By Rex Bush

One of the life saving miracles of modern medicine is machinery that cleans the blood of impurities.  In medicine, dialysis is primarily used to provide an artificial replacement for lost kidney function due to kidney failure.

Dialysis may be used for patients who have either temporarily, or permanently lost their kidney function.

While life-saving, dialysis can also pose risks of injury and death to some users.

FIRST USE SYNDROME

Unfortunately, some bodies don’t react well to the use of an artificial kidney (dialysis machine).

“First Use Syndrome” is a rare but severe anaphylactic reaction to the artificial kidney. Its symptoms include sneezing, wheezing, shortness of breath, back pain, chest pain, or sudden death.

If you find yourself experiencing any of these symptoms after your first treatment tell the dialysis tech or call your doctor immediately as First Use Syndrome can cause sudden death.   For more information on this syndrome see the Wikipedia article on  Hemodialysis.

BLEEDING

According to Dr. David Fowler, chief medical examiner of the state of Maryland, nearly two dozen kidney dialysis patients in Maryland bled to death during the period 2000-2007.  The majority of the 22 deaths happened while patients were at home alone and started bleeding, reported Fowler.

An alert from the Maryland Department of Health and Mental Hygiene’s Office of Health Care Quality explains why this occurs.  “For patients with kidney failure, mechanically cleansing the blood outside the body three times a week is the only way the can stay alive.  However, the long-term access site needed to draw and return blood to the body can weaken and fail.”

MRI

An MRI (magnetic resonance imaging) is a picture taking device similar to an x-ray.  MRIs can see things that can’t be seen with ordinary x-rays.

Sometimes even an ordinary MRI is not enough and a special process is required to make abnormalities visible.   A liquid, known as a “contrast agent” is injected into the blood stream.  This creates contrast on the MRI picture which makes visible certain abnormalities.

The contrast agent is then filtered out of the body through the kidneys.  However, for dialysis patients and others with kidney failure the kidneys don’t remove the contrast agent fast enough and the toxic contrast agent can poison the body.

Gadolinium is a rare metal which is used in some contrast agents.  Recently, doctors have discovered that it has a rare and painful side effect known as Nephrogenic Systemic Fibrosis.

Initial symptoms of the disease include high blood pressure, muscle weakness and thick hardened skin. With time victims may suffer pain, burning and itching in affected areas. With more time, victims may experience stiffness in skin and joints which completely immobilizes them. Some suffer death.

For more info on NSF read the following ezine article MRI Health Risk – Fatal, Incurable Illness

STOPPING

Yes, its true, once you have started dialysis you must be very careful if you choose to opt out of this treatment.  According to the Renal Unit of the Royal Infirmary of Edinburgh, Scotland, “for patients already on dialysis, surveys in several countries have shown that stopping dialysis is quite a common cause of death.”  However, these are almost always people who have developed other serious illnesses after starting dialysis.

INFECTION AND CLOTTING

Clean your access before and after treatments.  Avoid sleeping on the arm of your access as this could cause clotting which would need to be cleaned out before you could get a treatment.  If you have a catheter place, keep the bandage dry, germs love dark, moist places.

Acknowledgements to the dialysis techs at Fresenius Medical Care in Bad Homburg, Germany and to the Renal Unit of the Royal Infirmary of Edinburgh, Scotland

Rex Bush is founder of Bush Law Firm near Salt Lake City, Utah where he handles personal injury cases in Utah and throughout the United States and Canada. For more information on personal injury issues visit his website: Utah Injury Attorney

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This question was submitted by Michelle Hunt of Back To Health Chiropractic West Jordan, Utah.

The answer pertains to Utah law.  Other states often have similar provisions.  Check your state’s laws or call your state’s insurance commission or equivalent to find out your rights in your state. A list of the addresses and phone numbers for the insurance commissions in all 50 states follows this article.

WHEN HEALTH INSURANCE IS NOT PAYING YOUR BILLS

Q Is there a law requiring health insurance to pay within a specific period of time

A.  Yes, in Utah an adjuster has 30 days to  pay or deny a health insurance claim.  If she can’t pay or deny the claim with the information you gave her she may ask for more information.  She may also take advantage of a 30 day extension for claims that need investigation.

If the adjuster  uses the 30 day extension for investigation she  must inform the doctor  before the end of the initial 30 days 1)  the nature of the investigation,   2) the time line  for investigation and 3) the anticipated completion date.

In Utah, the insurer can get more time for investigation only by making a written request to the Insurance Commissioner.

