http://www.facebook.com/groups/46690244194/10151308534929195/?comment_id=10151309151499195¬if_t=group_comment_reply
What Helps - Primer for New Floxies #1
The following are general recommendations for persistent adverse drug reactions (ADRs) to Fluoroquinolone (FQ) antimicrobials. (Suffering FQ long-term ADRs is informally called "floxing".)
SUPPLEMENTS:
* Most people who do not have kidney problems benefit from a magnesium supplement of 250 mg - 450 mg or so a day. Be aware magnesium like many metals becomes toxic at a relatively low multiple above its Recommended Daily Allowance.
* Supplements of vitamin D3 and of B complexes are also widely supported.
* Probiotics, especially refrigerated probiotics at health food stores, or yogurt with active cultures are valuable to prevent antibiotic-associated diarrhea including from Clostridium difficile overgrowth.
* Many people try many other supplements and don’t let this stop you, but there have been excesses ending in hospital visits or making the situation worse. So do be careful.
MEDICATIONS:
* Medium to large doses of steroids like cortisol, cortisone, and prednisone (technically “corticosteroids” or “glucocorticoids”) in all non-inhaled administrative routes – creams (topical), pills (oral), and injections (parenteral) – dramatically worsen or bring back tendon problems, and also worsen nerve pain and joint pain; their damage may be worse than the original FQ symptoms and lasts months to years. I'm not a doctor and can't tell you what to do, but I can tell you that I write a special note on my doctor forms "adverse reaction to steroids" near the allergy section. This adverse effect applies for a minimum of 5-10 years post FQ ADR onset. The only exceptions are a few people (~10% - 25%), with the discriminator(s) for corticosteroid tolerance being unknown. Those who are already taking and tolerating glucocorticoids derive benefit and need not stop, but stories from those who did not tolerate them emphatically suggest avoiding experimentation for those who have not yet tried. Inhaled steroids are larger molecules with low systemic absorption when used sparingly and appear mostly safe; asthma sufferers may consider spacers or DPIs. Other common drug names: hydrocortisone, prednisolone, dexamethasone, and betamethasone. The academic literature agrees with the recommendation of avoiding steroids in FQ induced tendinopathy, (e.g. Damuth et al 2008, PMID 19161929).
* Having had an adverse reaction to fluoroquinolones, you should not take fluoroquinolones or quinolones again for the rest of your life as the medication insert states. This list includes Cipro, Levaquin, Avelox, Floxin. It is undetermined but possible reactions might also occur from the synthetic quinoline anti-malaria drugs chloroquine and Lariam (mefloquine), though Plaquenil (hydroxychloroquine) appears to be usually tolerated. Your next FQ exposure will always be much worse than your last. I'm not a doctor and can't tell you what to do, but I can tell you that I write a special note on my doctor forms "adverse reaction - fluoroquinolones" near the allergy section.
* Regarding Eye drops and Ear drops, permanent vision loss has been reported from use of the fluoroquinolone eyedrops in those sensitive to oral FQs. FQ eyedrop and eardrop drugs have generic names that end in the suffix “-oxacin”.
* The Neuropathy Association advises neuropathy sufferers to avoid:
chemotherapies, amiodarone, chloramphenicol, chloroquine, colchicine, dapsone, disulfiram, ethambutol, fluoroquinolones, isoniazid (INH), linezolid (Zyvox), Flagyl (metronidazole), Macrobid (nitrofurantoin), nitrous oxide (laughing gas), nucleoside analogs (zalcitabine ddC), stavudine (d4T), didanosine (ddI), procainamide, phenytoin (Dilantin), statins, tacrolimus (FK 506).
Another list may be found here:
http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/toxic/drugs.shtml
ILLNESS AND EXERCISE:
* Illnesses trigger flare ups that last days to weeks, affecting at minimum tendon, joint, muscle, and nerve pain. Also affected are “brain fog” symptoms, including short term memory deficits, confusion, and lack of coordination. Sometimes minor common colds do not cause flare ups.
* In all but moderate reactions, exercise beyond personal physical limitations causes next day body wide fatigue.
* Weather related storms and temperature changes can also cause exacerbations in many. A common manifestation is joint pain, neuropathic pain, or muscle twitching exacerbated by storms and cold weather. Cold weather also affects poor peripheral circulation and feelings of being unusually cold.
EMOTIONS:
* Emotions of anger, stress, fear, and hatred will make your symptoms worse as will sleep deprivation. Their correlation with cortisol release has not gone unnoticed. This trend also applies to other chronic pain syndromes.
* Emotions of love, laughter, relaxation, and a sense of humor tend to diminish symptoms.
FOODS:
Percentages in this section are based on a Feb 2011 survey of FQ-induced, long-term ADR sufferers. Of 131 respondents, 63% reported a problem with at least one type of food making their symptoms worse, but any given food only affected a minority overall (sometimes a large minority). Stated alternatively, development of food sensitivities is common, but each person's food sensitivities differ from another’s.
