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Feeling well and thankful that I found AP. Thanks to all of you that have been so supportive over the past four years and provided a wealth of knowledge about SD in general and AP in particular. Could not have “made the trip” without RBF.
Jeff, this is tremendous news and so happy to hear you’re feeling so well.
Thanks so much for posting about your success with AP for your scleroderma. It’s people like you who are like shining lights that really help newcomers who are anxious and don’t know if the therapy will work for them, too. Also, that it might be a long road back, taking lots of patience, but it’s one worth taking.
Are you up for writing a testimonial yet, do you think? Would love to do a profile of your story for the eBulletin, if it’s something you would like to do and you’re ready. 😀
Congratulations!
So wonderful to hear that you are doing well 4 years into therapy. It’s almost like a ‘rebirth’-day! 🙂
Hope you continue feeling wonderful for 40+ more.
A
Jeff,
You are such an inspiration to newbies on here, as well as those that have been here for a while. I wish you continued success and healing.
Maria
Congratulations Jeff – so glad you are feeling well and thanks for posting this. 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)Jeff,
Happy for you! Thanks for keeping us posted. We need it to get the confidence in what we are doing is right and prepare to be patient.
Jeff,
Thanks for the note and congrats on your 4 year anniversary. It is a pisser that you and me and many others have SD and other AI’s. However, living with and beating our AI’s is possible because of heroes like you that go out of their way to continually encourage all of us. You are a fine example for us, and you have really helped me out!
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"Way to go Jeff 😀
I followed your posts closely as I have been on AP for the RA for 3 years and also doing so well. I feel eternally grateful as well to this board of cyber friends!A toast to you !
Patti
are you in remission? if so for how long? im just trying to get a handle on how many people are successful around here. thanx!
I don’t know if it is a remission or not as I am just a tiny bit away from normal bloodwork. I feel great, my old self actually almost all of 2010. I am doing all of things I used to. My Rheumatoid factor started at 220 and has over the last 3 years steadly declined to now 22. Normal is below 20 so you see I am right there.
I had a day with a stiff painful hand this week(was – 22 with the windshield factor) but it is gone, just like it came. So I am hopeful. Hang in there. Patience is required and take those little victories and run with them. 😀
I am sending extra well wishes your way!
Pattiim just trying to get a handle on how many people are successful around here. thanx!gordbentley
Gord – fact is, most people, when they get well, dont visit the Forum any more. Which makes great sense, because they’re out living their lives. A few pop by very occasionally. Most people here are still a ways from being well or just starting out. That’s why we like testimonials from people before they fade away, so that we can keep the list up-to-date as it’s so importrant for newer people to read what’s possible. Have you had a look at the Testimonials on the main site Gord? There is also always a current success story in the quarterly e-bulletin in what’s called Remission Corner. LynnieBe 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)Jeff,
I am thrilled for your success with AP! I too am another success story, although I’ve been on AP since 11/09. Are you now on a maintenance dose?
First off thanks for all the kind words folks.
Gord I am cautious about using the “R” word. I was ten months in before I would even let myself think that I might beat this thing. I can say that even though my first several months on mino was clouded by the complication of GAVE. So I really did not get a mino vs SD view of things. I was so anemic that I had all kinds of issues. I can say it is my opinion that, none of my SD symptoms got any worse once I began AP and I improved from there. The first step to getting better is to stop getting worse I feel. My Docs solution for the GAVE was to give up all NSAIDs and by June my blood numbers were almost normal. My personal history thread is presently at the top of page 4 here and you can get an idea of where I was. I have not updated in over a year but will shortly. Vonni at this point I have not reduced my dosage, I am still on 100mg twice a day. Dr.T spoke with me about a reduction when I went for my appointment in May. I don’t have to go back for two years by the way. Frankly I am unsure what to do at this point. I do not want to backslide. I am 60 years old and am not a pill person by any stretch but I have to wonder what the harm is at my age of continuing full dose. In my time I will decide. For now all the plus points for reduction are countered by the unkown and fear of going back even a little. As to my present status I am still seeing improvement from time to time – little things usually. I still need a good nights sleep but don’t sleep 16 to 18 hours a day any more and rarely nap during the day only once in a while on a weekend. My joints are in better shape than then have been in decades, I am an electrical contractor and really have little problem being on the job all day climbing stairs, ladders, and such. The tendons in my legs around my knees are still a little tight but I may not ever get that back although many of the other areas that were tight are not anymore.
In short I have almost all of my life back, I am doing almost all of the things I enjoyed before my SD went active. I feel my days as a hack surfer are over but will try it again some nice summer day, I am back snowboarding (I had to take one year off), I did go diving again, so life is pretty good I feel. Having my hands back is a joy, SD does not define me anymore like it did for a while. As I said I am cautious about using the term remission but call it what you will. I am just happy to be where I am.
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