You can charge a late fee when the adjuster does not comply.  It is the unpaid amount times the number of days times 1/10 of 1%.  For example, the unpaid bill of $500 is not paid for 60 days and so is paid 30 days late.   Take $500 and multiply by 30 and multiply that by 1/10 of 1% ($500 x 30 x .001 = $15).

You may refer to this law in your letter or phone call to the adjuster: Utah Code Annotated Section 31A-26-301.6.  It is entitled the Health Care Provider Claims Practices Act.

Alabama
Alabama Department of Insurance
State Insurance Commissioners Office
135 South Union Street
Montgomery, AL 36130
Main Phone: 1-334-269-3550
Fax: 1-334-241-4192

Alaska
State Insurance Commissioners Office
Alaska Department of Commerce & Economics
P.O. Box 110805
Juneau, AK 99811-0805
Main Phone: 1-907-465-2515
Fax: 1-907-465-3422

Arizona
Arizona Department of Insurance
State Insurance Commissioners Office
2910 North 44th Street
Suite 210
Phoenix, AZ 85018-7256
Main Phone: 1-602-912-8400
Fax: 1-602-912-8452

Arkansas
State Insurance Commissioners Office
2100 West 3rd Street
Little Rock, AR 72201-1904
Main Phone: 1-501-371-2600
Fax: 1-501-371-2618

California
California Department of Insurance
State Insurance Commissioners Office
300 Capital Mall
Suite 1500
Sacramento, CA 95814
Main Phone: 1-916-492-3500
Fax: 1-916-445-4280

Department of Managed Health Care
California HMO Help Center
980 Ninth Street, Suite 500
Sacramento, CA 95814-2725
Main Phone: 1-888-HMO-2219
Fax Number: 1-916-229-0465
Email: helpline@dmhc.ca.gov

Colorado
Colorado Department of Insurance
State Insurance Commissioners Office
Colorado Division of Insurance
1560 Broadway, Suite 850
Denver, CO 80202
Main Phone: 1-303-894-7499
Alternate Phone: 1-800-930-3745
Fax: 1-303-894-7455

Connecticut
Connecticut Department of Insurance
State Insurance Commissioners Office
P.O. Box 816
Hartford, CT 06142-0816
Main Phone: 1-860-297-3802
Fax: 1-860-566-7410

Delaware
State Insurance Commissioners Office
Rodney Building
841 Silver Lake Blvd.
P.O. Box 7007
Dover, DE 19903
Main Phone: 1 302-739-4251
Fax: 1-302-739-5280

District of Columbia
District of Columbia Department of Insurance
Insurance Administration
441 Fourth Street, NW
8th Floor North
Washington, DC 20001
Main Phone: 1-202-727-8000 ext. 3018
Fax: 1-202-535-1196

Florida
Florida Department of Insurance
State Insurance Commissioners Office
State Capital
Plaza Level Eleven
Tallahassee, FL 32399-0300
Main Phone: 1- 800 342 2762
Fax: 1-850-488-6581

Georgia
State Insurance Commissioners Office
2 Martin Luther King, Jr. Dr.
Floyd Memorial Bldg.
Atlanta, GA 30334
Main Phone: 1-404-656-2056
Fax: 1-404-657-8542

Hawaii
Hawaii Department of Insurance
State Insurance Commissioners Office
Department of Commerce and Consumer Affairs
250 S. King Street, 5th Floor
Honolulu, HI 96813
Main Phone: 1-808-586-2790
Fax: 1-808-586-2806

Idaho
Idaho Department of Insurance
PO Box 83720
Boise, ID 83720-0043
Main Phone: 1-800-721-3272

Illinois
Illinois Department of Insurance
State Insurance Commissioners Office
320 West Washington Street
4th Floor
Springfield, IL 62767
Main Phone: 1-217 785-4515
Fax: 1-217-782-5020

Indiana
Indiana Department of Insurance
State Insurance Commissioners Office
311 West Washington St
Suite 300
Indianapolis, IN 46204-2787
Main Phone: 1-317-232-2385
Fax: 1-317-232-5251

Iowa
Iowa Division of Insurance
State Insurance Commissioners Office
Lucas State Office Building
6th Floor
Des Moines, IA 50319
Main Phone: 1-515-281-5705
Fax: 1-515-281-3059

Kansas
Kansas Department of Insurance
State Insurance Commissioners Office
420 SW 9th St
Topeka, KS 66612-1678
Main Phone: 1-785-296-7801
Fax: 1-785-296-2283

Kentucky
State Insurance Commissioners Office
PO Box 517
215 West Main St
Frankfort, KY 40602-0517
Main Phone: 1-502-564-6027
Fax: 1-502-564-6090

