Most people invested in making money off a product are only concerned about their bottom line...not the good of the patient. [I know that statement is not true for all physicians. However, it is true for all of us who I'm in contact with who reacted to Synvisc. The FDA, Genzyme and our physicians dismissed us, and left us to fend for our own lives. That's the real bottom line you should consider... You're on your on if somethine goes array.]

I wonder if this person would minimize such reactions and reports of reactions if the drug or medical device had destroyed their health, almost killed them, or did the same to someone they love.

So I say to all of you who are suffering from a product the FDA deemed safe, keep reporting!!

How do you know if you're going to be one of the suffering minority or not?

AND do you really want toxic substances to permeate your body and add to your toxic load?

Why take the risk when there are other options without?