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FAQ Frequently Asked Questions / SPO Spondyloarthropathies Process Outline.

WARNING: Neither RISG Inc. or RISG Online are here to give medical advice or treatment. This group exists to relay any and all possible medical and personal information on our afflictions while supplying needed support to all its members. We who contribute to this group are not necessarily medical professionals. All should be considered unreliable until approved by a qualified physician. 

Known Facts.

It is NOT terminal.

There is no cure.

The tendency to develop the disease can be inherited.

It is an auto-Immune disorder.

The initial flare of this disease lasts anywhere from a few months to 11 months.

It can and does go into remission anywhere from weeks to years.

Symptoms include but are not limited to:

Arthritis (swelling of the joints).

Psoriatic Arthritis PA. (nail psoriasis, pitted and ridged nails).

IBD (Inflammatory Bowel Disease).

Iritis, Uveitis (inflammation of the Eyes). Vision problems with Iritis

or Conjunctivitis, blurred vision, sensitive to bright light.

Keratoderma Blennorrhagica (Skin Lesions).

This is a very simple/basic explanation. Most of the information here I've gotten from the RISG list server archives. As you'll be able to tell I'm no Medical Scientist. The reason for this FAQ is that when I know what is happening to me I can accept it much easier. I've created this to give members and visitors to the RISG web page a better idea of just what's happening to them.

Two of the most commonly used Medications.

Descriptions from RXMED

Eyes.

Brand Name: PRED FORTE 
Generic Name: PREDNISOLONE ACETATE
Drug Class: ANTI-INFLAMMATORY AGENTS 

prednisolone ophthalmic
  
Pronunciation: pred NISS oh lone
Brand: AK-Pred, Econopred, Econopred Plus, Inflamase Forte, Inflamase Mild, Pred Forte, Pred Mild, Prednisol
 
What is the most important information I should know about prednisolone ophthalmic?
 •  Do not stop using this medication suddenly if you have been using it for several weeks or more. Before stopping, you may need to reduce the dose over several days to prevent side effects.
 •  Contact your doctor if your symptoms begin to get worse or if you do not see any improvement in your condition after a few days.
 •  Do not touch the dropper to any surface, including your eyes or hands. The dropper is sterile. If it becomes contaminated, it could cause an infection in your eye.
 •  Apply light pressure to the inside corner of your eye (near your nose) after each drop to prevent the fluid from draining down your tear ducts.

What is prednisolone ophthalmic?
 •  Prednisolone is in a class of drugs called corticosteroids. It inhibits processes in the body that cause inflammation. Therefore, the swelling and pain of inflammatory conditions is decreased.
 •  Prednisolone ophthalmic is used to treat eye inflammation caused by infections, injury, surgery, or other conditions.
 •  Prednisolone ophthalmic may also be used for purposes other than those listed in this medication guide.
 
Who should not use prednisolone ophthalmic?
 •  Do not use prednisolone ophthalmic if you have a bacterial, viral, or fungal infection in your eye without also receiving proper anti-infective treatment.
 •  Prednisolone ophthalmic is in the FDA pregnancy category C. This means that it is not known whether prednisolone ophthalmic will harm an unborn baby. Do not use prednisolone ophthalmic without first talking to your doctor if you are pregnant.
 •  It is also not known whether prednisolone ophthalmic passes into breast milk. Do not use prednisolone ophthalmic without first talking to your doctor if you are breast-feeding a baby.
 
How should I use prednisolone ophthalmic?
 •  Use prednisolone ophthalmic eyedrops exactly as directed by your doctor. If you do not understand these directions, ask your pharmacist, nurse, or doctor to explain them to you.
 •  Wash your hands before using your eyedrops.
 •  To apply the eyedrops:
      · Shake the drops gently to be sure the medicine is well mixed. Tilt your head back slightly and pull down on your lower eyelid. Position the dropper above your eye. Look up and away from the dropper. Squeeze out a drop and close your eye. Apply gentle pressure to the inside corner of your eye (near your nose) for about 1 minute to prevent the liquid from draining down your tear duct. If you are using more than one drop in the same eye or drops in both eyes, repeat the process with about 5 minutes between drops.
 •  Do not touch the dropper to any surface, including your eyes or hands. The dropper is sterile. If it becomes contaminated, it could cause an infection in your eye.
 •  Do not use any eyedrop that is discolored or has particles in it.
 •  Store prednisolone ophthalmic at room temperature away from moisture and heat. Keep the bottle properly capped.
  
