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On The Mend

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#1 Rod



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Posted 14 December 2007 - 12:48 PM

Hi all,
Well I thought I would report on my circumstances for the past six months.
This disease (systemic scleroderma) has taken me very far down, but I think I may be "on the mend" and on the way back.
My mobility was so effected I could only get arround in a wheelchair. I have spent many weeks in hospital with renal crisis, pneumonia and various intestional problems.
I had my last cyclophosphamide infusion last week and for the past 7-8 weeks my condition has improved dramatically. I have returned the wheelchair and toilet aids
I am back at work for 3-4 days per week. I help my wife with the house work and shopping and I am actually looking foward to holiday.
I still have lots of issues with this disease but there are improvements every day.
My treatment has consisted of Cyclophosphamide infusions, IVIG, Bosentan (Tracleer) for the lungs, prednisone 5mg, ACE inhibitors for the kidneys, avapro to reduce blood pressure, losec for reflux and various other drugs.
I don't know if my improvement is due to this chemical concoction or if my immune system has decided to sort itself out. Whatever the reason I am grateful and looking at life differently now.

I wish everyone the very best for holiday and I hope the new year brings everyone better circumstances.


#2 Peggy


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Posted 14 December 2007 - 01:33 PM

Hi Rod:

New to this site but read your post and it sounds like you have really gone through alot. I am so glad you are blessed to be feeling better so you can enjoy the holidays.

All the best to you and blessings.

Warm hugs from Minnesota,


condition: systemic scleroderma; sjogren's; raynaud's; hypo-thyroid; mixed connective tissue disorder; reflux issues; interstital sistitis of the bladder (sp)?

#3 emmie


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Posted 14 December 2007 - 06:13 PM

Wow, Rod, you have been through the wringer! I'm sure you AND your family are thrilled to see the improvements you are experiencing. I think it's stories like yours that really help us see that the care of scleroderma has changed so much in the past several years that everyone should always have hope.

I wish you and yours a wonderful Holiday season and Good (much better) health in all the years to come.


#4 Sam


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Posted 15 December 2007 - 04:49 AM

Rod that sounds great. I'm glad things are looking up for you. You sound relly postive. Take care and Happy holiday to you ... sam