Friday, November 8, 2013

Was Sprycel Keeping My Peripheral Neuropathy at Bay?

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In April of 2010, a little more than three and a half years ago, I suffered extreme side effects from an antibiotic called Cipro, also known as Ciproflaxin. This antibiotic is in a class of antibiotics called floroquinolones; Levaquinn and Avelox are also in this class of antibiotic. Apparently in 2010 there were over 20 million prescriptions written for Cipro, and its’ popularity has increased.

Cipro was designed as a powerful, last drug of choice, antibiotic to be used in extreme bacterial infections that did not respond to prior treatment; it has become a first choice antibiotic for many, many physicians and dentists, despite its’ Black Box Warning status.

So, what’s the big deal? It’s an antibiotic, right? All antibiotics come with some risk and side effects, right? If you’re sick, you need an antibiotic, right? While all of these answers may be “yes” I will tell you what three doses of this antibiotic have done to me; they have apparently caused a permanent, peripheral neuropathy; with my feet being the hardest hit.

I suppose that I probably take in excess of 10,000 steps each and every day; imagine excruciating pain every time that you put weight on your foot; that is 10,000 jolts a day. And imagine that after you experience the jolt, your feet just throb in between each jolt. That is what Cipro did to my feet. I had/have many other issues as well, but my feet are my greatest challenge.

Fast forward eleven months from my second floxing; I was diagnosed with chronic myelogenous leukemia. During my initial treatment I received a chemotherapy drug called Cytarabine. Within days of receiving these chemo treatments, my foot pain began to subside; eventually it became almost non-existent. I began to be able to walk normally and I began to be able to use and bend my toes, my knees and my hips without pain. I was ecstatic! I had found a golden lining to having leukemia; my daily pain was much improved; I began to move, and dance like my old self. To me it was miraculous; to the doctors, they simply shrugged and said that they often heard that people’s RA and other peripheral neuropathy improved after chemotherapy.

I cannot tell you how happy and excited I have been without this daily pain. I was released from the hospital and began a daily medication called Sprycel. Sprycel is a drug used to treat CML. Apparently it also has kept my peripheral neuropathy at bay, because for two and a half years, my pain level has remained stable.

That is until I developed pleural effusion, a side effect of Sprycel, and had to stop my treatment for three weeks until the PE resolved. During this time, the pain in my feet has returned. It began slowly but has continued to progress; it is depressing and I swear I would go in and have a round of chemo if I knew that it would help. I am hoping and praying that by resuming my Sprycel treatment the pain will begin to subside once more, but I also wonder if the Sprycel was strong enough to hold the peripheral neuropathy at bay, but not strong enough to stop it. 

Something to ask at my next doctor's appointment....

Monday, September 30, 2013

Sprycel Vacation: The Good, the Bad and the Ugly!!

Interestingly enough, I have noticed many different things that Sprycel does, and doesn’t do, to my body. After a nearly three week vacation, it has been difficult in some ways to return to my CML treatment, but comforting and even helpful, in others.

The major disappointment in returning to treatment is my missing “spark”; Sprycel seems to have a way of diminishing my inner “happy” glow! I know that sounds silly, and I am still an extreme optimist, but the bursting-over joy, that I have when I am not on Sprycel, just is not the same. This coupled with the fact that when I am not on Sprycel, the leukemia has an opportunity to kick start its engine.

That being said, there is a comfort to returning to the battlefield. The most difficult part being the return of the side effects; I have suffered greatly from muscle spasms in my back, am extremely tired, and once again, my hair is starting to fall out! Ugh, it was finally beginning to grow again. The afternoon, flu-ish, fever-y feeling has returned, along with the headaches.

The Good news is that the peripheral neuropathy, from the Cipro damage, is beginning to subside again. I still cannot believe how taking Sprycel keeps the pain in my feet, and joints in my legs, at bay. I suppose this really is the golden lining to living with a chronic cancer; totally strange!

My belief and hope is that it will not take as much time, as it did when I first began taking Sprycel to adapt to the medication and for the side effects to seem less severe. I often wonder whether the side effects actually lessen, or if we just learn to better adapt to them.

