's story

[Guest guest]

Hi group,

I have put 's story on our web page at rheumatic.org and hope you

will enjoy reading her story below.

Chris.

Begin forwarded message:

> From: " P Ferrari " <ferrari53@...>

> Date: 13 July 2008 7:41:53 PM

> <cadlard@...>

> Subject: re dermatomyositis

>

>

> Hi

>

> In 2000, at the age of 43, I was diagnosed with polymyositis after a

> muscle

> biopsy and EMG test. My symptoms were extreme tiredness, Sjogren's

> syndrome, depression, fibromyalgia of the neck and headaches, and

> Raynauds

> disease. My blood CK level was 2,400 at this time.

> I was commenced on large doses of cortisone (which gave me a fat face

> in

> time for my wedding) but it had a yoyo affect. Each time the cortisone

> dosage was reduced my CK level went up.

> Eventually I was also given Methotrexate and Imuran but my CK level

> always

> hovered between 700 and 1000. Inspite of this delightful cocktail of

> drugs

> I progressed to Dermatomyositis.

> The cortisone gave me high blood pressure and cholesterol so I was

> given

> tablets and diet to correct this.

> In 2006 I felt so bad I retired from work and my husband was convinced

> I

> would not live to old age. After a bout of glandular fever I felt

> extremely

> tired and depressed. I also had " brainfog " so I couldn't think clearly

> and

> used to slur my words. In October 2006 I was browsing the net looking

> for

> new developments in the treatment of DM when I found this site. I

> immediately got a copy of Henry Scammell's book The New Arthritis

> Breakthrough and researched the MIRA report.

> At this time I was seeing a panel of neurologist, immunologist and

> rheumatologist every six months and didn't dare ask them if I could

> try this

> new treatment. I approached my GP with all the information and he was

> happy

> to prescribe Minocycline for me as I " had nothing to lose " .

>

> In the first two months of the tablets my CK level went to 1050 and I

> felt

> like a had a dose of the flu. I kept reminding myself it gets worse

> before

> it gets better. The first indication the medicine was working was

> after

> four months when I woke in the morning with moist eyes. I was

> producing

> natural tears and didn't need the eye drops for the first time in

> years. At

> the next blood test my CK had dropped to 495. Suddenly I had energy

> and was

> able to return to work. The depression went, I had greater muscle

> tone and

> no neck or head aches. For the first time in years I felt normal and

> had my

> life back. My CK continued to drop and I had the courage to confide

> in my

> neurologist what I had done. She was very supportive and impressed

> with the

> results, and promised not to take me off the antibiotics. I dreaded the

> thought of going back to the way I was in 2006.

>

> I was taking the Minocycline according to Dr Brown's regime of one

> tablet

> twice a day on Mondays Wednesdays and Fridays. It made me very dizzy

> so I

> switched to Doxycycline. Even though the Doxycycline worked it wasn't

> as

> good as the Minocycline so I went back to this, one tablet every

> evening and

> no side affects. My pharmacist told me the blood pressure tablets I am

> taking block the absorption of the antibiotic by upto 43% so now I

> take the

> tablets two hours apart. I wish I had known about this treatment

> years ago

> and urge anyone to try it. I have since stopped taking the Imuran

> tablets

> and my ultimate goal is to stop the Methotrexate and Cortisone as

> well. I

> seem to go from strength to strength. My husband did not know me in my

> pre

> Dermatomyositis days and he, more than anyone else, has noticed the

> change

> in me. Thanks to Dr Brown I am enjoying life again. Ferrari.

> I am happy to be contacted at ferrari53@...

>

>

>