Louisiana
Louisiana Department of Insurance
State Insurance Commissioners Office
Louisiana Department of Insurance
950 North 5th St
Baton Rouge, LA 70804-9214
Main Phone: 1-225-343-4834

Maine
State Insurance Commissioners Office
Dept. of Professional & Financing Regulations
State Office Building
Station 34
Augusta, ME 04333-0034
Main Phone: 1-207-624-8475
Fax: 1-207-624-8599

Maryland
Maryland Bureau of Insurance
State Insurance Commissioners Office
501 St. Paul Place
Stanbalt Building, 7th Floor South
Baltimore, MD 21202-2272
Main Phone: 1-410-468-2000

Massachusetts
Massachusetts Department of Insurance
State Insurance Commissioners Office
470 Atlantic Ave
Boston, MA 02210-2223
Main Phone: 1-617-521-7794
Fax: 1-617-521-7772

Michigan
State Insurance Commissioners Office
Michigan Insurance Bureau, Department of Commerce
611 W Ottawa St
2nd Floor, North
Lansing, MI 48933-1020
Main Phone: 1-517-373-9273
Fax: 1-517-373-9273

Minnesota
Minnesota Department of Commerce
State Insurance Commissioners Office
133 East 7th St
St. Paul, MN 55101
Main Phone: 1-651-296-6025
Fax: 1-651-282-2568

Mississippi
Mississippi Department of Insurance
State Insurance Commissioners Office
1804 Walter Sillers Building
Jackson, MS 39205
Main Phone: 1-601-359-3569
Fax: 1-601-359-2474

Missouri
Missouri Department of Insurance
State Insurance Commissioners Office
301 West High St 6 North
Jefferson City, MO 65102-0690
Main Phone: 1-573-751-4126
Fax: 1-573-751-1165

Montana
State Insurance Commissioners Office
126 North Sanders
270 Mitchell Building
Helena, MT 59601
Main Phone: 1-406-444-2040

Nebraska
State Insurance Commissioners Office
Terminal Building
941 ‘O’ St
Lincoln, NE 68509-8920
Main Phone: 1-402-471-2201
Fax: 1-402-471-4610

Nevada
State Insurance Commissioners Office
1665 Hot Springs Rd
Carson City, NV 89710
Main Phone: 1-775-687-4270
Fax: 1-775-687-3937

New Hampshire
State Insurance Commissioners Office
56 Old Suncook Rd
Concord, NH 03301-7317
Main Phone: 1-800-852-3416 -or- 1-603-271-2261
Fax: 1-603-271-1406

New Jersey
New Jersey Department of Insurance
State Insurance Commissioners Office
20 West State St
CN325
Trenton, NJ 08625
Main Phone: 1-609-292-7272
Fax: 1-609-984-5273

New Mexico
New Mexico Department of Insurance
State Insurance Commissioners Office
PO Box Drawer 1269
Santa Fe, NM 87504-1269
Main Phone: 1-505-827-4601
Fax: 1-505-827-4734

New York
State Insurance Commissioners Office
160 West Broadway
New York, NY 10013
Main Phone: 1-212-480-6400

North Carolina
North Carolina Department of Insurance
State Insurance Commissioners Office
4140 Dobbs Building
PO Box 26387
Raleigh, NC 27611
Main Phone: 1-919-733-7349
Fax: 1-919-733-0085

North Dakota
State Insurance Commissioners Office
600 E. Blvd
Bismarck, ND 58505-0320
Main Phone: 1-701-328-2440
Fax: 1-701-328-4880

Ohio
State Insurance Commissioners Office
Ohio Department of Commerce & Economics
2100 Stella Court
Columbus, OH 43215
Main Phone: 1-614-644-2658
Fax: 1-614-644-3744

Oklahoma
Oklahoma Department of Insurance
State Insurance Commissioners Office
3814 N Santa Fe
Oklahoma City, OK 73118
Main Phone: 1-405-521-2686
Fax: 1-405-521-6635

Oregon
State Insurance Commissioners Office
Dept. of Consumer & Business Services
350 Winter St NE
Room 200
Salem, OR 97310-0700
Main Phone: 503-947-7980

Pennsylvania
State Insurance Commissioners Office
Pennsylvania Department of Insurance
1326 Strawberry Square
13th Floor
Harrisburg, PA 17120
Main Phone: 1-717-787-7000
Fax: 1-717-772-1969

Puerto Rico
State Insurance Commissioners Office
Puerto Rico Department of Insurance
Cobian’s Plaza Building
1607 Ponce de Leon Ave
Santurce, PR 00909
Main Phone: 1-787-722-8686