* Most people can eat just about anything after a few months or a few relapse-remission cycles.
* Caffeine and coffee triggers a day of anxiety, insomnia, and panic attacks (CNS symptoms) in about 51% of those already experiencing such symptoms. Sometimes neuropathy is also aggravated. Sensitivity typically disappears between 3 and 9 months. Some may have trouble metabolizing caffeine (feels like a jittery overdose) for about as long. Overall 35% are in some way affected.
* Sugar in large amounts (e.g. a large soda or dessert) exacerbates certain CNS and PNS symptoms for 38% with neuropathic pain, vision disturbances, or muscle twitching, but also popping/crackling joints. Depending on an individual’s age and digestive system, large amounts of sugar or certain types of sugar potentially feed any bad bacteria in the digestive tract. Overall 30% are in some way affected.
* Soy triggers 2-5 days of up regulated pain in 23% or more. Nerve, tendon, and joint pain effects are reported. Soy lecithin is used in the fabrication of many supplements and pills. Males are affected disproportionally. These symptoms do not resemble soy allergy, and the shear commonality of this makes it unlikely to be related to food allergies, though the only person reporting a soy allergy blood test, which came back negative, did not have flare ups from soy. Note: The author believes difficulty in removing soy-derived ingredients (lecithin, mono- and di-glyceride, etc.) for testing leads to under-reporting and up to 35% could be affected.
* Those with endocrine abnormalities (non-thyroid) post-FQ exposure are more likely to react to caffeine, sugar, and soy.
* In early months, alcohol sometimes exacerbates peripheral neuropathy (especially heat and buzzing), joint pain, or joint stiffness for a couple days.
* Less commonly reported are sensitivities to dairy; and in those predisposed, fibromyalgia triggers of artificial sweeteners, carbonation, and MSG. Sensitivity to MSG most commonly triggers headaches and difficulty focusing, beginning from a few hours up to 12 hours afterward and lasting for 24-48 hours.
* Gluten has been reported to perpetuate joint pain in a proportion, with gluten-free periods ranging from 24 hours to 3 weeks yielding substantial pain reduction; less commonly other symptoms are affected.
* The safest animal protein sources have historically been beef, organic eggs, wild caught fish, organic chicken (except Whole Foods stores have medium safety). The U.S. food supply is becoming increasingly safe through the 2010’s. The vast majority are unaffected by these.
* The relatively least safe animal protein sources have historically been foreign sourced meats, farmed fish, and bottom feeders like shrimp and mussels.
* Exposure to unsafe meat brings back CNS and PNS symptoms within hours, lasting around 7 days to several weeks.
* The cause of food sensitivities/intolerances is unknown; the symptoms do not resemble typical allergy (IgE mediated type I hypersensitivity) but several appear consistent with Type II or Type IV hypersensitivity.
PERIPHERAL NEUROPATHY:
The term “Peripheral neuropathy” refers to neuropathy affecting locations outside the central nervous system. One way to classify neuropathies is by the site of their effects: sensory affect sensations, motor affect muscles, and autonomic affect regulation of internal organs. In medical terminology, FQ neuropathy is a polyneuropathy with characteristics that are: acute-onset, non-length-dependent, symmetric, with cranial nerve involvement, predominantly sensory and autonomic but with minor motor involvement, “idiopathic,” small fiber, predominantly without large fiber involvement. (Idiopathic means 'of unknown origin'; for this syndrome, an idiosyncratic drug reaction to fluoroquinolones is the common origin, and given increasing number of cases seen and acknowledgment in the PDR, more and more doctors are recognizing it.) The pathogenesis (mechanism of disease process) is not understood.
FQ-induced sensory neuropathy most commonly affects legs to feet, forearms to hands, the face, teeth & gums, and head. The sensations it produces feel like any one or more of: tingling, prickling, pins & needles, numbness; bugs running on the skin, moving fabric, water trickling down; burning; deep stabs, electrical zaps; buzzing; or a sense of pressure. The neuropathy can also cause abnormal sensory response, e.g., feeling pain instead of normal touch, hypersensitivity to pain. It is typically worst at night.
When sensory neuropathy affects the face, symptoms include feelings described as “shocks” or “zaps” to the face, lips, teeth, or head. Sensory neuropathy located on the head and face is associated with feelings of squeezing or pressure extending from the back of the head to the forehead (“head pressure”); oftentimes also on the cheeks, lips (“lip pressure”), teeth, and even the roof of the mouth. The “head pressure” feelings can be triggered by excitement or exertion. Sometimes these resemble or may be a form of tension-type headache, though pressure sensations can occur without headache pain in small fiber neuropathy. Senses on the head are innervated by distinct nerves which are often affected in isolation from others; depending on the specific nerve affected, symptoms can include: abnormal smells or tastes, blurred central vision, dizziness, or exacerbated tinnitus.