What do you think?

Wednesday, September 18, 2013

Peripheral Neuropathy, from Cipro, Returned; Not Good!

As many of you may already know, four and a half years ago, I suffered severe side effects from an antibiotic, in the floroquinolone family, called Cipro. The first time it happened, I suffered a ruptured tendon. I did not correlate the ruptured tendon to the antibiotic, Cipro.

Eleven months later, I was nearly crippled by the drug. I was given it a second time for a urinary tract infection; I took five pills and my body was destroyed. I mean literally destroyed; I suffered from the worst pain I have ever felt, in my entire life. It was mostly located in my hips, legs and feet. The pain was constant, excruciating, and never subsided. This time I DID realized that it was caused by Cipro.

I also suffered from light sensitivity and total brain fog. This is not something that you would wish upon any one, not even your worst enemy. There is no way to reverse these side effects and doctors simply shrug their shoulders when presented with a floxed patient.

Oddly enough, I suffered with this destruction and peripheral neuropathy, right up until I received chemotherapy treatments, after being diagnosed with CML. Oddly enough, there is something in the chemotherapy that can reduce symptoms in RA patients, and now I have experienced the same thing; pain relief. I was ecstatic and figured that this pain relief was the golden lining, in having leukemia.

Fast forward two and a half years; the peripheral neuropathy and the light sensitivity have improved drastically, although I cannot say the same thing about the brain fog. All was well until I developed pleural effusion and bronchitis last month; I had to go off of my Sprycel treatment, until my lungs were functioning properly, again.

 Within ten days of ceasing the Sprycel, the peripheral neuropathy began to return. I started getting extreme pain in the balls of my feet and toes, (my hardest hit area), skin sensitivity and the feeling that my Achilles and other tendons could rupture if I was not careful. I was horrified and angry. It really makes me ponder the correlation between the peripheral neuropathy and the TKI’s, as well as the chemotherapy; AND just how damaging this class of antibiotics, really are.

Moral to the story; I am actually blessed to have CML because living with that sort of pain is truly unbearable. It literally made me wish I would die; I would rather have cancer than the pain associated with the damage from those drugs. How sad it that?

In my opinion, unless it is an absolute, last resort, life or death situation, the floroquiolone, antibiotics Cipro, Levaquinn and Avelox, should be avoided like the plague!

Tuesday, September 10, 2013

Living in Chronic Pain? Create Your Own Brief History

Recently I was talking to another CML buddy about my pleural effusion. He has also suffered from pleural effusion as well as many other side effects, which many of us deal with, too. I thought that I was pretty darn good at keeping tabs of my medical issues and records, but when I saw his “Brief History” I was very impressed.
He actually encouraged me to start my own brief history quite some time ago, and I am not really sure why I never got around to it. Now, I have to go back through my “thick” medical records that I DO have, and create a wonderful “Brief History”, like his!
I would encourage each and every one of you to do the same; even if you don’t go back to your diagnosis, you can begin documenting your important data now, as we all will be managing and living with CML, for the rest of our lives.
My friend has kindly allowed me to share his Brief History, with you, as an example.

DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for AF...still had frequent episodes
Q PCR bone@ MDA…0.17 on 7/09
Acute Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood @ Baptist…undetected-7-29-09 !
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash treated with Steroids..improvement
Rash worsens~9/22/09
Stopped Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased FLecainde..1, 2x/day
Q PCR bone @ MDA..0.07
Stopped Alcohol…no AF, ½ Flecainide 2x/day
Q PCR Blood @ Baptist…Non Detectible-12-13-10
Q PCR Bone @ MDA..0.01--2-25-11
Q PCR Blood @ Baptist…Undetectible-5-19-11
Reduced Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction
Pleural Effusion clear 12-21-11
Started Sprycel 70mg/day..12-23-11
QPR bone @ MDA.. <0 .01...2-16-12="" span="">
Started Sprycel 50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid Dose pack to alleviate:.still on 50mgs
Change to 20 mgs/day Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR Blood @ Baptist-Undetectible-6-13-12
Neuropathy moving up legs, some weakness noted--12
Q-PCR Blood @ MDA..<0 .01="" span="">
Q-PCR Bone @ MDA…<0 .01="" span="">
Q-PCR Blood @ Baptist….Undetectible..6-19-13

Wednesday, September 4, 2013

FDA Announces New Black Box Warning!