Rhode Island
State Insurance Commissioners Office
Department of Business Regulation
233 Richmond St
Suite 233
Providence, RI 02903-4233
Main Phone: 1-401-456-9100
Fax: 1-401-456-9284

South Carolina
State Insurance Commissioners Office
South Carolina Department of Insurance
1612 Marion St
PO Box 100105
Columbia, SC 29202-3105
Main Phone: 1-803-737-6212
Fax: 1-803-737-6231

South Dakota
State Insurance Commissioners Office
Dept. of Commerce & Regulation
500 E. Capitol
Pierre, SD 57501
Main Phone: 1-605-773-3563
Fax: 1-605-773-5369

Tennessee
State Insurance Commissioners Office
Department of Commerce and Insurance
500 James Robertson Parkway
4th Floor
Nashville, TN 37243-0574
Main Phone: 1-800-342-4029 (toll-free)
Alternate Phone: 1-615-741-2218

Texas
State Insurance Commissioners Office
Texas Department of Insurance
333 Guadeloupe St
PO Box 149104
Austin, TX 78714-9104
Main Phone: 1-512-463-6464
Fax: 1-512-475-2005

Utah
State Insurance Commissioners Office
Utah Department of Insurance
3110 State Office Building
Salt Lake City, UT 84114-1201
Main Phone: 1-801-538-3800
Fax: 1-801-538-3829

Vermont
State Insurance Commissioners Office
Vermont Division of Insurance
Department of Banking, Insurance & Securities
89 Main St, Drawer 20
Montpelier, VT 05620-3101
Main Phone: 1-802-828-3301
Fax: 1-802-828-3306

Virginia
State Insurance Commissioners Office
Virginia Bureau of Insurance
State Corporation
1300 East Main Str
Richmond, VA 23219
Main Phone: 1-804-371-9694
Fax: 1-804-371-9873

Washington
State Insurance Commissioners Office
Washington Office of the Insurance
14th Ave. & Water Streets
PO Box 40255
Olympia, WA 40255
Main Phone: 1-360-753-7301
Fax: 1-360-586-3535

West Virginia
West Virginia Department of Insurance
State Insurance Commissioners Office
PO Box 50540
Charleston, WV 25305-0540
Main Phone: 1-800-642-9004
Alternate Phone: 1-304-558-3386
Fax: 1-304-558-4965

Wisconsin
State Insurance Commissioners Office
Office of the Commissioner of Insurance
State of Wisconsin
121 E Wilson
Madison, WI 53707-7873
Main Phone: 1-608-266-0102

Wyoming
State Insurance Commissioners Office
Wyoming Department of Insurance
Herschier Building
122 West 25th St, 3rd East
Cheyenne, WY 82002-0440
Main Phone: 1-307-777-7401
Fax: 1-307-777-5895

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Nashville, Tenn: If you have had an MRI (magnetic resonance imaging) or MRA (magnetic resonance angiography) with contrast (dye injected into the patient so the doctor can clearly see internal organs, tissues and bones) you may be at risk of a fatal, incurable disease.

Nephrogenic systemic fibrosis (NSF) also known as nephrogenic fibrosing dermopathy (NFD)  occurs in kidney patients who have an MRI with contrast.

An article at Tennessean.com tells the story of Jeanie Deason who developed NSF/NFD and has filed a lawsuit against the makers of the contrast dye.  Jeanie’s legs and right arm are now “frozen in a bent position.”  Her condition has so deteriorated that she requires 24 hour assistance.  She spends her days bedridden, limbs throbbing, getting up only when her parents help her to the bathroom.

A doctor  recommended therapy to help with Deason’s condition; however, TennCare, Tennessee’s Medicaid managed care program,  refused for two years to pay for her treatment claiming it was experimental.  Finally, in April, a Tennessee judge said TennCare must pay because the treatment is medically necessary.

Although there is no known cure for NSF, Deason’s physician, Dr. John Zic, an assistant professor of dermatology at Vanderbilt University, believes he can give Jeannie some relief through “extracorporeal photopheresis”.  It takes blood from her body, exposes it to ultraviolet rays, then returns it to her.  This helps her body’s  immune system fight the disease.  It can cost $8000 for a single treatment.

In Denver, Greta Carolus, suffering from kidney failure, was injected with a contrast dye containing Gadolinium, a rare metal.  Four days after her MRI she was hospitalized, diagnosed with NSF and found herself in a wheelchair reports an article at lawyersandsettlements.com.   “I wouldn’t wish this on anybody; my worst enemy I wouldn’t wish this on.  This is just a terrible disease,” says Greta.

