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On minocycline, does anyone know the number of individuals in remission with Systemic Scleroderma? My adult son asked me this ? a few days ago. Mid month 10, always in pain,nail and skin problems continuing, massive tiredness and no energy, calf and leg pain make it hard to walk upstairs or more than a few aisles in a grocery store.Raynaud’s attacks frequently. Rheum. Appt last week, skin score has diminished to a 2 or 3 in tightness in some areas. Anyone used Razioli for building up immune system…suggested by an aquaintance a few weeks ago…
Thank you for reading.
WendySystemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,Hi Wendy;
I have been in full remission for 15 years.Are you a member of the Scleroderma Foundation by any chance? If so go look at their Inspire discussion Forum. Kelly Ann did a post Bats out of Hell 2 that has a list of over 200 members in remission or doing much better.Hopefully I will have time tonight to do a post on how antibiotics work,it will be long and have a lot of links so you will have reading for a few hours.I have a total of 6 years human and vet med along with degrees in paleoanthropology and archeology so I can usually find great stuff and as far as I am concerned AP is the only way to go unless one prefers to eventually die from side effects of immune suppressants that leave you open to infections that can’t be fought off very easilyHi If you are taking the magnesium too close to the minocycline –you have wasted that dose of the antibiotic because the minocycline will bind to the magnesium and render it useless -are you taking a calcium channel blocker for Raynauds –I found it helped tremendously –also you must keep your core warm to also help Raynauds —–
Hi Wendy
Have you read the Scleroderma Stories? There are quite a few pretty recent ones from people with SS in remission on minocyclinehttps://www.roadback.org/stories/?diagnosis=scleroderma-2
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)HI Richie, and thank you. No, Magnesium is taken at least 4-6 hours after minocycline. We have not found a calcium channel blocker that works for me yet so know that is the reason for more Raynauds. I named yours to the Rheum. Last week, another recommended he would not prescribe due to kidney and heart needing to be monitored frequently. Once again will try for that extra 50 mg. of mino…about mid day to see if body will tolerate that and then the 100 mg. at night in addition to the early AM mino. Having some indigestion issues and have started a prescribed pill for that. More later, thank you again for your support.
WendySystemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,Hi Wendy;
I accidentally posted the names of people who did well on AP.I can’t edit the post and asked Lynnie but it must be bedtime in Australia.Take a look at the second post on Skin/HairLynne, thank you. Yes, I did read what Kelly Ann wrote on inspire a few weeks ago. There is also someone in research ….goes by Choclit who had written more success with minocycline on Diffuse Scleroderma than SS. Have read many of the Inspire Stories and surely can identify with a few additional symptoms! Awful! I will try to,find the link to your last entry on hair and skin. However, must be the lone person noting tooth discoloration of gray/blue streak, supposedly takes place with children, not necessarily adults. Swishing with hydrogen peroxide isn’t helping.
More later…worn out from PT mid day. Again, thank you.Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,Richie, thank you! Even though I’d read a couple of booklets your clarification is so helpful!
Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,Wendy;
Niacinamide removes blue colouring from the inside out as it prevents melanin that gives the spots.It is even removing my 40year old sun/age spots.It will probably work for your eyes but not sure about the teethHi Wendy. I’m on my 8th month. I am struggling with being able to tolerate a high dose. But rotate biaxian and doxy 100 mg bid every other day. Notice some improvements but worsening or new symptoms as well. I just tested positive for Lyme so that might be causing issues as well. I get burning all over with the antibiotics. Both antibiotics cause this!! It’s a struggle but don’t lose hope. I haven’t.
Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x dailyI just tested positive for Lyme so that might be causing issues as well. I get burning all over with the antibiotics. Both antibiotics cause this!! It’s a struggle but don’t lose hope. I haven’t.
Snglbear, I’m sorry to hear about your Lyme diagnosis but hopefully it’s “better the devil you know,” so to speak. Here’s to the improvements, however slow!
Lynne, I will check w/ my dentist soon! Thank you..No blue spots…just streaks on the teeth
Trying to read some of those articles from those links…..for myself it is like reading a foreign language!
Wonder how many mg of B12 to buy? The PT doing myofascia release therapy said I would have neuropathy in my feet if B 12 was really low…don’t have that… Just terrific ankle weakness and the loss of padding from the bottom of my feet so of course my feet hurt.
Thank you again, WendySystemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,Hi Wendy;
Sore and weak everything is normal for scleroderma.The fat padding on your feet is also normal and if you have had this disease long enough you will see that all sub dermal fat dissapears.Mine never came back even after all these years of remission.I have no fat and no collagen in my skin.It just sits there on top of my muscles.At least I have the strenght to work out a lot and that increases muscle mass so things don’t look too bad.I hate to think what I will look like when I ger to old to do so. heheheHi Wendy
Did you read my post to you on the other thread about your teeth? I had an awful problem with this but with 4 hours cleaning the hygienist got it off. It is from bacterial die off and has not recurred significantly. I take Vit c and K now to prevent.
I am in remission — still have a lot of fatigue but other than that pretty good. I also have Lyme, myco p and who knows what else so body is always working overtime. Have you tested for Lyme? I would suggest it
good luck
kateSystemic 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
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