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Has anyone taken 150 mg at night and 50 mg. AM.? I am starting week 3, month 7 with mino and now reached 150 mg., 100 at night and 50 mg.in AM. Still experiencing lightheadedness with 50mg.in AM and of course sleep through the night dosage without much problem. Lately my skin has been itching internally for a couple of weeks… The myofascia therapist believes the fascia is realigning and maybe the itching is healing. This time around I am having tremendous joint tightness in my knees, ankles, and hip flexors. Still having that tiny squeak sometimes in my trachea or vocal cord so the therapist is working on the tightness of those muscles. Sure hope this squeak does not mean there are breathing issues as I have been clear for these past five years. Little energy remains a constant. Thanks for all your kind words.
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,Hi Wendy,
What is your diagnosis (the illness being treated)?
“This time around I am having…”
Does that mean that you were on minocycline in the past and stopped taking it?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPlease see the post (link below) which details how to put all this information (re diagnosis, current treatment, dates etc) into a signature which will come up every time you post.
https://www.roadback.org/forums/topic/your-user-profile/
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)Systemic Scleroderma diagnosed June 2012
Mino May 1, 2016
Previously on cellcept and was in ‘remission’ 2x….due to possible rare side effect of a corneal ulcer from cellcept in Dec. 2015, rheum Was willing to let me try mino and very gradually increase dosage from 50mg. 3x a week to current level. At time of starting mino, was just beginning to feel tightness in trunk of body..have had symptoms of scleroderma in joints and muscles never had on cellcept.
Phil, thanks for responding.Systemic Scleroderma
Mino 50mg in AM, 100mg at night, Valtrex 1x a day due to shingles in same eye Feb.2013 ( now have neurotrophic cornea and have lost partial sight in r.eye due to shingles 3x in eye and the corneal ulcer) Tylenol for pain,Valium 2 1/2 mg at night, levoxothyroxine 100mcg 1x a day, magnesium 200mg 1x a day., probiotic,Mucinex as needed, almost gluten free dietSystemic 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 I have always taken minocycline 100 mg in AM and 100 mg pm –not really sure of the advisability of 150 mg at one time –when I first started I too was lightheaded and nauseous -mine cleared up in a few weeks –I think yours will clear up also —Perhaps for morning eat first then wait two hours then take the morning dose -that helped –ALSO –the doctor I used up at Harvard always felt the itching was a very good sign of the skin healing from under –I itched like mad for about a year –did get some relief from an over the counter product called SARNA —I would add its all worth it –been in remission for years now —I still take 200 mg daily of the minocycline daily to prevent relapse –its now 17 years –no problems -no side effects —just take enough probiotic daily —good luck
richieRichie, thank you. I am taking the morning 50 mg dosage around 6:30 or 7 AM with a couple of spoonfuls of non-dairy non sweetened coconut yogurt. Eating a full breakfast a couple of hours after that AM dose. I have tried reversing by eating breakfast first and waiting the time span to take the morning dose, yet there is no difference with the lightheadedness. The lightheadedness is felt about three hours following the medication lasting for about an hour, yet not entirely going away during the day. After 6 1/2 months would think it would go away. I am beginning to wonder if my body is not receiving enough oxygen so am practicing lots of deep stomach breathing as I continue to have phlegm in the morning even while on the Mucinex.So appreciate your thoughts on the itching!
Did you experience joint/ muscle tightness, difficulty walking as you worked through to remission? One morning perhaps I will feel good and normal for the entire day as I did 4+ years ago.
WendySystemic Scleroderma.
Mino 50mg in AM, 100mg PM daily, 1 Valtrex a day, 200 mg magnesium,100mcg levoxothyroxine 1x daily, Tylenol, 2.5 mg Valium at night, probiotic,multi vitamin when I remember,Tumeric capsule 480mg 1x dailySystemic 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;
Taking your mino with yogurt won’t wok,you have to stay away from vitamins and minerals especially calcium until a couple hours later.Like Richie I took 200mg a day for many years.Once in full remission for a couple years I have been able to drop it to 100mg a day and then 100 every second day.18 years on AP at the end of this month and doing well.Every now and then when I get severely over tired or stressed SD wants to come back as I get the burning in my hands.When that happens I just double up my dosage for a few days and get back to normal.
I was never able to take the mino without food,usually toast an coffee with fruit.One loses about 15% of it’s efficacy that way but it worked for meHi Wendy,
The itching was the one symptom that almost drove me mad. Scratching one area triggered a body-wide spread of the itch and scratching didn’t relieve it at all as the itch seemed to be deeper than the superficial layer of skin. I used the store brand (CVS, Duane Reade, etc) lidocaine spray and that kept me sane. It seemed that the “better” brands contained more oil and made things worse as did most oils and creams.
I had dizziness and nausea when I first started mino and it took a while to go away. They weren’t related – in other words, the nausea wasn’t due to the dizziness. Having a few dry crackers when I took the mino helped enormously and both problems went away eventually although it took several months, probably 6 or more.
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsHi plenty of muscle soreness and aches and pains –actually I was pretty sick and those were the least of my problems –but everything cleared up —the last problem {severe contractures }took about three years or so —
Wendy, I have never tried Mucinex, but NAC has helped me to get rid of the phlegm.
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 heterozygous
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