Archive for November, 2009

Flupirtine: New Help for Fibromyalgia, FTD?

2009-11-22

As I mentioned in an earlier post, I bought a small quantity of flupirtine tablets from Germany. I wanted to see if it would help some of my pain that my usual opiates (fentanyl, methadone, hydromorphone) do not touch.  One type of intractable pain resembles Fibromyalgia (FM), an all-over achy pain, particularly deep in the joints, that comes and goes.  When it comes, it stays for hours or sometimes days.  It never just starts and then goes away.  I don’t know if it’s actually FM, or just another facet of my RSD.

Flupirtine maleate is a centrally acting, non-opioid analgesic that has been available in Europe for years.  It was used for lower back pain and post-surgical pain, and then for pain, generally.

Here’s the really important thing.  It also has CNS neuroprotective properties.   This is leading to its possible use for treating CNS neurodegenerative syndromes such as Alzheimer’s Disease, Multiple Sclerosis, Parkinson’s, Huntington’s and Creutzfeldt-Jakob disease, including cognition in CJD.  It might be useful for FTD treatment, too.  Flupirtine is currently undergoing FDA trials for treating Fibromyalgia.  It is also known in Europe as Katadolon and Trancolong.  It is not available in the USA, as it is not FDA approved.

Typical dosage for adults is 100mg three or four times a day, half that for children.  I’m not sure about long-term use or side-effects, yet.  Most of the information is hidden behind registration walls, and I haven’t had time to do all the registrations.

Here is what happened with my first dose:

  • 3:00 pm — fibromyalgia-like pain starts
  • 3:25 pm — took 100mg flupirtine by mouth
  • 4:45 pm — I realize the fibromyalgia-like pain is gone
  • 4:55 pm — bad headache in upper right forehead
  • 5:30 pm — took 1500mg acetaminophen and a short nap, and the headache’s gone

I think the headache is a side-effect of the flupirtine.  The location is exactly where I get a headache and feel electric sensations when I have flare-ups of FTD symptoms.  I doubt that’s a coincidence.  And headaches were reported as side-effects in a good article on flupirtine’s half-life for young, elderly, and renally-impaired patients.

PS.

I got the flupirtine from goldpharma.com, an internet pharmacy in Germany.  You have to fill out a brief medical history for a doctor to review to get the prescription.  The process was very fast, it only took a few minutes from submitting the history to get the prescription, and they shipped it the next day.  We got it in about a week.  The flupirtine came in 400mg tablets, so Selchietracker got a pill cutter, cut the tablets in half and then cut those halves in half to get the 100mg individual doses.  He thought it was kind of neat that the box of “Trancolong” also had the name in braille.  Geek.

New FTD Symptom

2009-11-12

I had a new symptom from my FTD yesterday.  I was suddenly not able to speak.  I tried.  The words were in my mind.  They wouldn’t come out.  I tried to force them out, but the mouth wouldn’t work.  Selchietracker gave me some Nameda, which seems to help my neurological symptoms.  I was able to speak after some 30-40 minutes.  These new symptoms are very scary.  I wondered if I would ever be able to speak again.  What would my life be like if I couldn’t?

Today, I participated in the Wednesday Chat for FTD sufferers at the FTD forum.  I lost track of time and almost forgot about it.  I had some trouble signing into the chatroom, so I was only able to get in during the last of the conversation.  It is helpful to be able to talk to other people who have FTD.

If you suffer from FTD, I suggest you join us on Wednesdays at 7 p.m. Central Standard Time.  For further info see the post about FTD chat on new posts under the FTD Support Forum.

I think I’ll head back to the water for some rest and relaxation.

Visit with the Manhattan Pain Specialist

2009-11-12

Blogging has been on hold while I went to see my pain management specialist in Manhattan.  He’s part of the team at Dr. Portenoy‘s Department of Pain Management and Palliative Care at Beth Israel Medical Center across from Union Square.

I am going to try out a couple of new medicines.  One is well known, baclofen.  It’s a GABA-B agonist, that will, hopefully, do some good via effects on endocrine levels.  We’ll see. I haven’t started it yet, as Selchietracker wants to get a handle on how exactly to manage it.  It has a lot of side effects, and many of those signs and symptoms of adverse reactions, I have already as part of my illnesses.  As one doctor said, I am a complex lady.

The other is flupirtine,  a non-opioid analgesic that works on different receptors in the brain.  It should also have some neuroprotective effect.  That may help with the effects of FTD killing off my brain neurons.  It’s not normally available in this country, although it has been available for many years in Europe.   It’s now going through the FDA’s obstacle course as a treatment for Fibromyalgia.  Selchietracker got a prescription from Germany, and bought it from an internet pharmacy, Goldpharma.com.

