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Doing Nothing is Not an Option!
After being a bit discouraged from reading posts on another SD site, I decided it was time to release.Perhaps there are some who do nothing, just wait around, and as fortune may have it they go into spontaneous remission (skin softening) without internal involvement.
Perhaps I was on that course and I didn?t need to do anything, not even AP. On the other hand, if I had not dove into AP perhaps I would be continuing to get worse, much worse, and perhaps I would have had more internal involvement.
I just finished opening my car?s hood, checking the oil, twisting open the tops of a couple of quarts of oil with my right (worse) hand and finishing the job. Of course this is a simple job, but I couldn?t do it and wouldn?t have even considered doing it months ago.
Almost every day there are little things like this that aren?t worth mentioning when you?re healthy. But they are significant and noteworthy while you are getting better and beating scleroderma. Then there are the really big news like the great results I received at the Mayo Clinic last week: PFT, CT Chest, Echo, blood work all fine!, skin score down from 34/51 to 31/51 now, and according to a (non AP) SD expert who is very happy in what he is sees, my skin score appears to have plateau?d in the 30?s and months before the ?typical leveling out?. Apparently, all this bodes well for me, and he doesn?t need to see me again for 9-12 months.
Perhaps my improvement is due to AP.
Regardless, doing nothing is not an option!
I just began my 9th Clindy IV cycle, and SD is on the run.
Go everyone! Go AP! “Perhaps” AP?s beating SD?
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"[user=223]Randy[/user] wrote:
Then there are the really big news like the great results I received at the Mayo Clinic last week: PFT, CT Chest, Echo, blood work all fine!, skin score down from 34/51 to 31/51 now, and according to a (non AP) SD expert who is very happy in what he is sees, my skin score appears to have plateau?d in the 30?s and months before the ?typical leveling out?. Apparently, all this bodes well for me, and he doesn?t need to see me again for 9-12 months.
Randy, what terrific news!!!! “Doing nothing is NOT an option“…right on!!!!! You're doing it…you're beating SD and quite an inspiration to others while you're at it, I might add!!!!!! Thank you for sharing this wonderful news with us. 😀 I love reading your posts just because they are always so uplifting and bring a smile…like a breath of fresh air.
GO RANDY! GO BEAT SD!!!!!!!!!!
Peace, Maz
Absolutly Randy!! When Rheumy #2 told me WE would wait until my next appointment five months later to look at meds I knew I needed to do something. At that point I did not know what. During the next two months I did my research and began AP. That was almost two years ago now, great progress so far. I know what you mean by just being able to do simple everyday things again. I work in the trades so it has been great to get back at it and just pick up a tool, open a jar, even open a soda again. In short starting AP was a wonderful way to spend those first months after DX. Keep up the great attitude Randy. Get well!
Jeff
Congratulations Randy! It's so nice to hear that you are doing so well! You seem to be making great progress! You are definitely an inspiration to the rest of us! Thank you for sharing your story!
You da man, Randy! Great post, great progress, great determination.
Did the Mayo doctor give any credit at all to the antibiotics?
You have small children so I'm sure those functioning hands will get a workout assembling toys this Christmas, and I'm sure there will be no complaining from you. Enjoy all of your hard earned gains, and look forward to even more.
Take care…..kim
What a great result Randy and a great post. I'm with Kim. You da man! 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)Randy, one of the saddest things I've seen in the last few years was SD patients in the waiting room of a “traditional ” rheumy. They were in bad shape, one looked to me to not have long to live.
Trying AP is the route to go. So many SD patients just don't seem to be getting better. It's tragic. Keep letting us know how you are. Very encouraging!!
So great to hear your news, Randy! Your progress gives me hope and inspiration!
Take care, and enjoy the holidays with your family!
Suz
I agree completely Randy….Waiting around to see if you go into a spontaneous remission is not an option. My hubby and I have fought the good fight with a few rheumy in order to get me on AP. Doing nothing was not an option for us either…and I'm willing to guess that we on road back are not content to just sit around and do nothing!!!! I am so happy for your improvement. Score 1 for Randy and the big ZERO for SD!!!!
Jen
[user=40]Kim[/user] wrote:
Did the Mayo doctor give any credit at all to the antibiotics?
Thank you all for your nice comments.
Kim – Essentially, he is delighted about the softening, but believes that this may be due to me being part of the diffuse SD subgroup that tests +'ve for RNA polymerase III antibody and shows early softening. To that extent we will see what the blood test reveals about that in a couple of weeks. Between the lines, I believe he wants to show that the AP has had nothing to do with my seemingly good improvement.
None the less, he is a very very good doctor and SD expert. Hopefuflly we will make a believer out of him.
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"
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