The term “autonomic nervous system” refers to nerve regulation of internal organs. Sensory neuropathy may be accompanied by autonomic neuropathy creating what is called “dysautonomia” or “autonomic dysfunction”. Some symptoms in order of reported prevalence include racing heartbeat, shortness of breath, constipation with reduced gastric motility, lack of sweating or excessive sweating, urinary urgency or incontinence, low blood pressure, postural orthostatic hypotension syndrome (POTS). In POTS, lightheadedness followed by a racing heartbeat occurs with blood pressure changes when a person moves from a lying to a standing position.
Many symptoms are multifactorial. Tinnitus, dry eye, and dry mouth, and erectile problems may also occur in the absence of other neuropathy symptoms. Blood flow and edema problems in some cases exacerbate neuropathy or in other cases are caused by its effects on vasomotor muscles regulating blood flow and pressure.
Motor symptoms may occur with or without presence of peripheral sensory neuropathy symptoms. Generally, FQ sensory neuropathy is associated with contractions of small parts of a muscle individually in a scattered manner (these are called “fasciculations” of individual muscle fibers). Quivering of the whole muscle body (myokymia), muscle tightness, muscle hardness, and muscle contractures can occur without sensory neuropathy and may represent a separate rheumatologic myofascial condition. Muscle pain is associated with FQ neuropathy, but can occur without it. Weakness in lifting the foot (foot drop) and difficulty swallowing (dysphagia) are less common motor symptoms. Further work is needed to characterize which are more closely tied with sensory neuropathy symptoms and which are not.
DOCTOR TYPES TO SEE:
* The multitude of body systems affected creates a need to see many doctors who won’t have a complete picture of how your problems fit together, but here are some recommendations.
* For tendinitis and joint pain, see either a "Physical Medicine and Rehabilitation" doctor (also known as a Physiatrist) or a Sports Medicine doctor and also see a Rheumatologist. Orthopedists are usually of no value and usually deny these symptoms have a chemical cause even if the physical therapist to whom they write a referral has seen it two dozen times.
* For nerve problems, pains under the skin, anxiety, insomnia, or depression see a neurologist. Names of Peripheral Neurologists can be found at the Neuropathy Association website under “Resources” then “Neurologists” or “PN Centers”.
* For reduced or increased appetite and body temperature changes, see an endocrinologist who can order the full range of hormone tests.
* For eye problems with focusing, seeing stars, seeing floaters, etc. see an ophthalmologist, not an optometrist.
* For vascular problems, consider seeing a vascular doctor from: http://www.svmb.org/clinical_archive/find_physician.cfm
* Pain management doctors are usually of no value.
* It helps to see a doctor who has a background in pharmacology; only 47% of medical school programs include pharmacology training.
TESTS:
Finding objective measures to match the syndrome's clinical picture has long been challenging. Many sufferers are unable to obtain test results to support their symptoms. Low vitamin D, high CRP, MRI findings, low ferritin, and markers implying immune dysregulation are the most common abnormalities reported.
Typical recommended tests (per affordability) are:
(highest priority first:)
* comprehensive metabolic panel, and urinalysis.
* 25-hydroxy vitamin D.
* C-reactive protein, and ESR/sedimentation rate/Westergren, and LDH.
* ANA test.
* rheumatoid factor.
* serum ferritin.
* total testosterone and free testosterone, in both men and women.
* thyroid including TSH, T3, rT3, and T4.
* CBC with differential, lymphocyte subpanel, complement tests, total IgG, immunoglobulin G subclasses 1-4, extractable nuclear antigens, serum and urine immunofixation tests.
* vitamin B12 and B6.
* progesterone, in women.
* serum magnesium.
* MRI of joints can't walk on, if doctor agrees (MRIs tend to not show much unless joint pain is quite severe).
* EMG, NCS, skin punch biopsy nerve tests, if still having neuropathy at 3 months.
(medium priority:)
* fasting blood glucose and insulin; hemoglobin A1C.
* IGF-1, HGH.
* apolipoprotein A-1 (Apo A-1).
* cortisol.
* cholesterol.
* blood pressure and EKG, if heart rhythm is abnormal.
* vitamin B1, B3, B5, B9, if nerve pain still present at 3 months.
* brain MRI and quantitative EEG, if CNS symptoms are debilitating and last > 2 months.
* abdominal ultrasound (look for liver, kidney, spleen, ovarian lesions/cysts).
(low priority:)
* gastric emptying study.
* endoscopy.
* oral glucose tolerance test with 75 grams glucose measuring glucose and insulin for four hours (if tolerant of some sugar), if no neuropathy improvement in 6 months.
Your doctor may also want to rule out: rheumatoid arthritis, lupus, drug-induced lupus (anti-histone antibody test), Lyme disease, Sjörgren's syndrome, multiple sclerosis, fibromyalgia, mixed connective tissue disease, polymyositis, neuromyotonia (NMT, aka Isaac’s syndrome), and erythromelalgia, as well as sarcoidosis and amyloidosis (both of which can cause tendinopathy and small fiber neuropathy), depending on your symptoms.
