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First let me apologize to everyone who is going to read this same message ad nauseam on all the different scleroderma boards but when you have good news you kinda want to take out a billboard ad.
Never did I expect results like this so quickly. Everything I have heard is that AP is a long slow process, yet I am amazed at what I learned this week. First, a bit of background.
Since the mid 1990s I have been told that I had or was likely to develop an autoimmune disease, most likely the CREST variant of scleroderma waiting in the wings ready to pounce. This was told to me after it was discovered that I had a positive ANA of 1:160. Aside from a mild case of Raynauds, I had no other symptoms, but the doctor who advised me of this was rather ominous about the future. Over the years I watched steadily as my ANA has gone up and up. First to 1:320, then 1:640. But again, in the absence of troubling symptoms, there really was nothing to be done, or so I thought.
In 2007, after a bout of iritis, my ophthalmologist inquired as to whether I had any autoimmune diseases. I responded that I knew I had an elevated ANA with the anti-Centromere pattern. He asked what the number was and I told him that it was 1:640.
That is just wonderful news, redrock. Thank you so much for sharing it here – and can completely understand why you’d want to shout it from every possible rooftop. Way to go! Lynnie
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)Redrock,
Thank you for sharing your great news. Hopefully, it will give someone else troubled by this disease some much needed hope.
Hi Redrock,
I read your message last night that you posted on the rheumatic yahoo group, right before going to bed. I don’t always read these posts, but read yours, printed it out, showed it to my husband, and was very excited! What wonderful news 😀 😀 😀 !!!
I am going to use your e-mail in the info I send to my MIL’s doctor, because she was just diagnosed with SD, and is trying to convince her rheumatologist to prescribe AP. It couldn’t be more timely.
Wishing you the best echocardiogram ever…who says AP can’t work fast…
nancyRedrock,
Thank you so much. I have my next follow-up visit (to continue keeping tabs on possible scleroderma development) tomorrow with Dr. F in Riverside and I’ve been nervous about it… wondering if the ANA will have increased. Reading your fantastic post has made me feel so relaxed and even excited about the future. I am so happy for your renewed health and I will be praying that March brings the best echocardiogram you’ve ever had! Thank you thank you thank you for sharing your great news with the rest of us. Really inspiring.
Warmly,
Aredrock,
This makes it so good. The AP is working and since you posted on the rheumatic-yahoo group it may also help people that are still not convinced about AP. I wish I had found out when I first became ill in 2005, three years later I found the AP and this site and it didn’t take too long to get my act together and take the right medication.
Congratulation 😀 😀 😀 ,
EvaEva Holloway
Could I ask why you waited till 2010 to get on AP? was there anything particular or symptom wise that made you cross the line and begin AP? The reason I ask is that I also have an ANA of 1:640 with Anti-RNP with zero symptoms apart from mild Raynaud’s and I’m still resisting on going towards AP. I do take a very focused supplement regiment for which I attribute my stable condition for the past 2 years.
Also a note about ANA levels, they are not necessarily comparable between laboratories and are usually not useful in assessing disease activity. I wish you the best of luck with your Echo, which I feel will be the true test of AP.
I learned about AP in 2009 and waited til 2010 basically for 2 reasons: 1) I am an outdoors person, spend a lot of time in the sun and was worried that I wouldn’t be able to handle the sun sensitivity. That turned out not to be an issue at all. And 2) I guess it just seemed like a long term treatment that I wasn’t sure I wanted to get into. But when I saw my echos were going up and up, I got scared and said it’s now or never.
I love reading posts such as your post. It’s incredibly encouraging for me to see someone getting better with AP. Congrats!! What a nice way to start off a new year!!!!!
Take care, Sheri
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