Minocycline for Morphea

[Lainie]

I've just begun Minocycline @ 100 mg twice a day. I asked my dermatologist to prescribe it after reading all the stories from RBF members. Can anyone give me an idea how long it takes for lesions and tightness to begin resolving after start of Minocycline? I have generalized Morphea Scleroderma that covers 75% of my body.

[isobelle44]

Hi Lainie,  I have been dx with Morphea.  I have been on minocycline since November same dose as yours. so i havent been on it very long.  I noticed a few small indicators that its doing something but its pretty suttle.  I have morphea all over, but was never told what kind of morphea i have.  And i didnt ask so i certainly cant blame my doctor for that.  It seems you need to be taking some probotics with it.  Ask your doctor about that, to ward off yeast or thrush.  I just got finished having something like that, wasnt taking my probotics faithfully.  Now i certainly do.  From what i have read it takes at least 6 months to notice a change.  I was wondering how they diagnosed your morphea?   Did they do a biopsy?  Do you have a scleroderma specialist?  Hope this helps,  Sharon

[richie]

Hi

IT takes awhile –the important thing is to give it time —While I had systemic scleroderma –very subtle improvements showed up after about 8 months or so –to get maximum benefit of the minocycline  try and not have any food or other meds for two hours before and two hours after the mino –just water or seltzer –Give it time –keep at it –dont skip doses –good luck –lots of folks around here to help with any questions

Richie

[Lainie]

Hi Sharon

Thanks for your mail. The RBF site has given me hope, with people like you who can understand what this condition is like.

My diagnosis was through biopsy in September of last year. My dermatologist wanted to start me on light therapy, but my insurance balked for months and only approved it recently. I've decided to go the Minocycline route instead though, since I've read so many good reports on this site. I've been taking it now for 5 days and have had some nausea, but I'm going to stay the course. Can you tell me more about the probiotics? In what form? I did see a new drink by Dannon, I think. Kind of a probiotic smoothie in a small bottle.

Elaine “Lainie”

[Lainie]

Hi John

Thank you for writing. I may have to switch to 100 mg/ daily too, since 200 is causing some nausea, making it kind of difficult to get through the work day. But I do have confidence in this protocol, after having read so many success stories on RBF site. We have actually taken some photos just a few nights ago, as a frame of reference and I think they will be helpful in monitoring the size, shape and distribution. I wish your daughter the best; I know it must be even more devastating to a young girl in the prime of her life to deal with this. But I'm so thankful that we're able to share information and learn what we can do to combat this condition.

Elaine

[Lainie]

Hi Richie

Thanks for writing. I was actually just thinking that I need to have food in my stomach, at least before, since I'm having some nausea. I'll take your suggestion of drinking water before and after, to see if that helps. I'm very thankful I found this site, after months of feeling like I was alone in this.

Elaine

[richie]

Hi

When I had nausea starting out I found seltzer even better than water –I would say give it abbout a week or two –if the nausea doesnt subside think about taking it with a few crackers,

richie

[isobelle44]

Hi Elaine,  Im so new to all this too.  I was dx  in September to.  I was told to take some kind of probotics but i dont really know to much about them myself,  I take a couple acidopholis and yogurt.  Someone else probably has better ideas.  I hope someone else chimes in, i can learn along with you.   Sharon

[Lainie]

So Richie, does your post imply that you had Scleroderma and now you don't? I have taken your recommendation of eating crackers and drinking seltzer water with my Mino dosage and found it quite effective. I'm back to taking the 200 mg daily dose with no problems, but looking into the use of kefir grains to offset any potential new problems.

Lainie

[richie]

Hi

MY systemic scleroderma in which I had a mean fast moving case with many many symptoms and complications is in remission due to the minocin —what will kefir grains accomplish instead of  taking a daily dose of a good probiotic

Richie

[Lainie]

So you don't see a benefit to the Kefir grains? I've only learned about them recently on this site. I just want to begin something that will ward off any problems with the daily Minocycline, which I've only taken for 2 weeks now. That's great that your SS is in remission! Keep up whatever you're doing.

[richie]

Hi

Its not a matter of benefit –but rather what is the advantage of kefir over  just taking a probiotic daily

richie

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