Sunday, June 3, 2018

It is an absolutely beautiful day, today! The sun is shining and it is not too hot; the birds are singing; and all of the plant life has burst into bloom! While I already shared my beautiful iris plant, that is double blooming like crazy, I cannot help to think that it is not the only gift that keeps on giving.

It has been many years since I my body was permanently damaged by the antibiotic Cipro. (a commonly prescribed antibiotic for bladder,  sinus infections, and UTI's) I am grateful that the reoccurring pain, due to the damage caused by Cipro, is no longer constant, and that I have periods of time, that I actually forget that it even happened, but boy, oh boy, let me tell you, when it flares back up, I am reminded just how life altering a "simple round" of the antibiotic Cipro, can be.

I believe that this latest flare is directly linked to the night of dancing, a week ago. It was the third time that I had been dancing since my shoulder surgery, and since my pleural effusion has improved, due to a change in leukemia medications, and I am sure that I just over did it. My heart and soul,  just do not know when to say, when! lol

The nerve pain in the bottom of my feet began as soon as I stepped out of the car; after arriving home. I was a bit annoyed, yet hopeful that it would be gone by morning; of course, as my luck would have it,  that did not happen. The nerve pain has just continually gotten worse, and I am hobbling, with every step.

Two days ago, the nerve pain started traveling up the back of my left leg; It is so severe that it makes, sitting, standing or lying down miserable. Ibuprofen seems to bring some relief and today I am trying heat. UGH!

My reason for sharing this information is purely,  to warn you; warn you against taking the risk of ending up with side effects from an antibiotic (Cipro or Levaquin or any florquinolone)that may be permanent. I swear I would not wish this pain on anyone; it SUCKS!

I know that it is very hard to believe that an "antibiotic" can cause permanent nerve, tendon and muscle damage, to name a few,  and I know that most medical professionals just do not believe the severity of the side effects, or the number of people damaged by them, but what I can tell you, from my personal experience, and from speaking to others who actually realize where their unexplained pain has come from, is that it just is NOT worth the risk.

For those of us that have been damaged by this class of antibiotics, we know how life altering, that decision has been, and I know we all wish we had been "warned", or at least counseled, like the Black Box Warning states. (this rarely happens)

I know that people probably think I am a bit obsessive about this subject, but every single time I am physically reminded how my body has been destroyed, I want to save others from the same fate.

I believe in my heart of hearts, that a large number of people that have tendon tears and ruptures, and others that are diagnosed with Fibromyalgia, are actually suffering from Cipro or Levaquin side effects; sad, but true. I believe that the FDA recorded number of cases, is grossly under reported, as I believe that few actually correlate their pain, and/or tendon ruptures to an antibiotic that they are currently taking, or have taken in the past.

If you suffer from unexplained pain, or tendon ruptures, or any of the side effects listed below, delve into your medical history and see if you have taken Cipro or Levaquin. Best case scenario, is to avoid it, unless it is your LAST drug of choice!

Side effects include, and are not limited to: (remember, some of these may be permanent)

Swelling or inflammation of the tendons
Tendon rupture
Tingling or pricking sensation (“pins and needles”)
Numbness in arms or legs
Muscle pain
Peripheral neuropathy (nerve damage)
Suicidal thoughts
Abnormally rapid or irregular heartbeat
Ringing or buzzing in the ears
Vision problems
Skin rash
Sensitivity of skin to sunlight
Worsening of myasthenia gravis
Aortic aneurysm
Aortic dissection

On a side note; as I was looking for the side effects of these antibiotics, I was FLOORED to see  how  "hidden" the possible permanent damage is, on the internet. You really have to dig, or search; Black Box Warning. Truly unbelievable, and absolutely infuriating.

At this point, who is responsible? The pharmaceutical company? The prescribing physician? The pharmacist? Or the person who trusts, all of these people?

Related Links:

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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