This page is about my personal experience with rheumatoid arthritis and some of the myths associated with the disease.The
object is to make patients aware of what some patients may encounter.
There are knowledgeable therapists specifically trained in the treatment and management of rheumatoid arthritis but unfortunately
they are few in numbers.
Rheumatoid arthritis is an auto-immune disease whereby the synovial membrane is affected. It is a systemic disease, meaning
that if the right hand/leg is affected the probability is that the left side of the body may also be attacked.
RA affects patients in different patterns and forms. In some patients the whole body can be associated with
symptoms of rheumatoid arthritis. RA can start suddenly or progress in a escalating pattern.
Some patients have the mild type with no or little serious implications,others experience the moderate form with erosive
damage to the joints while some patients have severe rheumatoid arthritis with extra -articular features association.
There are also patients who experience marked stiffness rather then swelling. These patients have marked,profound mobility
restrictions.
Rheumatoid arthritis affects patients in different forms and the effects may be individualized. One medication will work
wonders for one patient and do nothing for others. Careful monitoring by the rheumatoligist and patient is required.
At the onset of my disease I was having mobility problems. I went to the local G.P. who diagnosed me as having osteoarthritis
in a 10 minute session without a formal physical exam,blood test or x-rays. He suggested a 2 week vacation.
After the 2 week period I went back to the G.P. The doctor said "You look great,I knew that would solve the problem."
Confused, as I was feeling very fatigued and sore. I went back to work ,I found working impossible.
The soles of my feet were swollen,my neck,jaw ached,along with my shoulders. Bending my fingers was a task I couldn't
even type a paragraph because of pain in my fingers.
One day,I could not walk. I went to the emergency department of a local hospital. The rheumatologist started to
raise my arms and I screamed in pain. After a short preliminary examination he said "You are very ill,you have rheumatoid
arthritis be prepared for a prolonged stay at the hospital".
I had lost over 45 lbs because my jaws were inflamed and I could not eat properly. When I coughed my ribs screamed in
protest
The G.P. had sent in a medical report to the insurance company which covered my medical and retirement benefits In the
report he stated I had osteoarthritis and after a 2 week "rest period" I was capable of resuming work.
I went to the company and protested but they said their hands were tied and could not do anything. My employer said work
6 months and go to another doctor.
I could not work a single day. I had to quit work. I had lost an annual retirement pension plus medical coverage
because of the report.
After seeing the rheumatologists's report the G.P. said "sorry". Sorry is a hollow , consolation from one who should
of known better. A G.P. who gives a 10 minute incorrect visual -diagnosis is inexcuseable. The consequence to the patient
is devastating.
Legally,15 years ago I could of contested the ruling but when you are racked with pain,immobile and sick,logics may escape
the patient along with future adverse consequences.
My rheumatoligist prescribed "gold" injection at 50mlg/weekly plus predisone I usually went to get a injection on a Monday
visit to a G.P.
One week,Monday was a holiday therefore in the previous week he had injected 50mlg. on a Monday and a Friday in
the same week! I received a terrible reaction. My skin erupted with blisters all over my body.
I now realize the consequences that may arise due to a medical doctor who is unfamiliar about the disease itself and
lack of knowledge in administration of a disease modifying drug (DMARD).
The gold was reduced to 25 mlg/weekly and predisone was added - ( should of switched to MTX at that point).
The rheumatologist was unaware of the double dose. I followed that regimen for 5 yrs. until the drug became totally ineffective.
My fingers and elbow joint became seriously deformed. Deformity or not that is another hallmark of the rheumatologist's
mark of success.
I was on methotrexate starting at 7. 5 mg. but the drug was ineffective at the lower doseage. The doseage of MTX
was slowly increased to 19.5 mg.(tablet}
Currently,rheumatologists or internists recommend full dose MTX at onset of therapy.
I tried Arava,Plaquinel (HCQ) but found it ineffective. MTX was again tried by injection. MTX at 25mg. should of
been utilized much earlier. The argument was that MTX injection at 25 mg. would not help because 19 mg(tablet) was tried
previously.
In my case,how wrong! Now,I believe 25mg. MTX should of been tried when gold was found ineffective. However
treatment regimen have changed over the years.
Currently,I am on 25mg. injection MTX and Sulfasalazine 500mg. Predisone is used for flare-ups.
I believe there is too much emphasis on"morning stiffness" to gauge the TRUE activity of rheumatoid
arthritis. In my case morning stiffness was always present.
I also believe in "second opinions" at certain stages.
The patient knows if a medication is "working" towards their benefit or not. In the past rheumatologists used "valuable
wasted time "to determine the effectiveness of certain DMARD's.
How a patient feels and effectively perform their"normal" day to day chores is the prime important criteria.
Patients should be more involved in co-managing and researching more about their disease. Ten years ago mutiple
DMARD therapy was not contemplated
I now have osteoarthritis,ra and osteoporosis . I hope someone can benefit from my past mistakes.