If experiencing excessive bruising or dark blue spots under skin of limbs (petechiae or purpura), ask your doctor if prothrombin time (PT) and partial thromboplastin time (APTT) tests are advised.
For neuropathy, skin punch biopsy to count damaged small fiber nerve axons is the most reliable test for FQ neuropathic pain, particularly with sensations of diffuse pain, burning, or buzzing. If lack of sweating is experienced, a test called “QSART” to measure skin sweating response to the presence of neurotransmitters supports a small fiber neuropathy diagnosis. Nerve conduction studies that measure conduction speed to check for demyelination of muscle control nerves and electromyography (EMG) that measures muscles and nerve-muscle junctions may be abnormal in severe cases wherein reduced muscle output and muscle wasting are experienced. Unless severe and disabling, waiting 3 months before testing can increase likelihood of measurable damage on tests. In less severe cases, only the skin punch biopsy may be abnormal.
In the presence of palpitations, EKG tests are unfortunately generally normal, but show PVCs most often when not. QTc prolongation, hiccups, and heart block -- all being side effects of FQs at the time they still being taken -- are not seen.
A more complete description of some of the more common test abnormalities:
(highest priority tests:)
Very many sufferers have low vitamin D, commonly with poor responsiveness to supplementation.
C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) and lactate dehydrogenase (LDH) indicate inflammation or cell death and can justify musculoskeletal symptoms, with CRP most commonly being high during the early months.
ANA tests are often abnormal with speckled pattern (indirect immunofluorescence microscopy) or high titer numbers (ELISA) reported, particularly in women.
Less commonly than for ANA, rheumatoid factor has also appeared high for several months.
Ferritin has been found low in many sufferers including those who later developed fatigue.
Low testosterone for men is very common (up to 50% affected), but also occurs in women; FQ testosterone effects appear in animal studies; low testosterone is pro-inflammatory.
Thyroid markers are often lowered in men and women, and thyroid medications often need adjustment.
Those who go on to develop neuropathy have often reported low vitamin B12 or B6, although a fraction (~10%) with neuropathy already have high vitamin B6 levels so that B vitamin supplementation exacerbates neuropathic pain.
Complete blood counts with differential, lymphocyte subpanels, complement tests (CH50, C4, etc.), total IgG, and IgG subclass tests have often revealed abnormalities in counts of lymphocyte and CD cell types and abnormalities in ratios between IgG subclasses.
A number of women have reported low progesterone.
A number of sufferers have low magnesium for months.
MRI tests have revealed tendon degeneration, cartilage degeneration, cysts, and labral tears, but many MRIs didn't detect abnormalities unless pain was severe or range of motion was limited.
(medium priority tests:)
FQs as a class can cause dysglycemias.
High HGH or IGF-1 during the first six months has been reported by several of those with diffuse tendinopathy.
Apolipoprotein A-1 has tested extremely high for a few.
High cortisol in the first 2-3 months has been reported by a few.
Several have reported elevations of cholesterol with respect to previous tests.
Several of those with abnormal heart rhythm (cardiac arrhythmia) have found unstable high and low blood pressure as well as abnormal electrocardiogram (EKG) results.
Several other B vitamin high/low abnormalities have been reported.
Several of those left unable to work had permanent brain lesions or brain abnormalities revealed by MRI and or quantitative EEG that justified claims for Social Security disability benefits.
Liver enlargement, liver lesions, kidney cysts, spleen enlargement, spleen lesions, kidney lesions, and ovarian cysts all have been reported several times each.
(low priority tests:)
Gastric emptying studies have revealed delayed gastric emptying (gastroparesis) in several of those having neuropathy combined with constipation or slow motility.
Endoscopy has revealed stomach inflammation in several of those with nausea, reflux, and extensive food tolerance problems.
Four-hour long oral glucose tolerance tests (OGTT) using 75 grams of carbohydrates have revealed a variety of blood sugar abnormalities for several persons, such as reactive hypoglycemia and more.
FOR DOCTORS:
When talking to doctors, it might be useful to tell them what page numbers in the 2011 Physician’s Desk Reference to cross reference for confirmation that your symptoms are known FQ adverse drug reactions, hence the following table is provided:
Book: Physician’s Desk Reference, 2011, 65th edition.
Drug trade name (Generic name): page numbers describing Tendon, CNS, PNS, Arthralgia, Myalgia, Ocular adverse effects.
Cipro (Ciprofloxacin): pp. 1957 & 1959, p. 1961, p. 1959, p. 1961, p. 1957, p. 1961.
Levaquin (Levofloxacin): pp. 2710 & 2718, p. 2710, p. 2710, p. 2711, p. 2711, p. 2717.
Avelox (Moxifloxacin): p. 1942, pp. 1943 & 1944, p. 1943, p. 1944, p. 1944, p. 1944 as "abnormal vision".
Book: Drug Facts and Comparisons, 2011.
