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Hello,
I was diagnosed with Systemic Scleroderma in November of 2008. I do not show any signs of organ involvement as of yet. So I assume I am in what is “Phase 1” as my symptoms are the stiff, puffy fingers and hands, arm weakness, pins and needles in fingers and toes, and mild heartburn. I was wondering when AP can actually be started and if there are benefits from starting at a phase 1 as opposed to later stages? I would love to hear comments from others on what stages they were at when AP was started.This post has been moved to the 'General Discussion' area where it can receive replies. 'Personal History and Progress' area is for author's journal notes only and cannot generate responses. RBFV
Andrea – welcome to Road Back and sorry that you had need to find us. There are alot of wonderful SD folk who post on this Forum and will no doubt post their wisdom and experience. However, AP is something that can be started at any time for any rheumatoid disease – and, I believe, in all cases the earlier the better. The fewer meds we've taken, the fewer complications, the less compromised our immune system, the better. Many people come to AP late – lack of awareness of it as an option, other treatments not or no longer working being two reasons. Finding it early after diagnosis often bodes well for a good response and often a pretty quick one. If you havent already, we suggest reading the Henry Scammell book: Sclerodermawhich you can obtain through amazon. You might also find these 3 pieces of info from our main site interesting reading. Best to you, Lynnie[/color]
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/96.html
https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/68.html
https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/67.html
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Andrea,
I started on AP last October when I first tested positive for SD (SLC70). At the time I had a few vague symptoms. Like yourself, I wasn't sure if I should wait until I got sicker or just start on AP. After some good advice and support from the wonderful people on this Board, I decided to start AP right away before the disease got ugly. I am happy that I did because I did start getting symptoms shortly afterwards. The earlier the you treat SD, the better. From what was explained to me, AP is much more effective when the disease is caught early.
Andrea,
I was diagnosed with SD in October 2008, started AP in December 2008, and am so glad I did. Don't wait until you start getting symptoms before you get on AP-the earlier the better. I wish I would have found RBF when I first started having symptoms in the fall of 2007–maybe I wouldn't have had the damage done to my body that I did. Thank God it's reversing itself now. I know this sounds crazy but, it's a blessing that you tested positive for it early, and you know what you're dealing with. I had 17 doctors scrambling to figure out what was wrong with me for a year before I figured it out myself. SD is so unpredictable, and capable of doing SO much damage so quickly…get ahead of the game as soon as possible!
And, absolutely read the Henry Scammel book–that book, and everyone on this board saved my life.
Just another SD patient here but I would say the sooner the better. Nobody enjoys feeling bad right?
Andrea,
Like Mschmidt, I had SD for about a year before starting AP. A long time for diagnosis was the delay as well as searching for other treatments on my own. I didn't have the antibodies but maybe fortunately (?) my progression was so rapid, that by the time I got diagnosed, I was in stage II of SD and I think I was beginning to get internal organ involvement, although there were no overt signs.
With AP, my symptoms started reversing (ever so slowly) and I continue to see small increments as I mark my year 3 anniversary on AP. Do start as soon as you can …. and read as much as you can.
Best,
SusanSooner. I never questioned *if* AP would work. I only questioned if I would have gotten as bad with SD if I had started AP when my very first symptoms appeared.
Another vote for the sooner the better to start AP. My daughter lost the better part of her 16th year to the rapid downward spiral of systemic scleroderma. At age 15 she was an up and coming nationally ranked competitive swimmer and held the highest GPA in her high school. That all started to unravel with the onset of her scleroderma symptoms.
I often think that I wish that she would have had acne, maybe she never would have developed scleroderma symptoms if she was on minocin.
Cheryl
SOON was not soon enough for me. I can't imagine what would have happened to me if I hadn't started AP right away. Not something I like to spend time thinking about 🙂
Start ASAP!
I developed Raynaud's in January 2008 but I only had my first SD symptoms begin this summer. At first, it was just telangiectasias on my legs, which were unsightly but simply cosmetic.
I noticed some changes to my nail fold capillaries and went in to get tested for ANAs. I tested positive for SCL70 (normal is 1-19, I checked in at 20). I also had some weird tingling in my extremeties, though no swelling. No doctor wanted to say I had SD though because I had no skin changes and no organ involvement. This was in May.
In June, I found an AP doctor, told him I wanted to start doxy to be safe. He was reluctant to prescribe it right away… Raynaud's and telangiectasias aren't really the concrete basis for diagnosing SD. I ended up getting some travel clinic doctor to rx me for doxy under the false guise of travelling through malaria-ridden parts of SE Asia. I was taking the drugs anyway so my AP doc got on board.
We're now October and most of my telangiectasias have faded and the tingling has stopped. I still have weird numbness at the tips of two fingers and I still have Raynaud's, but my SCL70 level has dropped to 7. Obviously, something's working.
Who knows if that was SD developing (it seems like it, from what other people have described). I evidently nipped it in the bud. Things never got bad and my life hasn't changed much, except that I take pills and supplements. My AP doc certainly thinks that getting to it super early was a great thing, and because I'm young (23) and otherwise healthy, we're going to monitor things and talk next year about getting off meds.
Start early!! You don't want to find out how bad SD can get!
[user=1359]paper tiger[/user] wrote:
We're now October and most of my telangiectasias have faded and the tingling has stopped. I still have weird numbness at the tips of two fingers and I still have Raynaud's, but my SCL70 level has dropped to 7. Obviously, something's working.
Paper Tiger, thanks so much for coming back to check in and let us know how great you're doing! This is all fantastic news!!! I was wondering how Dr. D in Montreal was working out for you, as I know you had to wait a while to see him.
Your proactiveness has paid off! Good on you, girl!
I still smile, thinking about the lovely pic you posted of your class while visiting in Japan. 😀
Peace, Maz
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