Checking In – Diffuse Systemic Scleroderma

[Mumof3]

Amy – Thank you so much for checking in and sharing your story with us. It is great to hear how well you are doing on AP. Especially for those of us newer to AP. It really helps to hear others who have had success with AP. Glad you are doing so well!

[jlc6166]

Amy,

Wow, your story matches my wife Jennifer's almost to a tee.  Same timeline and everything.  We even considered Dr S in DC and went to a collegue of hers Dr F in Arlington. 

My wife is also doing much better.  She is training for a 1/2 marathon and getting ready to start a new job.  I am so happy to hear more stories like hers. 

Jack

[Kameep]

Lynnie – I most definitely will write up a full history and post on the other thread 🙂

[Kameep]

Brenden – Glad to hear you are starting the minocycline, I wish for you the same results in a speedy manner!

Mumof3 – the same to you! 

Jack – interested to hear your wife and I have same timeline and I see thyroid issues!  And we are in same area.. I work in Arlington.  I'd be interested to talk to Jennifer sometime… and my husband would probably enjoy talking to another mate of someone with SD.. 

 

[jlc6166]

Amy,

Sounds good.  Feel free to email or call.  Email is jack.g.clifford@cox.net and cell phone is 757-818-4855.

We are actually in Virginia Beach.  We had trouble finding an AP doc in our area and Jennifer was working as a nurse in Alexandria at the time.  That is why we went to Dr F.  We actually found a Rheumy in Chesapeake who has been willing to consult with Dr F.

Hope to hear from you and/or your husband.  Tell him I am sure I can really relate.  I have had to learn about so much new stuff since she start having problems in Oct of 2007.

Jack

[edingSDAP7mos.]

Hi Amy,

Congratulations!  I also have diffuse scleroderma & on minocin  for 1 yr & 4 mos & IV clindamycin for 10 mos. The progress is very slow for me. 

I was diagnosed in Sept.07 but my symptoms started Dec.06 & started the minocin on dec. 07 after switching to another rheumatologist.

Seems your progress is fast. You are very lucky. Do you have lung involvement?

I have pulm. hypertension now & I just started on tracleer 2 wks ago.

How are your hands? Did they ever got  swollen? Do you have problem with contraction? I do & I can't wear my wedding ring for awhile now.

Anyway, I am so happy for you. I hope someday, I too will be in jubilation like you!

God bless.

Eding

[Randy]

[user=405]edingSD/AP7mos.[/user] wrote:

I have pulm. hypertension now & I just started on tracleer 2 wks ago.

Hi Eding,

Like you, my progress is not as fast as Amy's.

Do you see Dr F.? I assume you are on 100mg twice daily of Minocin.  What has been your Clindy protocol?

From the time of your 1st SD symptoms, when did you start having pulm. hypertension? Were you already having some lung issues when you started AP, or did they start after you had been on AP for a while?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[edingSDAP7mos.]

Hi Randy,

I too go to Dr.F.  I just had my 11th month IV clindamycin session last sunday. My regimen is 7 days then off 3 wks. I got another 3 wks to go then hopefully it will be the last. Wishful thinking!!! 1st day is 300mg, 2nd day 600mg, then the rest is 900mg. Minocin is 100 mg 2x daily plus numerous supplements including the latest immunobalance drink. Nurses has problems finding a vein for me most of the time.:(

My pulm. hypertension appeared before I decided to go on the IV clinda. I was on the po clinda. because it was my choice. As always hindsight is 20/20. Oh well, the poor choices we make. Anyway, I am on the tracleer & 5 days now I haven't used my oxygen. Praise the Lord! 

How about your regimen?

I am hopeful that I will be healed & we all be healed.

I believe that I am doing the best I can to fight this & God will do the rest!:)

Eding

 

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