Drug trade name (Generic name): page numbers describing Tendon, CNS, PNS, Arthralgia, Myalgia, Ocular adverse effects.
Cipro (Ciprofloxacin): pp. 2150 & 2158, p. 2152 & 2159, p. 2159, p. 2152, missing, p. 2152.
Levaquin (Levofloxacin): pp. 2150 & 2153, p. 2153, p. 2151 as “parasthesias”, p. 2153, p. 2153, p. 2153.
Avelox (Moxifloxacin): pp. 2150 & 2172, p. 2153, p. 2153, p. 2153, p. 2153, p. 2153 as “amblyopia”.
NegGram (Nalidixic Acid): p. 2143, p. 2144, p. 2143, p. 2143 only as “juvenile animal”, missing, p. 2144.
Your doctor should note that the adverse reaction rates for arthralgia (joint pain) run about 4.5% more than placebo for Levaquin with at least 1% occurring after drug discontinuation, and adverse reactions of CNS and PNS symptoms run up to 2% for Avelox. On 2011 PDR page 2710 section 5.6 and on 2012 PDR page 1518 section 5.8, Levaquin is described as causing axonal neuropathy, which is not something that goes away in any short length of time.
COMMON MEDICAL SITUATION SUGGESTIONS:
* Eye Exams: Eye exam dilating eye drops have not been a problem.
* Anesthesia for Dental, Endoscopy, and Colonoscopy procedures: For local anesthesia, lidocaine with or without epinephrine is reported as okay; regular epinephrine side effects include a racing heart and some anxiety. Despite European popularity, articaine at a 4% concentration has been known to cause permanent localized injury even in non-FQ users and should be avoided. Septocaine contains articaine. Topical oral anesthetics like benzocaine are generally not subject of complaint. For general anesthesia, Nitrous Oxide Laughing Gas or the combinations of Versed + Fantanyl, Versed + Valium, or Versed + propofol are reported as okay. The American Academy of Neurology recommends against nitrous oxide gas if having peripheral neuropathy.
* Colonoscopy preparation: The laxatives MoviPrep, Miralax (polyethylene glycol), and Dulcolax (bisacodyl) have all been reported as tolerated. One suggestion exchanged is to apply Vaseline to the perianal regions before initiating laxative treatment to make cleanup easier.
* MRI: If you have an MRI that will use contrast dye, request a Creatinine blood test to check kidney function, and tell the MRI center the result. Contrast dye has no reported problems for FQ ADR sufferers, though there are people in the world with permanent injuries from some dyes. NSAID use, antimicrobial use, most drugs, dehydration, taking supplements and recent exercise all increase injury risk by increasing kidney workload when the dye is in the body. Those concerned with safety can refuse dye for a first scan, or can call ahead to MRI centers, ask the power of the MRI (either "1.5T" or "3T"), ask the dyes available, and make special requests. At 1.5T, the dye "Multihance" is safest when requested at 1/2 dose. The dye "Prohance" at 1/2 dose is safest at 3T, and has no permanent side effects reported. The dye Eovist is good for patients with elevated Creatinine to 1.9. MRI with contrast dye should not closely follow CT scan with contrast dye due to temporarily reduced renal function.
* Prostatitis is usually not bacterial, so cultures should be taken to establish origin; doxycycline for 45 days is effective for bacteria.
* UTI treatment success has been reported with: natural treatment of cranberry juice and D-mannose; prescription trimethoprim.
PAIN RELIEF AND SYMPTOM COPING STRATEGIES:
* In medicine, all treatments are probabilistic, and each individual will have treatments to which they do not respond even though others do. FQ ADR sufferers tolerate supplements and natural treatments at a much higher proportion than pharmaceuticals, but pharmaceuticals are more powerful in their effects. Some sufferers develop idiosyncratic reactions to previously tolerated medications and supplements, though those having only musculoskeletal ADRs generally do not.
* Oral anti-inflammatory medications like aspirin, ibuprofen, Motrin, Advil, naproxem, Aleve, and Celebrex (celecoxib) are often ineffective for the first few months or years after FQ adverse reactions, worsening symptoms (esp. nerve symptoms) in about 1/4 of sufferers and only helping for about as many. Use during or within 10 days of FQ use is associated with worsening of central nervous system and peripheral neuropathy symptoms. Tylenol / paracetamol / acetaminophen is a bit different in mechanism of action. Research recent to 2011 suggests NSAIDs delay normal (that is, sports-induced) tendon healing and should be used as short a duration as possible. Dozens of biopsies show normal tendinopathy, though it may last many months, loses its inflammatory components within the first few weeks. However, the healing pattern of FQ induced tendinopathy does not resemble normal tendinopathy. An individual should decide if he/she wants to use NSAIDs or not.