Kidney patients are most at risk for this disease as the toxic contrast dye is expelled through the kidneys and if they aren’t working the poison does not leave the body.

The United States Food and Drug Administration (FDA) began issuing health advisory warnings on all MRI contrast dyes (also known as “contrast agents” or “contrast mediums”) containing Gadolinium.

On May 23, 2007, the FDA ordered that a black box warning be added to all Gadolinium-based contrast agent labels concerning the life-threatening risk associated with the use of contrast dyes containing Gadolinium.

The warning states that patients with severe kidney insufficiency who receive Gadolinium-based agents are at risk for developing the debilitating, potentially fatal disease known as Nephrogenic Systemic Fibrosis (NSF).

The required warning includes advice to “avoid the use of GBCA’s (Contrast agents containing Gadolinium) unless the diagnostic information is essential and not available with non-contrast enhanced magnetic resonance imaging (MRI).

Although the FDA requires the warning, this use of Gadolinium containing contrast agents is still allowed and they are frequently used.

Lawsuits filed in federally supervised multi-district litigation in Cleveland allege the manufacturers knew of the dangers long before the FDA imposed warnings.  “Makers of the contrast dye  knew how toxic it was; they knew the results could be catastrophic,” said Seattle Super Lawyer Ken Selander who works with a group of lawyers around the country representing victims of the disease.

Those most at risk for the disease, kidney patients, are legion,  according to the National Kidney Foundation who reports that some 20 million people–1 in 9 American adults–have chronic kidney disease and another 20 million are at risk for developing it.

Of those at risk, the ones most in need of the warning are the 300,000 people in the United States who are dependent on kidney dialysis to remove toxins from their blood. Typically, patients must visit a clinic several times a week for 4-hour periods while their blood is cleaned.

Initial symptoms of the disease include high blood pressure, muscle weakness and thick hardened skin.  With time victims may suffer pain, burning and itching in affected areas.  With more time, victims may experience stiffness in skin and joints which completely immobilizes them.  Some suffer death.

If you or a loved one has kidney disease and experienced severe skin reactions after an MRI you should see a dermatologist at once.   He can order the simple test which confirms you have the disease.

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Magnetic Resonance Imaging tests, MRIs and Magnetic Resonance Angiography, MRAs are commonly used by physicians to study and diagnose numerous conditions of the body.

Contrast material commonly used for these tests help the physician get a clear and detailed picture of the patient’s internal organs, tissues, bones and vessels. The contrast material, are commonly known as dye, is injected into the blood stream.

In recent years, the contrast agent of choice for most doctors contains a metal known as Gadolinium. Gadolinium is also used to make CD discs, computer memory, and television tubes. This substance is a metal. It is extremely harmful to the body. Because of the adverse effect this metal has on the body, the Gadolinium is coated with chelating agents to coat the metal and thereby protect the body from the dangerous effects of the metal.

Some of the manufacturers of the Gadolinium containing contrast agents have used inferior chelating agents. The effect of these inferior chelating agents is to expose the body to the harmful metal Gadolinium.

In order to rid the body of the contrast material after an MRI or MRA, the contrast material containing Gadolinium is transferred to the kidneys before it is urinated out of the body. Gadolinium is especially harmful to the patients with kidney insufficiency.

Unfortunately, Gadolinium exposure causes a rare, debilitating and potentially fatal disease known as Nephrogenic Systemic Fibrosis (NSF). This disease causes a thickening of the skin, connective tissues, muscles and internal organs throughout the body. The disease causes the body to harden from the outside in.

Symptoms from NSF include swelling, tightening, or thickening of the skin, colored patches, bumps or blisters, burning, itching or severe sharp pain in the effected areas, changes of skin texture; difficulty extending arms or legs, muscle weakness, deep bone pain in the hips or ribs and swelling of the hands and feet.

The United States Food and Drug Administration began issuing health advisory warnings concerning Gadolinium dyes as early as June of 2006.

On May 23, 2007, the FDA ordered that a black box warning be added to all Gadolinium-based contrast agent labels concerning the life-threatening risk associated with the use of contrast dyes containing Gadolinium.

The warning states that patients with severe kidney insufficiency who received Gadolinium-based agents are at risk for developing debilitating, a potentially fatal disease known as Nephrogenic Systemic Fibrosis (NSF).

The required warning includes advice to “avoid the use of GBCA’s (Contrast agents containing Gadolinium) unless the diagnostic information is essential and not available with non‑contrast enhanced magnetic resonance imaging (MRI).

