Please help with knowing whether AP Is working!!!

[lanolin]

I’m on week 5 of AP for scleroderma and am on 50mg of minocycline twice a day on MWF. I only have skin involvement at the top of my hands and have been monitoring it closely. The last week I have seen the area actually increase about half an inch. I can see the shiny patch spread. The entire area may have softened a bit generally. I am extremely cautious to declare anything positive, but the skin seems more pliable. However the increase of size of the patch has me ready to give up already. Every story I hear has such positive changes within days. I fear I am one of the people that AP won’t work. I have swelling of hands and feet and some joint pain. Joint pains seem better. Swelling of hands and feet seem to be same if not minimally better.

Please. Anyone with scleroderma experience – help. Is the increase of size of skin patch a sign to stop and seek traditional treatment?

[lynnie_sydney]

Hi lanolin
I’m sure Richie, Lynne and others with SD will respond here. I know they responded to your other question about remission.

But just to say that, after 5 weeks, you are at the very beginning of the journey and it is WAY too early to be thinking about AP not working and giving up. Suggest you read some SD testimonials on the main site and also, if you haven’t read it, the Scammell book Scleroderma: The Proven Therapy that Can Save your Life.

Also, have you seen this recent thread?
viewtopic.php?f=1&t=12754&p=79663&hilit=scleroderma#p79663

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)

[lanolin]

Thanks Lynnie. Looking forward to hearing from others. I haven’t read the book yet it hope to get it and read it.

[richie]

Hi Changes within days –where would you have seen that –this isnt a miracle approach rather a long haul —
richie

[kater]

Lanolin
please be patient with your treatment plan and yourself <3 This is a very slow road and a long haul. You may feel much worse before you get better, and also slowly and as your doc suggests work up to the full dose of 100mg twice a day. I also do clindamycin IV and lots of diet and supplements and things to support healing in general. Generally people don't see a lot of improvement before 6 months or so and remission may take 3-5 years. I got there in 3 but having a bit of a flare right now. Hang in. Don't give up! Go back and re-read the testimonials. It takes time but it works for most.
cheers, smiles
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[lanolin]

Thanks guys. I know it seems like it’s different for everyone but I have read testimonials where they noticed changes within days.

Good to know as I press onward.

[Lynne G.SD]

Hi Lanolin
Some people do have slight changes in a few days but usually things just revert back to where they were and then take
a jump forward a few months later.AP is basically 1 step forward,one or two steps backwards,then later 2 forward and one backward.This is the usual scenario for the first couple of years.At the beginning one can have a bit less pain and brain fog and we just think it’s fantastic but know it is a long way from remission.
I am 16 years 7 months into AP but only stay in remission as long as I take at least 100mg of mino every other day.Since I am feeling so well I often just forget to take it but after a week either the Lyme activates and then I get burning hands and feet from the SD

[lajc]

Hi Lanolin,

It took 7 months for me to notice small improvements, but they felt HUGE!! The tightness in my neck and around my eyes had begun to soften, I no longer needed Motrin or Tylenol at night to help with sleep, and a lot of the brain fog had lifted. The tightness in my arms, legs, and shoulders have taken 4 years to to loosen up. I wish I could say the same for my hands…..they aren’t budging! Sometimes I feel like it has taken forever but I am still making progress, and I have had no further progression of the mild pulmonary fibrosis. It is a long, slow journey and different for each one of us. Try not to compare your progress with others although I know that is hard to do. Hang in there and stay the course…..you will see improvement.

[lanolin]

Lajc and Lynne.

Thanks for your responses. Always good to hear of those doing well.

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