* For tendon pain and musculoskeletal pain, relief has been reported with: the topical prescription NSAID Voltaren Gel (only in the first few weeks on any given tendon); and with over-the-counter (OTC): ice massage; heating pads; light stretching; Tylenol / paracetamol / acetaminophen (which shouldn't be taken with alcohol); topical menthols like Tiger Balm, Icy Hot analgesic, or peppermint oil; nitroglycerin patches or 0.2% ointment applied over the tendon; kinesiology tape and ace bandages; juice of a lemon in a cup of water twice daily; and to a minor extent transdermal magnesium oil. Physical therapy has been reported helpful; however, progress does not follow the progressive healing pattern observed in normal tendinopathy. Ultrasound and TENS units sometimes help, but low level laser has generally not been of benefit. Massage is pain relieving if started gently. For Achilles tendinopathy, benefit has been reported from heel shoe lift inserts and orthotics, while those with shoulder tendinopathy report overnight pain benefit from: foam mattress pads on their beds, specialty pillows, and sleep number beds. Those with tendon pain in hands, forearms, and knees reportedly benefit by sleeping with braces on affected knees and wrists to protect from motion and pressure overnight. Shoe orthotics help those with plantar fasciitis. Techniques that may increase healing rate in those showing healing capacity include: nitroglycerin patches or 0.2% ointment applied over tendons; deep and slow gua sha performed from tendon insertion across muscle to tendon origin; ASTYM; and (again only for those showing existing healing capacity) prolotherapy and platelet rich plasma.
* For muscle pain, relief has also been reported with: cyclobenzaprine; Soma (carisoprodol); and (if started at least 10 days after stopping ciprofloxacin) Zanaflex (tizanidine). OTCS: massage; light stretching; rest; NSAIDs; resistance training for muscle hypertrophy; heating pads; icing; Traumeel ointment; kinesiology tape. Supplements: magnesium oil.
* For joint pain, relief has been reported with: NSAIDs and with fish oil at 4-6 g once or twice daily (wild caught sources recommended). Collagen supplements have not been found helpful. Reports on the effectiveness of MSM and Glucosamine supplements is mixed.
* For nerve pain, Neurontin (gabapentin) and Lyrica have been tried successfully, but there are side effects to those medications. The SSNRI Cymbalta works very well for some but is terrible for others, and withdrawal is harsh. Several consider nerve gliding performed by a physical therapist as the most helpful treatment. As OTCs: magnesium supplements are one of the most tolerated treatments albeit with mild effect; Benadryl; epsom salt baths; tennis ball massage for foot neuropathy; if good circulation present then icing and/or wearing compression socks; ginkgo biloba; acetyl L-carnitine sometimes with alpha lipoic acid (if tolerated); inositol including from juiced limes; rice protein powder. B vitamins are generally liked, but individuals may be sensitive. Alcohol, large amounts of sugar, soy, or acidic food are possible flare up triggers that vary person to person.
* For pain in general, opioids are rated highest of all treatments tried, with OxyContin having better reviews than Vicodin. Tramadol also has many positive reviews. Morphine has been tried successfully. Methadone has also been used, but its effects on memory combine with its low therapeutic window for increased danger. Now having voter approval for medical use in several U.S. states and legal status in Europe, a “leafy green plant” of the indica variety is highly regarded for treating pain and insomnia. As OTCs, Tylenol is helpful and it is an analgesic, not an NSAID. Typical chronic pain syndrome techniques help, with: strong support for warm baths enhanced by Epsom salt and for massage; moderate support for acupuncture and for tolerated light exercise at least every 3 days; and forms of meditation. An example of light exercise is aqua therapy done in a warm water pool. Level of activity tolerated changes with progression of symptoms and relapses; as a general rule, pain from exercise lingering more than two hours means it was overdone. As for supplements, there is strong support for turmeric/curcumin; tart cherries either fresh or in a concentrated tart cherry juice; and there is minor support for chlorella. Vitamin D is sometimes found helpful. Detox diets have not been particularly helpful.
* Pain medications should be started at the lowest standard dose, and then increased to the expected dose while watching for adverse reactions.
* For depression, talk therapy, connecting with others, religious practices, being around children or grandchildren, and sunlight have all been found beneficial. Studies show talk therapy is as effective or more effective for depression than medication. SSRI's Lexapro and Celexa and SSNRI Cymbalta (hit or miss) have been tried successfully sometimes with simultaneous reduction of nerve pain, but Prozac and Zoloft worsen any nerve pain. Wellbutrin has also been used. As OTCs, SAM-e has moderate anecdotal support and transdermal magnesium oil minor support. There are a number of reports of amitryptyline worsening neuropathy and some CNS symptoms, but one doctor who prescribes it suggest starting far below the intended dose and tapering up over a month would increase its tolerance.
