GWEN, Polymyalgia Rheumatica/Giant Cell Arteritis

My life has been one of constant pain throughout my body as I have a history of multiple chronic illnesses - Raynaud's, Osteoarthritis plus a mild case of rheumatoid arthritis, but in late 2004 my life took a turn for the worse. I was so ill, and in so much pain throughout my body I could not even get out of bed. I had seen many doctors and had numerous tests. Blood test results revealed CRP and ESR high and FBC low.

In January 2005, I developed a huge lump on my temple so went back to the doctor again to see what this could be. He thought I had hit my head in my sleep, but in the next few days the lump grew bigger so I went back to the doctor again. Alarm bells were starting to ring for him and he sent me for more tests. The doctor rang me the next day and told me to pack a bag and go directly to the eye hospital, as he had finally found out what was wrong with me. I had Polymyalgia Rheumatica, plus the secondary complication of Giant Cell Arteritis because they did not diagnose the PR early enough.

They operated on my head the next day and confirmed I had GCA - proceeding then to fill me full of drugs. My doctor could not stop telling me how sorry he was - he thought I was too young to have PR (58 years) - only people in their 70s get this disease. I had to retire from work after 18 years - too ill to continue.

I was sent to the Rheumy, put on toxic drugs including 65 mg. of prednisone, weekly injections of methotrexate, plus Mobic. I was so ill at one stage I didn't care if I lived or died. There was improvement from the drugs in the beginning, but the side effects were horrendous. I got high blood pressure, high cholesterol, and worst of all - steroid induced diabetes. My life was a mess.

In 2006, I decided to search the internet to see if anyone could help me as I was under 5 different doctors and getting nowhere. I knew I had to do something or I was going to end my life in misery. I came across this wonderful support group (www.rheumatic.org) that saved my life. Just being able to send emails back and forth, knowing you are not alone in this fight, was a big help to me.

Now the fun started trying to convince the rheumy to give me the antibiotic protocol. I took all my print outs about members' success stories, but she would not even read them. She said there was no proof this worked in her journals - head in the sand attitude. So back I went to the GP and put my case to her. She said if I could get another doctor to support me she would give me Minocin.

So I went to my orthopaedic surgeon who looks after my knees and hips. Well, he was very supportive when he read the notes saying it made sense to him as often when he is operating on patients he has made the comment to other doctors that the inflammation he was seeing in the joints looked more like infection, so he agreed to write my GP a letter of support for the AP.

Back to the GP I went and she gave me a script for Minocin - asking me to sign a disclaimer which I was willing to do - getting me started on the road back from hell. My dose to start was 200 mg. per day for about four months. When the pain started to improve, I gave up the steroids* and methotrexate, and went to 100 mg per day for another three months until I reached remission. Now I take 100 mg. three times a week to keep me in remission.

I am living proof this treatment works. Even my Raynaud's is in remission. All of my doctors (except the rheumy which I gave the sack to) cannot believe the change in me, and now believe the treatment works and are giving it to their other patients.

I owe a lot of thanks to the group - especially Harold, Mike, Ethel, Delores and other members who told their stories to help people like me. If you would like to know more about my treatment please feel free to email me.

Regards, Gwen

*Patients on steroids should not stop them abruptly, but wean off of them slowly under the guidance of their physician.

You can reach me at gmartin4@bigpond.com


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