Apparently there has been a change to the Black Box Warning for Floroquinolones. The FDA announced on August 15, 2013, that fluoroquinolone drugs such as Levaquin, Cipro and Avelox will be required to change packaging inserts to contain a warning for severe, permanent and disabling peripheral neuropathy. The FDA states that the damage may occur very soon into the administration of the drugs and the damage may be permanent.

If you are wondering what peripheral neuropathy is, this is the description from the FDA: Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped, or even be permanent.

Permanent: I cannot even imagine the pain that I suffered during the first two years, after being floxed, lasting forever. I swear that I would have jumped in front of the bus, if I had not begun to see a slight decrease in pain, during the first six months. This pain relief was minuscule, yet gave me hope.

I am telling you that the pain was the absolute worst pain, I have ever experienced. It is not like a cut or a bruise, it is not like a broken bone or a migraine; it is like you are walking on burning glass. It is constant and never subsides; even the air hurts the affected parts of your body.

I was unable to touch my feet or toes; I could not wear socks or shoes and could bear absolutely no weight, on the front part of my feet: for years. My hips, knees and Achilles felt as though they would burst at any moment. This pain is indescribable. Not only did I have pain in my legs and feet, I was unable to open my eyes in the morning, because of the light, for hours, and even then I had to keep the house dim. I couldn't remember things, I was easily confused and literally just wanted to sit in a dark corner and cry. The skin on my body hurt to the touch and wearing anything other than really, really soft material, was excruciating. This is not something I would wish on anyone!

There was not a doctor, or pharmacist that had any advice on how to control the pain, or if it would ever go away. The only person that gave me any sort of advice on how to try and detoxify my body, and rebuild the damage was Dr. Leland Carroll; a chiropractor. I believe that it is with his help, my persistence and a round of chemotherapy, (due to my leukemia diagnosis) that I am much improved. It absolutely floors me, that once you have suffered the toxicity of these drugs, that there is absolutely no protocol on how to stop, or reverse the damage. No one can tell you that someday, you MAY get better.

I will bet you that the orthopedic surgeons that are repairing torn tendons and the Fibromyalgia doctors that are treating tons of patients with chronic, unexplained pain, are thanking these drugs; all the way to the bank. You can bet that they never even ask their patients if they have taken a floroquinolone. This is disturbing and unconscionable.

I am certain that many physicians are completely unaware of the Black Box warning placed on fluoroquinolones in 2008; and I am certain that most have never seen the outcome of those of us that have suffered these side effects. Probably the biggest reason for this, is simply the lack of correlation, to the pain and the antibiotic; not many figure out what has caused their pain, therefore, it goes unreported. 

Fortunately, the internet is bringing these issues to light, and hopefully our voices are being heard. We need to report these side effects to the FDA and the drug companies, and once made aware of the risks, we must refuse this class of antibiotics, unless there is no other choice. Trust me, you do not what to take the chance, that you will become the next victim.

I do not believe that any doctor or dentist would knowingly prescribe an antibiotic that is so dangerous; unless they were completely unaware of the consequences, or there was no other option. I also understand that all drugs come with their own list of precautions and warnings, risks and side effects. These must be carefully weighed; and you must decide if the result, outweighs the risk. Believe you, me; if I had had a choice of diarrhea or a rash, over being crippled and in chronic, extreme pain, I would chosen the diarrhea or rash; every time. Usually, there are alternative antibiotics, but you must ask.

I believe that it is the pharmacist's responsibility to inform a patient of the Black Box Warning, prior to filling the prescription; I know that this was not the case on the two prescriptions that I filled. What good is a Black Box Warning if no one knows about it? Education is key here, for physicians and pharmacists, not to mention the patient, We, as patients need to take these warnings seriously.

