Hand fibrosis changes in Scleroderma Remission

[Luck20]

Is there any special pattern to how fibrosis breaks down in the hands as AP starts to work? Do some parts soften faster than others? Do the fingers take longer than the palms to soften?

Does anyone in remission have any observations on this?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Pinkmoth]

hi luck,
when I first started AP 2 years ago my fibrosing hadnt progressed much, was still in the inflammation stage. so I can’t be much help there.

but I am also interested in the answer to this question, as I’m starting to get more fibrosing in this current flare.

are you noticing any changes?

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Luck20]

Yes, their changing every few days with more wrinkling and the areas around my knuckles changing back to skin texture. The skin is starting to move and my wrist range keeps increasing. I also feel more pivoting in the forearms and coldness move through the once locked up joints. Its an amazing feeling to feel the joints open back up! Its a very slow process but they were locked up tight and stiff. I’ve lived like this a year. Any increase in range of motion is noticable because I was barely functioning for so long.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Pinkmoth]

sounds like you’re moving in the right direction, luck!
what were the initial downhill changes like and how long did it take to become barely functional?

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Luck20]

Barely functional was at my worst point, good thing I started on Mycophenolate and then Mino and other antibiotics a couple weeks later. Things started to slow and I didn’t lose full use of my hands, thank God. Everyone credits different things for working.

My first signs were skin softening in skin just starting to get hard above the elbow. Then I saw a slight softness in the forearm.(nothing in the hands and fingers)The skin on my forearms could be pushed in a bit vs rock hard. It was a scary time, but I kept calm and made it through. My fingers are still curled but are starting to wrinkle and shrink a bit and move back and forth easier.

I look every evening for signs of hope and record them on a calendar. Everytime I get discouraged, I review the changes and look how far I’ve come.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

I misread pinkmoth.

The initially changes were bilateral hand swelling. First, it started in the evening and was gone by morning. Slowly it increased to more frequently and then all day. I was praying it was a hormone or thyroid problem but that didn’t turn out to be the case. I knew I was in big trouble when my face kept getting tighter and morphea appeared on my legs.

This was a year ago and it still hurts to think of it. The only reason I’m talking about it is in case someone with the same symptoms sees this and they can prevent what happened to me and they can get help faster. Its hard to locate a dr to perscribe mino, but maybe if they went to a dermatologist with a pimple or hint of rosacea and insisted on mino, they could slow down the progression until they come up with a solid game plan?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Pinkmoth]

thanks for the reply, luck. you are really turning it around and you give me a lot of hope

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

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