Waynes road back begins

[Wayne]

Hi to everyone. July 2009. I live in Australia working as a Paramedic when I noticed my hands becoming itchy, numb and swollen, affecting my work. Along with this, I had various joint pain, stiffness, muscle weakness, acute sensitivity to the cold, rehnauds and fatigue. We were wondering what was going on as I was normally so active, strong and healthy. That was the beginning of my current journey with the disease SD.

We have found a Rheumatologist who diagnosed my condition and initially treated me in the normal medically accepted way, however I had some sort of huge and serious reaction (I could barely walk or breath) to that treatment and ended up in hospital for a week, where I taken off Methotrexate and Prednisolone. Once home, my SD symptoms were progressing fast, with what seemed to be little or no hope for the future. I was really quite fearful wondering what sort of prognosis do I have, and my whole family were distressed and concerned.

Thanks to my wife Helen, she found this site after much and endless research on the net. This has lead us to take the AP to my rheumatologist who has agreed to start the treatment we suggested, even though he is not familiar with the protocol. We now seem to be left to our own devices, learning something new almost every day and playing doctor trying to sort out a treatment plan and the correct dose for medications including the AB Minomycin.

January 2010. It's now 4 months on from diagnosis and I take 200mg Minomycin a day and the SD continues to move aggressively. I have extensive skin involvement and quite reduced movement to my puffy fingers and wrist. My arms are difficult to raise above my head and it's hard to squat due to skin tightening. My face has thickened and I have and ongoing sore throat. I feel that internal organ involvement would still be minimal. It has now become evident that it is paramount to start IV Clindamycin in an effort to kick start my treatment .

I have (27 Jan 10) started a 2 week course of IV Clindamycin, 300mg 2x a day and are currently in hospital. Also we are booked, to see Dr D in Vic and naturopath Lynne who works closely with her. I can hardly wait to be assessed and advised by a very experienced AP Dr and naturopath whom we will have travelled some 4500km's from our home in Perth to see. We will be sent home from Victoria with a well refined treatment plan to implement. Yee Ha :roll-laugh:

In Feb the first IV Clindamycin, plus the introduction of new AB's and the new Gluten free, dairy free, preservative free diet, all had a significant impact within one week of starting. My swollen legs and feet improved, as did my energy levels. Could this be the start of a turn around?

Over the next month I felt that the SD progression had started to slow and was hoping it was true. I was concerned that my oesophagus was starting to show involvement, but that concern disipated as symptoms there disapeared. By April it was becoming obvious that the skin was softening and like my legs, the swelling going down on my hands and arms. Continued progression around my upper arms, neck, and face seemed to have stalled.

June 2010. SD is in retreat – Yee ha :roll-laugh:. Still a very long way to go, but how fantastic to have slowed the progressive nature of SD and even to start to turn it around.

Symptoms are – minimal swelling to feet and legs (almost back to normal), hands and arms softer with blood vessels starting to show again, hair on the back of hands coming back and looking healthy, mild hand sclerodactyly to middle finger left hand, sclerotic scaring evident to tendons in the neck with mild thickening on the face and upper body, forehead tenderness almost gone with hair thinning stablising, jaw a little tight still, fatigue evident but reduced.

July 2010. No time to rest when raging war against such a formidable foe as SD. I'm back in hospital for a 5 days of IV Clindamycin @ 900mg a day. It is obvious that AP and prayer has rescued me from a continuing down hill path with SD and I will fight the fight with everything I've got.

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Author]

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