After we got back from the trip, I got an alert from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).  Dr. Portenoy is helping to lead a major push to improve the medical community’s education and understanding of chronic pain, so that we pain suffers will be able to get better treatment.  The launch of this effort is a report, A Call to Revolutionize Chronic Pain Care in America, by a private NYC group, the Mayday Fund.  According to the report, chronic pain is a greater burden on the health care system “than that of diabetes, heart disease and cancer combined.”

The trip was great.  We love Manhattan.  We even found a newly reopened gluten-free Greek restaurant, Gus’s, on Bleeker St just a block east of 6th Ave.  The food is good and the seats are more comfortable than our old standby for GF, Rissotteria, which is a few blocks up Bleeker toward 7th.

Want to Really Improve Health Care?

2009-11-03

Via Instapundit:  The post at fightaging.org, The Doom that Fell Upon Medical Progress in the US, only touches upon the tip of the iceberg of the needless human suffering caused by the exploitation of patients — the consumers — by “our” medical system.  In the underlying post they cite, American Healthcare Facialism, Prof.  DiLorenzo from the Ludwig von Mises Institute captures more of the problem, from a political and bureaucratic perspective, caused by state interference.

The problem is older and more deeply rooted in human nature.  G. B. Shaw observed in 1902:

No doctor dare accuse another of malpractice. … But the effect of this state of things is to make the medical profession a conspiracy to hide its own shortcomings.  No doubt the same may be said of all professions.  They are all conspiracies against the laity and I do not suggest that the medical conspiracy is either better or worse … but it may be less suspect.

The medical community’s monopoly is based on technical knowledge that was wholly their property.  The laity was largely prevented from acquiring this knowledge or even the means of acquiring it.  The internet has profoundly altered that balance of knowledge.  Motivated “patients”, i.e., consumers, now frequently know more about their diseases than most of the doctors they encounter, much less the nurses or others of the doctor-lite crowd.  The doctor is no longer the sole, literate, non-religious man in the village.

We have granted the medical profession, and all the other allied “professions” and medical institutions, a monopoly over our medical care.  It has gone so far as to prevent us from taking medicines that we need without their permission.  That monopoly is no longer justified by the balance of knowledge — and hence, power — that now exists.

Prof. DiLorenzo points out the influence states have in inhibiting competition.  Again, using doctors as a conspicuous example:

Physicians have long enjoyed a degree of monopoly power derived from state legislatures that delegate to the American Medical Association (the doctors’ union) the “right” to limit entry into medical schools through accreditation. Only graduates of accredited (by the AMA) medical schools are licensed to practice medicine. [Not quite true.  Graduates from foreign schools can practice after passing a harder test than is required of AMA school graduates.]  The AMA has used these state-granted privileges to limit both the number of medical schools and the number of medical-school graduates. The reduced supply of doctors drives up the price of medical care and the income of AMA members.

The physicians produce an artificial shortage of doctors for the express purpose of providing full, highly paid employment for all physicians, even the most incompetent.  Implicitly, they are telling us — the people, the consumers — that their prosperity and job security are more important than our lives and health.  Like the military’s up-or-out policies — if you are passed over for promotion a certain number of times, then you are discharged — we need to graduate so many doctors that the incompetent cannot stay in practice.  And we need to demand the transparency of results — medical outcomes — identified by individual physician, to know which doctors are good and which are not.

The word “patient” indicates that, traditionally, we are to be passive, medically, in the care the doctor provides.  This is exactly what must change if we are to rectify the priorities of the health care system.

We must return to first principles, those upon which our republic was founded.  We must be clear in our use of words.  This is not a matter of Democrat/blue/left/progressive vs. Republican/red/right/conservative.  This has nothing to do with the political parties of the twentieth or twenty-first centuries or on which side of the hall the French factions congregated in the eighteenth.  These are all false, one-dimensional scales that mislead rather than enlighten.

This is a matter of liberty vs. tyranny.  Tyranny has its own eternal allure.  ” I am weak, I want someone to take care of me, make decisions for me.”  This motivates children, the weak and the slavish.  At the other end of the true scale is Liberty.  “I am strong, I can take care of myself and my loved ones, I will decide what is in my own best interests.”  These attitudes motivate the strong and the free.

In the true meaning of the term, Liberty is what we strive for.  The only progress that we can make is toward greater individual strength and enlightenment to support greater liberty.  Heading back from Liberty towards Tyranny is regression.  As usual, the terms have been stood on their heads in the current national health-care-reform debate:  a Liberal means one who wants the government to have a greater and more tyrannical role, and a Progressive is one who sees movement towards Tyranny as “progress.”  a Progressive is actually a Regressive, a Liberal, a wannabe Tyrant.

We must privatize the health care system, break up the monopolies, encourage competition, demand transparency of outcomes, and take back our power as free adults and as consumers.  We do have the power.  It is up to us to use it.

India is one indicator of the possibilities brought about by an abundance of doctors and freer access to medicine.