What happens if I miss a dose?
 •  Apply the missed dose as soon as you remember. However, if it is almost time for your next regularly scheduled dose, skip the missed dose and apply the next one as directed. Do not use a double dose of this medication.
 
What happens if I overdose?
 •  An overdose of this medication is unlikely to occur. If you do suspect an overdose, call an emergency room or poison control center near you. If the drops have been ingested, drink plenty of fluid and call an emergency center for advice.
 
What should I avoid while using prednisolone ophthalmic?
 •  Do not touch the dropper to any surface, including your eyes or hands. The dropper is sterile. If it becomes contaminated, it could cause an infection in your eye.
 •  Use caution when driving, operating machinery, or performing other hazardous activities. Prednisolone ophthalmic may cause blurred vision. If you experience blurred vision, avoid these activities.
 •  Use caution with contact lenses. After applying this medication, wait at least 15 minutes before inserting contact lenses.
 •  Avoid other eye medications unless your doctor approves.

What are the possible side effects of prednisolone ophthalmic?
 •  Serious side effects are not expected with this medication. Rarely, an increase in the pressure inside of the eye, formation of cataracts, or a perforation of the cornea have been reported. Talk to your doctor about any possible side effects.
 •  More commonly, some burning, stinging, irritation, itching, redness, blurred vision or sensitivity to light may occur. Continue to use prednisolone ophthalmic and talk to your doctor about any side effects that you experience.
 
What other drugs will affect prednisolone ophthalmic?
 •  Avoid using other eyedrops or medications unless they are approved by your doctor.
 •  Before using this medication, tell your doctor if you are taking an oral steroid medication such as prednisone (Deltasone, Orasone, others).
 •  Drugs other than those listed here may also interact with prednisolone ophthalmic. Talk to your doctor and pharmacist before taking any prescription or over-the-counter medicines.

Where can I get more information?
 •  Your pharmacist has additional information about prednisolone ophthalmic written for health professionals that you may read.

Inflammation of the joints.

Brand Name: Enbrel
Generic Name: etanercept
Drug Class: TREATMENT OF RHEUMATOID ARTHRITIS 
 ----------------------------------------------------
etanercept
  
Pronunciation: eh TA ner cept
Brand: Enbrel
 
What is the most important information I should know about etanercept?
 •  Do not use or handle this medication without first talking to your doctor if you have an allergy to latex. The needle cover is made from latex and you may have an allergic reaction to it.
 
What is etanercept?
 •  Etanercept reduces the actions of chemicals in the body that are involved in inflammatory and immune responses.
 •  Etanercept is used to treat the symptoms of moderate to severe rheumatoid arthritis in patients who have had an inadequate response to one or more antirheumatic drugs. Etanercept is also used to treat the symptoms of moderate to severe polyarticular-course juvenile rheumatoid arthritis (JRA) in patients who have had an inadequate response to one or more antirheumatic drugs.
 •  Etanercept may also be used for purposes other than those listed in this medication guide.
 
Who should not use etanercept?
 •  Do not use or handle this medication without first talking to your doctor if you have an allergy to latex. The needle cover is made from latex and you may have an allergic reaction to it.
 •  Before using etanercept, tell your doctor if you have
      · suppression of your immune system,
      · a bone marrow disease,
      · any active infection,
      · a history of recurrent infection, or
      · poorly controlled diabetes.
 •  You may not be able to use etanercept, or you may require a dosage adjustment or special monitoring during your treatment.
 •  Etanercept is in the FDA pregnancy category B. This means that it is not likely to harm an unborn baby. Do not use etanercept without first talking to your doctor if you are pregnant.
 •  It is not known whether etanercept passes into breast milk. Do not use etanercept without first talking to your doctor if you are breast-feeding.
 •  Etanercept has not been studied in children younger than 4 years of age.
 
How should I use etanercept?
 •  Use etanercept exactly as directed by your doctor. If you do not understand these directions, ask your doctor, nurse, or pharmacist to explain them to you.
 •  Etanercept is used as a subcutaneous (under the skin) injection only. Your doctor or nurse will give you detailed instructions on how and where to inject etanercept. Do not inject this medication if you are unsure how.
 •  Once the solution is mixed with the supplied bacteriostatic water for injection, use it as soon as possible. If you cannot inject it immediately, store it in the refrigerator for up to 6 hours. Do not allow the solution to freeze.
 •  Injections can be given in the thigh, abdomen, or the back of the upper arm. It is important to rotate the site of injection with each dose to reduce the risk of injection site reactions or damage to the tissue. Do not inject this medication into any site that is red, painful, or hard.
 •  Do not inject etanercept if it is discolored, cloudy, or if it has particles in it.
 •  Never reuse a needle or syringe. Dispose of all needles and syringes in an appropriate, puncture-resistant disposal container.
 •  Store etanercept in the refrigerator away from moisture and heat. Do not allow etanercept to freeze.
 