Thanks to the internet, the dangers of Cipro, Levaquinn and Avelox are finally getting the wide spread attention they deserve.There are petitions and lawsuits, and there was even a march on the capital lawn, in Washington, bringing awareness and looking for retribution for victims. Victims are tired of being victims and they are realizing that they really are not just one in a million, but one of many. 

Do not fall prey to the antibiotics Cipro, Levaquinn or Avelox; it is not worth the risk. If you have suffered peripheral neuropathy you may wish to contact the Floroquinolone Victims Advocacy Network. 
New class action suits are being prepared.

Monday, September 2, 2013

Black Box Warning: May Cause Permanent Nerve Damage

I have been harping on this for years! So glad that it is finally getting the attention it deserves! I truly believe that thanks to the internet, people are not only becoming more informed, they are also sharing their experiences, finding similarities and putting two and two together.

The over "abuse" and "over-use” of this class of antibiotics puts me into a rage; I cannot believe that they are so freely prescribed when in truth, Cipro was originally "designed" to combat Anthrax. It is a powerful antibiotic, that when used as prescribed; as a "Last Drug of Choice", can be lifesaving.

When over used and abused to treat UTI's, kidney and sinus infections, the medical field is inadvertently creating an entire population that will learn what it is like to live in severe, chronic pain; some of these people will be crippled for life, others will just require surgery to repair torn tendons and ligaments.

I certainly wonder how many people have been diagnosed with Rheumatoid Arthritis or Fibrolmyalgia or had an unwarranted Achilles tear that are actually suffering from the side effects of these antibiotics; without ever realizing it, I mean who in their right mind would ever think that an antibiotic could cripple you? When you think of a reaction to a drug, you think, stomach ache, diarrhea, rash, can't breathe, not: "I cannot walk."

People are often given these drugs prior to dental work, or after developing a fever, following surgery. 
Many of these people begin to experience extreme pain and have no idea why. Typically they go to a doctor who typically prescribes a cortisteriod, or cortisone, which inadvertently exasperates the damage done by the antibiotics. Of course, the doctor does not ask if the patient has possibly taken a floroquinolone; which would explain the extreme pain; and hopefully change his plan of attack.

Even orthopedic surgeons that repair all of these tears rarely ask whether or not a patient has taken this class of drug; they do not care about the "why" an injury happened. I often wonder how many top athletes injuries are caused by these drugs. Kidna' like Kobe Bryants; “I didn't do anything I haven't done thousands of times before" maybe he had recently taken a floroquinolone.

Of course, then these same people have more dental work and the cycle continues. These drugs have DESTROYED my mother's life and body. It wasn't until a few years ago that I actually put two and two together, and yes, she had seven, almost empty bottles of Levaquinn in her medicine cabinet. I was infuriated and stunned!

Anyway, it is with the birth of the internet and the grace of all who have shared, as well as have searched for "cures" that the damage that these drugs can cause, is now becoming more recognized. I implore each and every one of you to read the following information and to store it in your memory bank. The pain that these drugs can cause is excruciating, and may be permanent.

Posted Wednesday, August 28, 2013 at 11:03am EDT
Certain antibiotic drugs cause permanent nerve damage. Here is what you need to know about the risks and what you can due to help your body heal naturally.