Although the FDA requires the warning, this use of Gadolinium containing contrast agents is still allowed and are frequently used.

This article is reproduced here with permission of the author, attorney Brent Adams.  If you or someone you know has developed Nephrogenic Systemic Fibrosis (NSF) or symptoms after having an MRI or an MRA contact Brent, Adams and Associates for a free case evaluation.

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Gadolinium injection used to get a better MRI image can cause nephrogenic fibrosing dermopathy (NFD) or nephrogenic systemic fibrosis (NSF) in people with kidney problems.

NFD/NSF: What’s the Prognosis (likely outcome)?

As NSF is a rare, relatively recent diagnosis, the natural history of the disease is not well understood. Some patients report a gradual improvement in mobility and slight softening of the skin over time. Complete spontaneous healing in a patient with ongoing kidney disease has not yet been reported.

Several patients with NSF have died as a result of complications of their kidney disease or transplant surgery. One patient, who elected to discontinue dialysis, had widespread fibrosis involving the diaphragm, psoas muscles, proximal esophagus and intimal areas of vessels of the kidney and lungs.

As mentioned above, some patients with NSF (estimated at 5% or less) have an exceedingly rapid and fulminant disease course that may result in death. NSF, by itself, is not a cause of death, but may contribute to death by restricting effective ventilation, or by restricting mobility to the point of causing an accidental fall that may be further exacerbated by fractures and clotting complications.

The primary source of the technical information contained in this article is The International Center for Nephrogenic Fibrosing Dermopathy Research (ICNFDR)http://www.pathmax.com/dermweb/ .  This site was created by by Shawn E. Cowper, MD Assistant Professor of Dermatology and Pathology  Yale University

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Gadolinium injection used to get a better MRI image can cause nephrogenic fibrosing dermopathy (NFD) or nephrogenic systemic fibrosis (NSF) in people with kidney problems.

NFD/NSF: How Is It Diagnosed?

Definitive diagnosis of NFD/NSF is made by full-thickness skin biopsy at the involved site. Characteristic histological findings include thickened reticular dermal collagen bundles with dermal spindle cells that stain positive for both CD34 and procollagen.  Cowper SE (2003) Nephrogenic fibrosing dermopathy: the first 6 years. Curr Opin Rheumatol 15: 785-790

Definitions:

●    reticular   = netlike pattern
●    collagen is tiny inelastic protein fibers that make up connective tissue such as ligaments and tendons and it is also the ingredient of scar tissue.
●    spindle cell: A cell that is tapered at both ends.
●    CD34 antigen is a  protein found on the surface of some bone marrow and blood cells.
●    An antigen is a substance which is foreign to the body which causes the body to form an antibody
●    antigens can cause allergic reactions
●    An antibody is a chemical formed by the body to defend it against virus, bacteria or other foreign bodies (antigens) Anything which is not naturally a part of the body is considered an antigen.   The antibody molecules surround the foreign bodies and try to outnumber them and keep them from multiplying
●    procollagen is the forefunner of collagen so it is formed during the development of collagen

So, in summary, a definitive diagnosis of NFD/NSF is accomplished through biopsy of the affected area followed by microscopic examination of the cells and tissue from the biopsy which shows bundles of collagen showing a netlike pattern and skin cells that are tapered at both ends and then lab tests confirm the presence of the CD 34 antigen and of procollagen.

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Gadolinium injection used to get a better MRI image can cause a rare disease known as nephrogenic fibrosing dermopathy (NFD) or  nephrogenic systemic fibrosis (NSF) in people with kidney problems.

NFD/NSF: What Are The Treatment options?

While there is no consistently successful treatment for NSF, improving renal function (due to any modality) seems to slow or arrest NSF (and in many cases allows for gradual reversal of the process over time).

Critical assessment of the effects of any investigational therapy requires careful attention *and reporting* of the patient’s renal function during therapy. Investigational therapies that show objective improvement in the setting of worsening or stable chronic renal failure should be targeted for further investigation. Therapies that show improvement of NSF while renal function is improving may or may not be contributing to the observed improvement. Given the recent association of NSF with gadolinium administration, any reports of investigational therapies should also clearly indicate whether gadolinium was administered during the therapeutic evaluation, and whether there was an identifiable clinical change in the patient’s disease.

Treatments that have been tried and continue to be investigated include:

Oral steroids (prednisone):  Patients with concurrent diabetes should be aware of the risks of hyperglycemia while taking this medication. All patients should be aware of the possibility of gastrointestinal ulceration while taking prednisone. In addition, osteoporosis is often accelerated while taking this medication.