* The most common gastrointestinal problems fall under the condition of "antibiotic associated diarrhea" which is caused by overgrowth of anaerobic and/or resistant bacteria species not targeted by FQs and affects about 20% of all FQ users. Short term success has been reported with: bananas to control diarrhea; Pepto Bismol. Long term success has been reported with: the antimicrobial rifaximin; probiotic supplements containing multiple bacterial strains especially refrigerated probiotics at health food stores; and replacing entire meals with probiotic containing foods. Probiotic containing foods include yogurt with active cultures and Kefir (a yogurt drink found in health food stores). A special restriction regarding only probiotic foods is that they should not contain inulin, maltitol, or any other sources of dietary fiber, or any sugar alcohols, which can feed “bad” bacteria. Regarding gastrointestinal symptoms, removing sugars from the diet for a few weeks is sometimes necessary. Current research indicates yeasts are always present in the digestive tract and moderately increased yeast presence after antimicrobials is a side effect of antibiotic associated diarrhea, not the cause of it. Development of thrush and need to take an anti-fungal drug is less common, affecting 3-4% of all FQ users; FQ ADR sufferers report tolerating anti-fungals Diflucan (fluconazole, more systemic) and nystatin (more local but easier on liver).
* Gastrointestinal symptoms of acid reflux, nausea, and constipation also occur and have been associated with small fiber neuropathy causing autonomic nervous system dysfunction of digestive system acetylcholine neurotransmission. For both nauseau and acid reflux, sufferers may find some relief from: avoiding acidic foods; avoiding some nightshade foods (sometimes just when cooked). For just nausea: prescription Zofran; Dramamine (dimenhydrinate); Dramamine II (meclizine); ginger; colostrum. For just acid reflux: proton pump inhibitors like Nexium (esomeprazole), Prilosec (omeprazole), and Prevacid (lansoprazole); histamine H2 receptor antagonist Zantac (Ranitidine); the supplement slippery elm bark; taking 2 tbsp apple cider vinegar in a glass of water. For constipation relief has been reported with: eating prunes; eating wheat bran; eating rice bran. OTCs for constipation: Miralax; fiber products; supplement alpha lipoic acid (which also helps with food tolerance); triphala. For bloating and gas symptoms, relief has been reported with dietary restrictions on sugar, wheat, or dairy depending on the individual.
* For insomnia, success has been reported with: Benadryl (which should only be used in short term); the supplement melatonin; Ambien; Klonopin; Valium; Ativan; Tylenol PM; Trazodone; Doxepin; gabapentin. Supplements: chlorella; hawthorn; magnesium. Success has also been reported with Hemi-Sync CD’s with binaural beats; and many other prescription and OTC methods but not as consistently with valerian. Many people found caffeine worsens insomnia while a few found alcohol, vinegar, and carbohydrates worsen their insomnia; still others found reasonable amounts of alcohol helpful.
* For anxiety, Xanax, Ativan, and Valium have good reviews, but many doctors recommend they should only be used for periods of several consecutive days to prevent dependency. OTCs: Epsom salt baths; warm milk; chamomile tea; the supplement inositol; and two juiced limes (as an inositol source) twice daily.
* Dry eye which can cause light sensitivity (photophobia), difficulty focusing, and halos can be treated by: inserting a drop of preservative-free eye drops hourly; washing Meibomian glands upon waking; holding a hot wet towel against the eyes for 3 minutes to stimulate Meibomian glands; having an ophthalmologist plug tear ducts with temporary, dissolving plugs (“punctal plugs”); prescription restasis eyedrops; protecting light-sensitive eyes with sunglasses. Specific brands recommended have included Allergan Refresh Plus Lubricant Eye Drops in Single-Use Vials, and Optive Lubricant Eye Drops for Single Use.
* Improvement of visual problems of floaters and dark black specks has been reported with the supplements bilberry and lutein and grape seed extract for several months.
* For poor peripheral circulation, relief has been reported with: heating pads to encourage vasodilation; wearing thin gloves with finger holes cut; wearing warm socks or booties; submersing limb in buckets of warm water; the combination of double dose gingko biloba + odorless garlic + pycogenol; the combination of topical prescription Minoxidil + ginkgo biloba + hot chili peppers for cayenne + flush niacin.
* Tachycardia (rapid heart rate) is reportedly worsened by stress and lessened by beta blockers, like Toprol (metoprolol), and by magnesium aspartate.
* Relief from fasciculation has been reported with various benzodiazepines (which should not be taken more than periods of a few consecutive days to prevent developing dependency), and magnesium supplements.
* Back pain relief has been reported from: TENS units; ice packs; heating pads; massage; chiropractic treatment; inflatable seat cushions for car travel (e.g. ThermaRest “camp seat cushion”); orthopedic pillows designed to raise legs for sleeping (e.g. “ortho bed wedge”); the muscle relaxant cyclobenzaprine; ice.
* For TMJ-area pain, temporary relief has been reported with: heating pads, massage for TMJ, topically applied magnesium oil (a general pain reliever), and mouth splints from a TMJ specialist.
* Dry skin has reportedly been helped by Mimyx cream; coconut oil; olive oil; and an array of other natural oils and OTC products.
* Brain fog symptoms have been reported to improve with the supplements alpha lipoic acid and acetyl L-carnitine, though alpha lipoic acid may exacerbate neuropathy for a few hours in those less than one year into ADRs, while improving nausea + acid reflux, and double vision in others. Other positively-reviewed supplements: Cell Food; Ginkgo Biloba; B vitamins.