Black Box Warning: May Cause Permanent Nerve Damage

A certain class of antibiotics have been issued a new black box warning because they cause serious nerve damage. Black box warnings are the most serious and often deadly side effects of drugs that are literally outlined in a black box on the package insert. Fluoroquinolones, such as CiproLevaquin, and Floxin were prescribed to over 23 million people in 2011 alone. They are commonly prescribed for respiratory and urinary tract infection. These are relatively simple conditions that have many natural and safe treatment alternatives. However, antibiotics are one of the most commonly prescribed drugs in America. Those hoping to find health from a pill are in for a very serious and very dangerous surprise.  These drugs cause peripheral neuropathy within a few days of starting the medication. The nerve damage may last for months or it may be permanent even when the drug is stopped. They do not cause this nerve damage in every person who takes them; however, you are playing Russian Roulette every time you take most prescription drugs. You may be the one who is permanently affected. Is it worth the risk simply for a possibly quicker recovery from an infection?
Peripheral Neuropathy Explained
Peripheral nerves are nerves that run from your spinal cord to every muscle and organ in your body. They are the lines of communication between your brain and the rest of your body. Neuropathy is a general term referring to nerve damage; nerves that no longer work properly.
While peripheral neuropathy is commonly diagnosed in the arms and legs because those areas are easier visualized, it also occurs in the nerves that control your organs. Pain and numbness are common early signs of peripheral neuropathy in the arms or legs. It then progresses as muscle problems such as weakness and loss of muscle control.
Ever wonder how something as simple as an antibiotic can cause death? One of the many ways is their effect on the autonomic nervous system – nerves controlling the organs that keep you alive. Peripheral neuropathy nerve damage affects these nerves as well. This causes problems with digestion, heart problems, breathing problems, and kidney and liver dysfunction. Ultimately, this can lead to death due to organ failure.
Other Side Effects of These Antibiotics
This particular class of antibiotics also carries another black box warning issued by the FDA in 2008. That warning was for sudden rupture of tendons, the tissue that connects your muscles to your bones. As if this two side effects are not enough, antibiotic drugs, like Cipro, have pages and pages of additional side effects from allergic skin reactions to deadly anaphylactic shock. Antibiotics also cause deafness in infants, children, and adults alike. Cipro causes sensitivity to sunlight that makes it difficult to be in direct sunlight. Of course, this reduces your body’s production of Vitamin D, further weakening your immune system, which allowed the infection to develop in the first place!  We could go on and on about the various, dangerous effects of antibiotic drugs. However, I think that we have already covered enough ways that they can kill you. See for more.
Healthy Alternatives to Antibiotics
If you have a bacterial infection, what can you do to heal without the potentially deadly side effects of antibiotic drug treatment?
1. Wait it out.
While most infections are not pleasant, they usually pass with few problems and no permanent damage.
·         Side note: Your child’s pediatrician may have told you that certain infections may cause deafness in your infant child if not aggressively treated with antibiotics. The truth is that there is no research comparing the risks. There is, however, ample research documenting that aggressive antibiotic treatment does cause deafness in infants. The vast majority of cases of deafness associated with childhood illnesses are in those who were treated with high doses of antibiotics.
2. Get some sunshine.
Vitamin D is a strong immune system supporter. Adequate vitamin D levels are essential for a healthy immune system. Your body’s only natural source of vitamin D is sunshine. If you are in an environment where this is not possible, it is easy and inexpensive to supplement your diet with vitamin D3.
3. Eat more Antimicrobial foods.
Many foods are designed with the natural ability to kill off dangerous bacteria. These include Coconut products like coconut oil, coconut milk, and coconut butter; raw, unpasteurized honey; and vegetables such as garlic, onions, and cabbage.
4. Eat fermented foods.
Raw, fermented foods, such as raw sauerkraut, raw pickles, and cultured vegetables contain probiotics that strengthen your body’s normal immune response.
5. Consume antimicrobial herbs and spices.
Many herbs and spices have antibacterial properties. A few antibacterial heroes in this category are turmeric, ginger, and chili peppers.
6. Exercise in short, quick bursts.
While an infection may cause you to feel tired and rundown, exercise – especially in short bursts – actually increases your energy levels and stimulates your immune system to speed natural healing.
7. See your chiropractor.
Stress on your nerves weakens your immune response drastically and increases your risk of most infections from UTIs to the flu. Receiving chiropractic adjustments regularly – especially when you are sick – removes this nerve stress and dramatically increases your rate of healing.
The best thing about these natural alternatives to antibiotics is that none of them will kill you and they will actually make you healthier!  Including all of these as part of a wellness lifestyle creates a strong, disease-proof body that has no need for antibiotic drugs.
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