What happens if I miss a dose?
 •  Notify your doctor if you miss a dose of this medication.
 
What happens if I overdose?
 •  Seek emergency medical attention or notify your doctor.
 •  Symptoms of an etanercept overdose are not known. No harmful effects due to large doses of etanercept have been reported.
 
What should I avoid while using etanercept?
 •  Do not receive any vaccination that involves the use of a live vaccine while using etanercept, without first talking to your doctor. Etanercept may affect your immune system and a live vaccine could possibly result in an infection.
 
What are the possible side effects of etanercept?
 •  If you experience an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives), stop using etanercept, and seek emergency medical attention.
 •  Other less serious side effects may be more likely to occur. Continue to use etanercept and notify your doctor if you experience
      · a stuffy nose, a cough, a sore throat, or a cold;
      · poor wound healing;
      · an upset stomach;
      · a headache;
      · a rash; or
      · redness, itching, pain, or swelling at the injection site.
 •  Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.
 
What other drugs will affect etanercept?
 •  Do not receive any vaccination that involves the use of a live vaccine while using etanercept, without first talking to your doctor. Etanercept may affect your immune system and a live vaccine could possibly result in an infection.
 •  It is not known if other drugs interact with etanercept. Talk to your doctor and pharmacist before taking any prescription or over-the-counter medicines.
 
Where can I get more information?
 •  Your pharmacist has more information about etanercept written for health professionals that you may read.
 

How did I get this thing?

You didn't really catch the disease, The disease is your body's reaction to an antigen (germ). The actual disease is your body's immune system reacting to an antigen (germ) which quite probably isn't in your system anymore.

Antigen: Foreign substance introduced into the body. Toxins, bacteria, foreign blood cells.

How did I get the antigen? (trigger)

That's hard to say, most people don't ever find out how or when they received the antigen. The antigen is also referred to as the trigger for the purposes of discussing these diseases because they trigger the immune system to react albeit unnecessarily. That's also why Reiter's Syndrome is known as reactive arthritis because the inflammation you have is from your immune system REACTING to the antigen (trigger). Anyway, you could have gotten it in several ways.

The two most common ways are:

Chlamydia through sexual contact or Salmonella food poisoning.

Other Infectious agents most commonly involved in reactive arthritis:

BACTERIAL MICROORGANISMS

Enteric:

--Salmonella enteritidis, typhymurium, heidelberg, cholereses, saint paul, montevideo, agona.

--Yersinia enterocolitica

--Helicobacter jejuni (formerly Campylobacter)

--Clostridium difficile

Genitourinary:

--Chlamydia trachomatis

--Ureaplasma urealyticum

--Neisseria gonorrhea

Cutaneous:

--Propionibacterium acne

--Borrelia burgdorferi

Respiratory:

--Streptococcus pyogenes (hemolyticus), Group A

--Chlamydia pneumoniae

Other:

--Brucella sp.

--Neisseria meningitidis

--Mycobacterium tuberculosis

PARASITES

--Loa (filaria sp.)

--Giardia lamblia

--Entamoeba histolytica

--Blastocystis hominis

--Strongyloides stercolaris

--Taenia saginata

VIRUSES

--Hepatitis B, A, C

--Parvovirus B-19, RA-1

--Rubella

--Human immunodeficiency (HIV)

ARTHROVIRUSES

--Cytomegaloviruses

--Adenoviruses

--Human leukemia virus (HTLV-I)

What is this HLA-B27 I hear so much about?

Okay, going back to the basics. We all have a Mother and Father and we inherit one set of chromosomes from each. So this gives us each two copies of the HLA gene. We all have a region of genes responsible for creating proteins that recognize foreign material in our bodies. This region is called the "Major Histocompatibility Complex" (MHC). Within this region there are groups of genes whose codes for proteins are expressed on the on the surface of leukocytes (type of white blood cell). For this reason these proteins are called Human Leukocyte Antigen (HLA).

Gene: In a Chromosome are DNA, in DNA are genes. Among these genes are the HLA-B27 gene. (Human Leukocyte Antigen). A small section of the DNA strand that gets transcribed into mRNA messenger that get translated into amino acids sequence when correctly folded produces a protein.