* Improvement of fatigue has been reported with: the drug modafinil (Nuvigil); vitamin B’s (if blood tests show existing levels are not too high); D-ribose; colostrum; getting plenty of rest; thyroid supplementation that includes T3 triiodothyronine; avoiding carbohydrates. Specifically for males also having low testosterone: subcutaneous prescription hCG injection; Axiron gel.
* Male low testosterone has been successfully treated with subcutaneous prescription hCG injection; Axiron gel. Ability to achieve orgasm has been improved by Low Dose Naltrexone.
* The supplement rutin and its component quercetin (which binds to DNA gyrase like FQs) have purportedly worsened symptoms in some.
* Alternative therapy techniques leading to several days of overall feelings of improvement for a portion of so-inclined users include: autohemologous ozone IV therapy; hyperbaric oxygen therapy; glutathione IV infusions; vitamin IV infusions; Traditional Chinese Medicine bloodletting. Of those, ozone IV has the best record and glutathione the worst. Some find low-sugar diets like the Paleo diet, Caveman diet, Candida diet, or other variations helpful, which help with a diverse set of symptoms. N acetyl cysteine (NAC) was found helpful by some. Religious Faith was also identified as helpful by many. Low Dose Naltrexone has mixed reviews.
* This is a deliberately abridged summary of successes reported daily in support groups, and the best solutions may still be waiting for your discovery.
MISCELLANEOUS:
* Fluoride, lead, Lyme, parasites, and Candida yeast are not causes of this condition, though thrush (as oral candidiasis or candidal vulvovaginitis) is an infrequent, treatable consequence.
* It is unnecessary for FQs to remain in the body for new symptoms to be appearing for months afterward.
* The FQ-injured considerably benefit by joining online support groups.
* Feeling the worst location of tendon or nerve pain change location every 1-3 days is typical, and if experiencing such, join a support group even if you must use a pseudonym.
* The Quinolone Vigilance Foundation is a forming non-profit focused on research, awareness, advocacy, and finding treatments for a Quinolone Induced Syndrome. As such, it needs to be able to contact as many FQ ADR sufferers as possible to solicit for surveys and university studies. Regardless of joining other support groups, sign up for their low volume mailing list at: http://www.saferpills.org/ Not joining this announcement list is equivalent to saying “I would like all of my children to go through what I’m going through right now.”
=====================================================================
http://www.karger.com/Article/FullText/57838Rubinstein E.
History of Quinolones and Their Side Effects
Chemotherapy 2001;47(suppl 3):3–8 (DOI: 10.1159/000057838)Abstract
Fluoroquinolone development from 1985 to the present was reviewed. Severe drug adverse events were noted for enoxacin, pefloxacin and fleroxacin, which were phototoxic. Temafloxacin was associated with severe hemolytic–uremic syndrome, lomefloxacin caused phototoxicity and central nervous system (CNS) effects, and sparfloxacin was associated with phototoxicity and QTc prolongation. Tosufloxacin caused severe thrombocytopenia and nephritis, and hepatotoxicity was reported for trovafloxacin. Grepafloxacin was withdrawn due to cardiovascular effects, and clinafloxacin was associated with phototoxicity and hypoglycaemia. The structure of the quinolones directly relates to both their activity and side-effect profiles. The relationship among specific substituents attached to the quinolone nucleus are clarified. The incidence of specific adverse events associated with individual fluoroquinolones was reviewed in a five-year post-marketing surveillance (PMS) study in Japan, in which a total adverse drug reaction (ADR) rate of 1.3% was found for levofloxacin, compared to total ADR rates of 3.3% for pazufloxacin, 3.6% for tosufloxacin, 4.5% for gatifloxacin and 5.4% for balofloxacin. Gastrointestinal effects were the most common adverse events for all fluoroquinolones. Levofloxacin had the lowest rate of CNS effects and skin adverse events among the agents listed.
=====================================================================
FURTHER INITIAL READING:
* The page at:
http://en.wikipedia.org/wiki/Fluoroquinolone_toxicity
...is well-researched, unlike most Wikipedia health articles.
* The "Flox Report" linked from:
http://www.myquinstory.info/wp-content/uploads/2010/01/FLOX_REPORT_REV_11.pdf
Note: When vasculitis is present, it exacerbates symptoms. It does not cause them. That part of the “Flox Report” is incorrect.
* Those with Peripheral Neuropathy, this blog starting on this page:
http://www.floxedbylevaquin.com/p/peripheral-neuropathy.html
* As a document to show your doctor:
http://www.jaycohenmd.com/fluoroquinolone.html
* Any of the many online support groups.
http://www.antibiotics.org/
https://pinterest.com/floxavenue/
goed link om te genesen
donderdag 7 februari 2013
Abonneren op:
Reacties posten (Atom)
Geen opmerkingen:
Een reactie posten