Topical Dovonex (Dovonex is an ointment approved by the FDA for treating psoriasis) : So far, responses have been anecdotal and largely subjective. Some patients report improvement in localized disease.

Extracorporeal photopheresis (ECP): (Note: the patient is given certain drugs which are sensitive to the influence of light then the patients blood is run through a device outside the body [extracorporeal] during which the blood is subjected to ultraviolet rays.)  A recent article describes three patients in Europe who  responded with softening of plaques after several courses of ECP. Each of these patients had no improvement in renal function during the treatment. All three of these patients had had NSF for less than one year.  Experience at Yale suggests that patients with longstanding NSF (arbitrarily set at one year) may not respond to this modality. This treatment is currently under investigation, although no formal trials are yet offered. Some insurance carriers are receptive to covering a trial of therapy, but in the event coverage cannot be secured, be advised that therapy is exceedingly expensive. Many patients and providers have reported that Medicare has provided coverage for ECP in recent cases.

Plasmapheresis: (this is a blood purification procedure which removes antibodies from the blood) As with photopheresis this treatment method is extracorporeal meaning the blood is routed out of the body, treated, and then routed back to the body.  One study from Loma Linda University (ref 12) reported improvement in three patients with liver/kidney transplant. Two of these patients were noted to have concurrent improving renal function. It is unclear what contribution improving renal function may have had in the overall clinical improvement. Nevertheless, anecdotally, some persons have reported slight improvement following plasmapheresis. Several others have been reported who noted no improvement at all.

Cytoxan: (this drug is normally used in chemotherapy to treat cancer) Anecdotally, this medication has shown no improvement in a number of NSF patients.

Thalidomide: (Thalidomide was first marketed in the 1950s and a sleeping pill and as a treatment for morning sickeness.  It is now believed to cause birth defects and so is not approved for sale in the U.S. but the FDA allows its usage in certain studied. )  There are no formal reports on the success of this medication in NSF. However, some patients have reported subjective improvement. Long term tolerance of the drug may be an issue, however. .

Ultraviolet therapy: Some anecdotal use but no reports of success.

Physical therapy (PT): Some patients have reported that physical therapy, in particular, swimming, may be helpful in slowing the progression of joint contractures.  (Contractures are joints that are bent but unmovable from scar tissue formation.)  There is no contraindication to PT, and the definite potential up-side suggests that PT should be pursued whenever possible. Deep massage has been reported to be of benefit.

Pentoxifylline (PXF): ( This medication which is also known as Trental decreases the “stickiness” (viscosity) of blood and thereby improves its flow. This increased blood flow helps patients with peripheral arterial disease to obtain better circulation and oxygen delivery to vital tissues. It is used to treat a condition of painful legs that develop with exercise because of inadequate circulation to the legs and feet)   A recent report describes two NSF patients who received 1200 mg per day of oral pentoxifylline . Both patients stabilized, and the one with less severe disease improved somewhat. As thrombosis (blood clotting)  seems to be an inciting event for many NSF patients, this mechanism could also be partially responsible for the improvements noted clinically. Many more patients will need to be treated to further evaluate the efficacy of this drug.

High Dose Intravenous Ig (Immunoglobulin) Therapy: (Immunoglobulins are antibodies found in the human body) One patient showed objective improvements with one cycle of therapy with this medication. Further improvement with additional cycles was not observed. No comment was made regarding the renal status of the patient while receiving this therapy.   There is anecdotal information suggesting this therapy has been helpful in one other patient with NSF. Additional anecdotal data have been less promising.

Kidney transplant: Several patients have improved significantly with a return to normal kidney function (either as a result of transplantation or medical therapy). In other cases, kidney transplant has resulted in no obvious improvement of the lesions, even with a fully functioning, successfully transplanted organ.

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Gadolinium injection used to get a better MRI image can cause a rare disease known as nephrogenic fibrosing dermopathy (NFD) or  nephrogenic systemic fibrosis (NSF) in people with kidney problems.

NFD/NSF: What Are The Symptoms?

Patients with NSF describe swelling and tightening of the skin, usually limited to the arms and legs but sometimes involving the trunk of the body.  The condition may develop over a period of days to several weeks. In many cases, the skin thickening inhibits the movement of the joints, resulting in a condition where the joint is bent and will not move.   Severely affected patients may be unable to walk, or fully extend the joints of their arms, hands, legs, and feet. Complaints of muscle weakness are common. Approximately 5% of patients have a rapidly progressive course.

