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It’s been awhile since I last posted here because for the most part I have been doing well on the AP & am extremely grateful for the treatment and excellent advice found on this board.
I was dx’d in 2000 with systemic scleroderma, started AP (minocycline 100 mgs twice per day) in January 2001. I was doing so well that I was able to complete a marathon in 2013 (very slowly!) and thrilled to collect donations for RBF.
In Dec 2018 the skin around my mouth started turning grayish-blue. My teeth and gums had already been turning grayish-blue over time. My rheumatologist told me to stop taking the minocycline, so I did. As a non-AP believer, he wanted me to try methotrexate or Cellcept. Up to this point I never had to take any such immunosuppressant drug, so I told him I wanted to wait. As you might expect, symptoms have started to return such as skin tightening on sides of torso, belly, hands, wrists. In the past week or so, my hips have been very sore. Shoulders are popping/crunching. I am a yoga teacher and it is now a challenge to get up and down off the floor. I suspect I may have RA as there seem to be nodules on my collarbones and fingers. I am also extremely fatigued.
Since my rheumatologist is a traditionalist and doesn’t believe in AP, I went to a naturopath doctor who prescribed azithromycin, which I recently started.
I am considering pulsing minocycline since it worked so well for me (in spite of the blue skin issue), say, MWF, and azithromycin the other days. Thoughts on this?
Do you have thoughts on Methotrexate vs Cellcept?
Thanks so much.
2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | SynthroidHi Jae,
Very sorry to hear of your relapse. AP isn’t a “cure” for SD but can induce remarkable remissions from disease activity, as you experienced. What some people will do when they experience hyperpigmentation from mino is to get IPL laser treatments from a cosmetic dermatology place and lower their mino dose (if in sustained remission), or simply switch out to doxy for 6 months to a year, feeling it’s just not worth the risk of relapsing. Of course, hindsight is a fine thing, eh?
Some people with SD do okay on a azithromycin alone, but it doesn’t have the same immune-modulating effects as tetracyclines to modulate collagen overgrowth, so others will combine doxy with azithromycin. Rotating antibiotics, even within the same class (e.g., mino to doxy) every 5-6 years is suggested in the doctors’s packet if I’m recalling correctly. This is thought to help avert tolerance issues. So your thought to pulse mino into your protocol might work very well.
Did you find your hyperpigmentation issues resolved in this past year while off it? Did you try anything like IPL or Vit C?
Hi Maz,
Thanks for your response, Maz. I’ve added daily vitamin C & the discoloration has improved but not resolved. I did try doxy for awhile a few years ago & it didn’t do much for me so I went back to mino. I read somewhere that doxy can cause the blueish-gray hyperpigmentation as well.2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | SynthroidHi Jae;
Broken capillarie are caused by hypercoagulation.Have you read the into on Inspire done by Choclit9www.sclerodermainfo.org) he explains how red blood cells stick together,clog the capillaries and because the blood can’t flow it makes them burst.His TPE treatment works wonders and is the way SD is treated in Italy.I used Nattokinase which works to un-stick the red blood cells just as well as TPE.Read up on Google….benefits of nattokinase…. for explanations
I had pretty bad discouloration on my face and under my finger nails.Vit.C and niacinamiDE help as does moving to doxy or a lower amount of mino butI have been at it for 4 years and still have light markings.Since you were in remission maybe a lower dose will work once you get back to where you were.I take 1 doxy every other day and the SD has not broken through.If I get over tired it will try but I can feel it coming back and revert to 200mg a day,several days of this and I am usually fine.
Remember that are blue markings are not just on the surface,it penatrates tissue deep and fades as old tissue wears off .Lazer works faster for sure but I have heard from others that the blue comes back which should be normal as the person who does itcan’t go too deep.Thank you, Lynne. I will look into the information & your suggestions.
2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | SynthroidMaz. what does it mean that tetracyclines modulate collagen overgrowth?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousI’ve taken the combo of mino/Azith/Cellcept/tinidazole/ldn with no problems, but everyone is different. My symptoms came on hard and fast. Originally, I just wanted AP, but with lung issues and very fast skin hardening , I nearly lost use of my hands… I felt I needed to take faster action. Any choice made will take time to see results. So IMO it’s all a gamble and highly case specific.
I don’t think there’s a one size fits all solution.Today, 16 months later, I’m doing much better. The disease is slowly turning around. I see new, positive, progress every few days. This week, one of my fingers is slowly starting to straighten and another finger is getting wrinkly and softer. Every week, I’m gaining hand strength and can cut up harder, larger vegetables and lift heavier pots. I cut up cauliflour a couple days ago! I’m still overjoyed at that. 🙂 It’s a very slow progress for the collagen to break down sometimes. If you see fast skin hardening, I think it’s good to do as much as possible to halt the progression, as quick as possible. I found IV’s of Clindamycin helpful too.
I’m obviously not against Cellcept because I take it but I don’t want to stay on it forever. I’ve read many good reviews of it on the Inspire website. If your body tolerates it well, it can be quite helpful.
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, this is helpful. I’m glad you’re seeing improvements & tolerating the Cellcept well. In my case too it is worth considering the heavy hitter drugs, even though they scare me. For RA symptoms my rheumatologist may prescribe methotrexate. Have you tried that drug?
Being able to cut up cauliflower is cause for celebration, congrats!
2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | SynthroidNo, I haven’t tried Methotrexate but on other message boards you can do searches and get plenty of info on other’s experiences.
I was scared of Cellcept too and being on an immune suppressant. It’s just didn’t seem like something I believed in but I tried numerous healthy, non toxic, holistic things including strict dietary changes and non of it made a dent for me. It was like trying to stop a speeding train laying a few branches on the tracks! Now I regret I didn’t start a couple months sooner… Now, not everyone is like that and online you can find plenty of info on what others have done. On fb there is a Scleroderma and Functional Medicine group that offers plenty of insights. I’m just stating what I’ve done to start healing and have some quality of life again.
I got a IND on a lyme test and feel certain I was exposed at some point even though it doesn’t come up positive. I really don’t want to waste any more money on testing.
On Cellcept, I haven’t been sick at all. I touch shopping carts w/o cleaning them and my other family members don’t get me sick. I can hug sick kids and not catch anything. I see no difference in my ability to fight off germs. I had a blister from trying to shovel and it was mostly healed in 5 days and 100% gone in 9 or 10 days. That’s just me. Maybe it affects others different?
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
I appreciate the feedback about Cellcept, Luck & thrilled you’re having success. We’re all on individual journeys as we fight autoimmune illness, no two are exactly the same & what works for one, may not work for another. Thanks!
2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | Synthroid
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