New here …3rd month of pulsed minocycline

[Wendy]

First time attempt ….I am about to complete 3rd month of minocycline. This past Monday had my rheum.appt.; disappointed & painful my skin score at 0 (perfect) in April is at 10…moderate scleroderma w/ skin tightness affecting trunk area, hips,thighs and ankles. Skin so tight that feels as if skin in rib cage and arms will tear reaching for top cabinet shelf. Gradually increasing the 50mg. Of minocycline to 5 days a week…lightheadedness still the immediate side effect for a good while. So drug sensitive Drs. do not think at 105 lbs. the body will take 200mg a day. For past 3 weeks have been having post nasal drip and coughing up white w/ sometimes yellow bits of phlegm in AM…while I have been reducing the amount of Mucinex to 1/2 pill a day to avoid dry eyes, I did not have this reaction when on cellcept. Anyone else experience this ? Rheum thinks allergy as lung function and heart function tests have been clear since 2012. Bloodwork was taken Monday so do not expect results for a week or so. Massively fatigued all the time, can barely walk my driveway as Scleroderma has damaged the pads on my feet….take 3 1/2 Tylenol in 24 hr. & about 3 mg of a Valium pill at night to reduce muscle and nerve pain. Recently was told about Marinol for pain, but reading of it seems like a derivative of Marijuana pill ( no,thank you).
This is my 2nd flare of Systemic Scleroderma. My Rheum.agreed to the Minocycline due to a rare side effect of cellcept possibly causing a corneal ulcer in my R. eye December of 2015….sight has not returned as bacteria burned through 3 of 5 layers of cornea. Thanks for help!

Meds
Minocycline 50 mg. 5 days a week,Valtrex 1 500 mg 1x a day, Levothyrixine 100mcg 1x a day, Valium 3mg 1x at night,Synergy Kombucha as Probiotic drink, Tumeric capsules 2 per day 230 mg, Magnesium 200 mg 1x a day

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]

Hi I was pretty good at solving some of sclerodermas annoying problems —Scleroderma for some reason takes away the padding at the bottom of your feet –it did mine —Solution –two approaches -one quick fix is use gel pads in your shoes —a more permanent fix is custom orthotics and have specified extra padding on bottom such as diabetics have —Mind you I am sure not a doctor but rather dealt with diffuse scleroderma successfully —my dose was and still is 200 mg daily of minocin –You said increasing to -50 mg five days a week -what dose were you taking –I dont prescribe to anyone but thats a low dose and evidently not effective for you or for that matter most other folks –Lightheadiness when you are starting is very commonplace –I dealt with that as well as nausea for about a month or so –you just have to deal with it —Suggest a more mainstream type probiotic –also -be certain the magnesium you are taking is far far away for the minocycline -if too close together the magnesium will absorb the mino –MY former doctor up at Harvard who really advanced this therapy for scleroderma started and prescribed everyone at 200 mg daily !!!!

[richie]

Hi I note you mentioned cutting back mucinex because of dry eye —Mucinex is guai which acts to thin out mucous –it absolutely does not cause dry eye –it is now ragweed season as well as other allergies –I have them too now and was told to take mucinex 1200mg in am and pm –no problems at all—

[Nikkoal]

Im only 3 months in, and I take 200mg Minocycline MWF and biaxin TThS. Have you had IV clindamycin infusions? Also, what brand or generic Minocycline are you taking? From what I have learned here, brand matters as well as dosing.

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