The skin changes may start as reddened or darkened patches or bumps.  In time, the skin may feel “woody” and the surface may resemble the texture of the peel of an orange. Patients may experience burning, itching, or severe sharp pains in areas of involvement.   Deep “bone pain” has been described in the hips and in the ribs.

The skin injuries are commonly symmetrical, with zones between the ankles and thighs most commonly involved, followed by involvement between the wrist and upper arms. Hand and foot swelling with blister-like damage has also been reported. Some patients have reported yellow bumps or patches on or near the eyes. Rapid, new onset fluctuating high blood pressure of unknown cause has been described prior to the onset of the skin damage.

From The International Center for Nephrogenic Fibrosing Dermopathy Research (ICNFDR)http://www.pathmax.com/dermweb/ .  The site was created by by Shawn E. Cowper, MD Assistant Professor of Dermatology and Pathology  Yale University

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Gadolinium injection used to get a better MRI image can cause nephrogenic fibrosing dermopathy (NFD)

or nephrogenic systemic fibrosis (NSF) in people with kidney problems.

NFD/NSF: What Causes It?

The kidneys exist to remove from the blood stream excess water and certain chemicals which result from the burning of food in the body.  One of these, urea, a substance rich in nitrogen, gives urine its name.

When the kidneys don’t do their job dangerous chemicals such as urea accumulate in the body and threaten the health and life of the individual.  This failure of the kidneys to properly perform in known as “renal insufficiency”.  (Renal is the medical term for kidneys and, of course, comes from a Latin term, Renes meaning kidneys.)

renal insufficiency – insufficient excretion of wastes by the kidneys renal insufficiency

“Chronic renal insufficiency does not, by itself, mean complete shutdown of the kidneys, and a person with chronic renal insufficiency may still pass urine normally, and may have more than enough kidney function left for normal functioning of the body. Note that you cannot judge the efficiency of your kidneys by the amount of urine you produce. People with quite advanced renal insufficiency, and even people on dialysis may still produce a fair amount of urine. But this does not mean that the kidneys are filtering waste nor regulating [other chemical levels]…efficiently.” Source: http://www.igan.ca/index.html

Dialysis is a method for eliminating unwanted chemical elements from the blood.

When the kidneys don’t work properly, doctors, kidney experts, examine it using a special type of x-ray known as MRI which stands for magnetic resonance imaging.  This special type of x-ray is done after a special substance known as a dye or contrast agent is  injected into the body.  This special type of x-ray is known as angiography.

Angio comes from the Greek word aggeion meaning blood vessel   Graphy comes from the Greek graphos meaning written or writing.  In a sense the angiography is a drawing or picture of a blood vessel or of something related such as the heart.

Renal (renal is the Latin term for kidney) angiography is taking pictures of an important kidney blood vessel (renal artery) and related blood vessels  after dye is injected

Gadolinium is the substance that is injected.  It is a contrast agent which is a dye, taken by mouth or injected, that is sometimes used during x-ray examinations to highlight (make easy to notice) areas that otherwise might not be seen.  The dye makes the interior body parts more visible on an x-ray film.  Contrast agent.  Gadolinium is a rare metallic element.

Gadolinium can be found in tissue samples of NFD/NSF.

Evidence for a link between NFD/NSF was first described in a series of thirteen patients, all of whom developed the disease after being exposed to Gadolinium.  Source: Journal of American Society of Nephrology, September 2006.

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Gadolinium injection used to get a better MRI image can cause NSF or NFD in people with kidney problems.

NFD/NSF: What is it?

Nephrogenic fibrosing dermopathy (or NFD for short) is a rare disease in which scar tissue forms on the skin and internal organs.

Many medical terms come from Latin or Greek and this one is no exception.

Nephro comes from the Greek nephros meaning kidney, -genic comes from the Greek genes which means to cause something.  So the term nephrogenic means beginning in the kidneys.

Dermo comes from a Greek word meaning skin and pathy comes from the Greek pathos meaning disease.  So dermopathy is a disease of the skin.

Fibrosis is scar tissue   that replaces healthy tissue that  is damaged through disease or injury.  Fibrosing means forming or causing to form scar tissue.

So in summary, nephrogenic fibrosing dermopathy is a disease of the skin in which scar tissue is formed on the skin and this disease begins in the kidneys.

Nephrogenic fibrosing dermopathy (NFD) is also known as nephrogenic systemic fibrosis (or NSF) so we have once again nephrogenic meaning originating in the kidneys and we have fibrosis which means scar tissue but here we have the term systemic which means relating to the whole body and so we have a broader term which means scar tissue showing up throughout the body and this scar tissue begins in the kidneys.

This disease is often simply referred to as NFD/NSF.

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