JUDY, rheumatoid arthritis

My name is Judy Knee and I live in Kelmscott in the sunny state of Western Australia, here is my story:

Around 13 years ago I began having problems with my feet. They had begun to ache and pain so much that my walking was affected. After a diagnosis of Tendonitis and Plantar Faciitis I was prescribed Voltaren. I went through several NSAIDs and finally found that Naprosyn would help out a little.

In June of 1997 I began to suffer from severe pain and fatigue. The pain was in my legs, knees, shoulders and hands and began to interfere with my work. I am a Music Teacher, and I found that sometimes I couldn't play a chord or I would play an incorrect note even though my mind was saying this is the correct note. I began dropping things - cups, saucers and pencils. The funniest thing was the pencils - I^'d pick one up and next thing it would fly through the air and land on the ground! It was at this time I decided to make an appointment to see my local doctor.

As a result of this appointment, my doctor had blood tests done for hepatitis and multiple sclerosis, both of which came back negative. He then had the tests done for rheumatoid arthritis. These came back with a positive rheumatoid factor of 38. I was then referred to a rheumatologist.

At this time I began to research rheumatoid arthritis on the Internet and came across the pages of the antibiotic therapy - http//www.rheumatic.org. By now my research had frightened me - what lay ahead was pain, more pain, walking sticks and wheelchairs. At rheumatic.org I began to read about the therapy using antibiotics, the stories from other patients who had gone into remission and I then began printing out the protocol for doctors. I went to the rheumatologist armed with printouts. To my mind it was like playing a lottery. Now, I have never won anything in a lottery but thought that if there was a chance, however slim, I would ask for this minocycline and clindamycin. Well, imagine my surprise when the rheumatologist agreed that I had RA and wrote a script for minocycline, he also wrote a script for prednisilone - 20mg per day.

Within a few days I thought I'd hit the jackpot!! No pain - I could walk straight, didn't bump into anything - it was wonderful!

When I returned the next month to the rheumatologist I couldn't thank him enough. He told me though that he had other patients on minocycline and none of them had shown any improvement at all. He didn't believe that it worked and said to come back in three months - if the minocycline hadn't worked by then he would consider methotrexate or gold injections.

Three months later I returned to see him and had to report that there was very minimal improvement on the minocycline. I was astounded when he told me that I did not have RA but had osteoarthritis instead. By this time my rheumatoid factor had climbed to 125. He did not want to see me again and wanted me off the prednisilone.

Two weeks later I was in tears - my ankles had swelled up and the pain was horrific - I could hardly walk. I went back to my local doctor who told me he believed I had RA, sent me to have X rays. When I went back to see him, he confirmed that I had cysts in my fingers and degenerative arthritis in both ankles, both knees, both wrists , both hands and fingers. He wanted me on MTX or gold which I refused. He was afraid that the RA would go out of control. However, it was to be one of the best decisions I've ever made.

Over the next few months my rheumatoid factor continued to climb until it reached 139 and I mentioned that it might be slowing down. My doc was sceptical and I have to admit here that I also was still sceptical about the antibiotics. The reduction in pain was slow.

On the next blood test, a wonderful surprise awaited - the rheumatoid factor had dropped to 117. I had weaned off the prednisilone (with many flares, I might add, but I finally got there) so we couldn't put this down to that drug. It had to be the minocycline as there was nothing else I was taking that could possibly have induced the rheumatoid factor to drop.

The following test showed the rheumatoid factor had dropped to 90. I had very little pain and was ecstatic. It was not until I reread through my profile at PIOSA (Dr. Graham Chiu's online study) that I realised how little pain I now had. The terrible fatigue had gone and I felt almost normal.

Then, disaster struck. One evening I felt a little tired and sat down in the lounge. Next thing I found I couldn't stand up, certainly couldn't move my feet or legs - the pain had returned. If I kept still I was O.K. but I couldn't walk. I took two Naprosyn and 10mg prednisilone and sat and rested. After about 5 hours things became good and I could walk again. It hasn't happened again.

The pain free periods began to lengthen out and each time I thought "well, this is it - I'm well, the big win" something else would happen. My right knee began to play up. Climbing in and out of the swimming pool was impossible, to climb stairs was like trying to step up or down by 6 feet! They popped and clicked until it was embarrasing. The doctor then injected the right knee with some sort of anaesthetic - three different sorts I believe. It doesn't click or pop any more, however, I believe it will wear off.

At this stage I have no stiffness in the mornings, very little pain, absolutely no pain when I first stand although now and again I experience hot flushes followed by chilled bones or vice versa. I have no fatigue and have learned that if I overdo things I am not treating my body correctly. I have learned to laugh at my affliction - especially when teaching. My students now laugh at my mistakes and try to do one better than me - in fact this year their overall average examination results have been the highest ever, and I can only thank RA for it!! Strange, but it worked!

Diet wise, well, I really wanted to see if minocycline worked on it's own. I have not kept to the diet (Organisers' note: but the diet helps recovery), apart from trying to drink a lot more water and I can truly say that the antibiotic therapy is the only thing that has kept me out of a wheelchair. I firmly believe that if it wasn't for the antibiotics, I would be in a wheelchair by now - mind you I can't run, and my walking is limited, but I have been blessed with a reduction in my blood levels and no fatigue, little pain and am now trying to build up my strength once more.

My blood test results are as follows:
10/6/1997 RF 38 ESR 9
14/8/1997 RF 98 ESR 10
17/9/1997 RF 115 ESR 12
6/1/1998 RF 125 ESR 10
25/2/1998 RF 133 ESR 14
26/5/1998 RF 139 ESR 16
3/7/1998 RF 117 ESR 6
7/10/1998 RF 90 ESR 4
12/1/1999 RF 89 ESR 18

My doctor is ecstatic that I have been able to reduce the RF and that at this stage I am holding my own.

I still can't believe that I am winning the lottery, sometimes I still feel sceptical but I only have to read back in my pain diary to realise how far I have come on the Road Back to good health.

Please, if anyone is reading this, please try the antibiotic therapy, be patient with it, I've been on it now for 16 months and IT IS WORKING!!!!

Judy Knee.

You can reach me at judyk@iinet.net.au

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