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Hello,
I hope someone can help me with this. I’ve been on AP therapy for about 3 and half months. I think my face in getting softer but I’m noticing more hardening, tightening around my ligaments, tendons. Is is normal to be on AP and have one symptom improving but another one getting worse ? I’m not under a care of an AP specialist, just got the prescription from my GP so she can’t really answer my questions.
Thank you!Hi Mia,
Patient experience has been that for SD patients, for the most part, the first year is about slowing down the freight train. Of course, individual experience differs, as lots depends on age, severity, length of time a person has been sick, other meds being used, etc. So, there are many variables.
It might help you to read through all the SD patient stories in both the Henry Scammell book and here on this site.
If you hang around here on this forum, you’ll find other SD patients on the therapy and what they are doing to support their AP. There are some very helpful supplements, like N-acetylcysteine to protect the liver and lungs, systemic enzymes to break up scar tissue, probiotics to replenish good bacteria in the gut, etc. It can be unnerving going it alone, so you should begin to feel more confidence in speaking with other experienced SD APers. AP is a bit of a 3-step fwd and 2-step back dance all the way to remission.
Thank you Maz, I appreciate you taking time and replaying to my post. I will definitively look for some scleroderma posts. This site is very informative.
Hi, stick with it. The skin tightening was moving at a frightening pace and kept progressing for the first 4 months, even after starting AP and Cellcept. I also did clindamycin ivs and abx rotations early on. It really depends on how fast the disease is progressing. If it’s slow, it might be ok to hang in there and wait, but if its quick and you have internal organ involvement, more action might be necessary. It’s best to work with a rheumatologist and have your lungs and possibly heart checked. It’s possible to have lung involvement and not know it! I did. On a ct scan, they found involvement. Others cant really give individual advice but it’s good to have a team of drs looking out for you.
On facebook, theres a group called ‘Scleroderma and Functional Medicine’. There are people there doing AP and different degrees of mainstream medicine to control and hopefully improve their lives. Don’t be afraid to do both. Some are able to make huge strides with diet and its wonderful when that works. I will say, skin hardening can take quite awhile to break down and if its progressing fast, it needs to be felt with in a combination of ways. It takes longer to go away than develop.
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
Fyi, I’m getting much better now and I’m so glad I stuck with it. You can do a search on my name for more details on my story.
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
Thank you Luck20 ! Cellcept was suggested for me from my rheumatologist and i will start that in February. I’m glad that it’s ok to do both Cellcept and AP therapy. Since I’m progressing I wanted to stop doing AP before Cellcept but after reading this forum and your response it seems like some people do both. I get Echo and Ct scan on my lungs yearly and they are ok, I’m mostly suffering with skin hardening.
I’m very happy for you and your wonderful progress, this disease is awful and I’m so glad to see you conquering Scleroderma.
How long did it took you to start noticing any improvement ?It took me 4 months to see any positive signs and changes. The hardening was starting to creep above my elbows and my arms were stuck at 90 degree angles. Now there almost totally straightened out again. Anything takes time. I’m not sure which helped first but the most important thing is getting better. I highly recommend the ivs of Clindamycin too. It stopped the progression in my feet. I also did the Plant Paradox diet for awhile. I’m not sure of the safety longterm but a month or two of it at even 90%-95% adherence might slow down the hardening if you feel adventurous. It’s hard and pretty limited.
Hope you find something that helps!
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
That is really amazing that your arms were able to come back to normal. I mostly eat sugar, gluten, dairy, egg free diet but I will look into Plant Paradox, like you said month or two might be a good idea. Do you have a high CRP levels ? That kinda confuses me. It seems that people mostly have high CRP levels, mine are at zero.
My crp and sed were fairly low and in range. They went down a bit but didn’t appear high before or after treatment.
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
It took about 17 months for my elbows to loosen. It only took a couple months for them to lock into place…. One arm is still a bit shorter, but it’s not too bad. It takes time to turn around things. Not everyone has the disease come on as aggressively as it did for me, but if it does, I really can’t stress enough that healing takes time and if things are going downhill really fast, swift action is needed. Dietary changes are great, but for some, finding the right meds is critical too, especially if theres internal organ involvement.
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
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