posted
Has anyone had symptoms of paralysis on Diflucan/Fluconazole, Flagyl/Metronidazole, or Tindamax/Tinidazole?
I believe my experience may have been porphyria-related, but I was hoping to talk to others to see what I could learn.
My experience 7 months ago was slow onset of first weakness, then paralysis in my legs after 24 days on Diflucan/Fluconazole at 250mg twice a day. It took a week or two for the paralysis to clear up after immediately stopping the medicine, and many weeks/months before the weakness cleared up. There were many other symptoms as well that could have been herx or perhaps also porphyria, but paralysis was the most puzzling.
Some months prior to this I also had some numbness and severe peripheral neuropathy on Tindamax and Flagyl and had to stop them.
Thanks for any feedback!
-------------------- BetterInPortland Posts: 13 | From Portland, OR, NW US | Registered: Feb 2008
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I have no idea in answer to your question, but 250mg TWICE a day of Diflucan seems very high. I thought the max daily dose was 400mg and most of us taking 200mg ONCE a day.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Thanks for catching that, DontLikeLiver, it was 100mg twice a day for 24 days. I got it mixed up with my Zithro dosage.
Cheers! BetterInPortland
-------------------- BetterInPortland Posts: 13 | From Portland, OR, NW US | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While I can't answer your questions, perhaps the links below may be of help. It' just what I've collected as I search for similar answers of how to treat TBI if porphyria is a player.
No LLMD in my state and no porphyria doctor since the expert retired about 10 years ago. So, thank the web for all links below.
When searching on PubMed, or elsewhere, I am confused when one drug INHIBITS the C P-450 pathway, another SUPPRESSES it while, yet another will ACTIVATE it.
Here's another INDUCER: " . . . Rifampin is a potent inducer of cytochrome P-450 oxidative enzymes as well as the P-glycoprotein transport system. . . ." see http://tinyurl.com/2x7ph8
So, is an "inducer" or a "suppressor" good or bad for what we need to know ?
Figuring out all this is hard do along - while feeling awful. I find the folks at the Canadian site the best to talk to for specific questions.
I sent you a PM with the name of a porphyria-knowledgeable N.D. who is 2 hours south of you.
Good luck.
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my notes on the subject:
Various colored urine can also be a sign of a one of several types of porphyria. Different porphryias may relate to different hues of the urine. While color itself can be a diagnostic tool, the absence of color does not rule out a porphyria as some types do not affect the urine color. Over eleven types.
As artemisinin uses the Cytochrome P-450 pathway, in a person has any of the eleven (or more) porphyrias or "secondary porphyria" it can cause excess buildup of porphyrins.
Many drugs use the C P-450 detox liver pathyway - and exposures to household chemicals, too, result in stress on that pathway. Gas heat or gas stoves need to be vented and homes swooshed with fresh air often.
Some dietary measures and certain liver protective / nutritional supplement can help. these are very specific, however, so guidance is good.
The last article mentioned below address diet. While it is contrary to some things we do, figuring out how to do it as healthfully as possible can mean the difference in being able to take medicines or not.
Many herxes for us or side-effects of many drugs for many people may be connected with the toxic porphyrin buildup.
posted
I had a CRAZY response to metronidazole. It felt like atoggle switch between methamphetamine and pain. Then I started shaking all over, my legs especially.
Then I got super dizzy, had a hard time walking.
Then came the stomach upset.
I actually got really excited cause I thought it was herx and working.
My doc pulled me off of them right away and said it was a bad reaction.
I took an oral dose 1500mg per day
Posts: 102 | From ny | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
PubMed - for medical abstracts from around the world.
For a search on porphryia:
Terms:
Porphyria - 8580 abstracts
Porphyrins - 40156 abstracts
Cytochrome P-450 - 54324 abstracts
C P-450 - 6146
Or just:
P-450 - 43640 abstracts (two interesting ones on the first page.)
Diflucan, porphyria - just one abstract. However,
porphyria, p-450 - 183 abstracts
The Cytochrome P-450 liver detox pathway has various pathways within it. And this is where I get off the boat. My brain swirls.
Typical Porphyria testing can only be done during a acute attack.
I think doctors have to re-think what an attack is. It is not just the lower GI or mental issues, but a range of symptoms.
Some doctors think most with MCS have porphyria connections, whether genetic or acquired.
However, for testing, in a chronic illness patient, certain enzymes may have deficient or elevated levels, indicating ``stuff'' (for lack of better term and energy right now).
The porphyria / MCS (multiple chemical sensitivity) specialist who was my doctor believed in chronic porphryia, resulting in many of the symptoms we are all familiar with . . .
however, other researchers see some secondary or temporary porphryia and, once infections are cleared, the ability of a patient's liver makes a comeback and can manufacture the necessary enzymes to process chemicals. Unlike some digestive enzymes, these are not commercially available.
However, certain supplemental support can help protect the liver, thereby, preventing porphyrin buildup.
More about testing at the Foundation and Association links in my previous post. Genova Diagnostics does things a bit differently and that may be worth looking at.
Genova Diagnostics - has changed their name from Great Smokies Diagnostic Laboratory to Genova Diagnostics. The web site has not changed in content or function. ...
www.gdx.net - I could not find it - but years ago a doctor suggested this lab to more precisely pinpoint my porphyria stuff from the first two tests done at MAYO. The tests are rather costly, so I never pursued it.
BTW, while my expert in porphyria believed my symptoms with MCS, bad reactions to drugs, together with MAYO tests, clearly showed 2 kinds of chronic porphyria, the MAYO guys really only believe the acute, off the chart numbers were of concern. Problem is that by the time some of these are off the charts, so is the patient.
And while some may just throw up their hands and not treat, sometimes infection, alone, can trigger porphyria or raise porphryins to even fatal levels. So, treating infections is vital - but doing it while also keeping the liver as happy as possible.
Much still to learn. And, again, knowledge is power.
J Clin Neurosci. 2008 Mar;15(3):263-268. Epub 2008 Jan 9.
Neurological complications of porphyria. Solinas C, Vajda FJ.
Centre of Clinical Neuroscience, St. Vincent's Hospital, Melbourne, Australia; Institute of Neuroscience, Monash University and Monash Medical Centre, Block E, 246 Clayton Road, Clayton, 3168 Victoria, Australia; Australian Centre for Clinical Neuropharmacology, Raoul Wallenberg Centre, University of Melbourne, Melbourne, Australia; University of Siena, Siena, Italy.
The aim of this study was to evaluate and describe the importance of neurological complications in patients with a confirmed diagnosis of porphyria.
Clinical details are presented for a cohort of 14 patients who presented with one of four categories of symptoms: seizures, polyneuropathy, transient sensory-motor symptoms and cognitive or behavioural abnormalities.
Ascertainment of porphyria was often incidental and in many patients neurological complications preceded the definitive biochemical diagnosis.
Porphyria is a group of diseases whose clinical picture is often complex and heterogeneous, but neurological complications are not uncommon. When indicated, differential diagnosis of neurological signs and symptoms should include porphyria, as the incidence of the disease is probably underestimated.
Part of the clinical picture can be transient and it is often initially disregarded.
A family history and recurrence of otherwise unexplained neurological symptoms should alert the clinician to a possible diagnosis of porphyria for patients with neurological presentations.
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