Leukocytes. Also spelled leucocytes. Type of white blood cell.

Messenger Ribonucleic Acid abbreviation mRNA. RNA is similar to DNA as

it's also a chain and consists of nucleotides; unlike DNA the sugar is ribose and uracil as one of it's bases instead of thymine. Messenger Ribonucleic Acid copies the DNA's code for proteins and moves it to a specialized part of the cell. Here it assembles amino acids from the message brought by the mRNA.

Chromosome: made up of DNA and proteins.

Cell: The smallest structure of an organism that is capable of independent functioning.

 

RISG

HLA-B27 is a protein in a gene. The gene is also named HLA-B27 because scientists didn't want to have another name to remember. I guess you could say the gene inherited it. Medical science believes that it has a great deal to do with one’s ability to contract the disease or more accurately one’s body’s likelihood to react in a improper way to the trigger. If you are HLA-B27+ (you have the gene) your more likely to be acceptable to the trigger and develop the disease. There are many questions about this and it can get very complex so here we go.

Human Leukocyte Antigen (HLA) is one part off the equation of determining ones genetic vulnerability to the disease. Scientist have discovered that we have three kinds of HLA so they named the A,B, and C. HLA-B is the one we're interested in. Then they discovered (they just don't quit) there are several types. 27 is the one were interested in. This gives us HLA-B27. They now believe it may go even deeper in further subdivision of each variant. HLA-B27w01 often abbreviated B2701.

B gene HLA-B

27 type HLA-B27

01 subtype HLA-B27w01 or B2701

Each subtype has a different relative risk of developing the disease and to further complicate matters, one subtype in one racial group doesn't have the same effect as the same subtype in another racial group.

Up to 90% of the people with the disease are HLA-B27+ This doesn't mean if your HLA-B27+ you will get the disease. Not at all, in fact if your HLA-B27+ you still have a 97% chance you won’t.

This is how it breaks down.

Only 6% to 7% of the Caucasian population has the HLA-B27 gene, of those 97% never develop the disease. It's rare to find HLA-B27 in people of African descent.

So only 3% of the 7% do. It's very very rare. You can find out if your HLA-B27+ by a simple blood test but as you can see it's really not worth finding out with all the variants and even if you are HLA-B27+ you still have a 97% chance of not developing the disease.

I said it's part of the equation because HLA-B27 is only about 40% and that leaves 60% out there to yet be discovered. This 60% could be 100 genes each providing 0.6% each or it could be 1000 genes each providing 0.06%. It's just not known, but it's believed this 60% is what makes our immune systems prone to react to the triggers that make our immune systems tag itself as the antigen and in doing so create the symptoms that are the disease.

Okay, but now that I’m triggered and have the disease what's happening to me?

There are many theories as to what makes us go into and out of remission. Some say it's environmental and some say otherwise. But once we are no longer in remission this is how it works.

Our immune systems are made up of white blood cells. In these white blood cells is DNA.

DNA: Deoxyribonucleic Acid. The DNA molecule holds the genetic code or blueprints of the living thing it inhabits and passes this code onto the next generation. It resembles a twisted ladder and the side rails are made up of Phosphate and a sugar called deoxyribose. What would be the steps are made up of four bases that carry the genetic information called Thymine, Adenine. Guanine and Cytosine. The DNA is wrapped around proteins called Histones which keep them from getting tangled.

The white blood cells are of two principal types: granular, which have multilobed nuclei, and the nongranular, which have rounded nuclei. The granular leukocytes include neutrophils, which ingest and destroy bacteria, eosinophils, which secrete the anticoagulant heparin and the substance histamine, which stimulates inflammation.

Found in the blood stream. Proteins sticking out of the surface of the cell membrane bind to epitopes (3D shape of antigens). These proteins are HLA proteins and they tag the antigen for later recognition by our bodies. This recognition is made by looking for epitopes on the antigen that bind to the proteins on the surface of the leukocytes. Our immune systems make a vast array of these proteins (HLA) all recognizing different variations of antigens. Once attached to the epitope the body is able to determine whether the epitope is recognized or is a new foreign material. If not recognized our bodies produce more of that particular HLA to help with the immune response against the new threat.

Protein: is a long peptide chain folded up.

You can get a copy of this page in text format via email by sending a blank email to faq@risg.org or read more about the individual symptoms by going to symptoms of the Spondyloarthropathies.

 


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