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Why would a doctor want us to quit taking it ? I was told to stop it but I do not want my scleroderma to take over my body again. I ,also ,experienced the generic does not work as well so I alternate generic and compound each other day.
This antibiotic protocol has allowed me to do things I was not sure I could ever do again.Hi,
Which generic are you taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinSiouxzie
I am wondering who you are seeing doctor-wise who is recommending that you quit AP? Has he/she given you reasons? Sounds like someone who is not AP literate perhaps?
You may like to search the posts of richie, Randy, JeffN and others who have been on AP for SD for several years. Believe they have got the co-operation of internists and other docs to continue to prescribe if they are no longer seeing an AP DoctorBe 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 The relapse possibility in scleroderma is rather high if folks stop taking the minocin —I have been taking it for 15 years now –I also take a large dose of probiotics daily –result –no problems at all — Lynnie is quite right –my internist now prescribes my minocin —
richieFrom a patient perspective, I agree with all of the above. I have a friend with SD, and when she stops doing AP her skin begins to tighten again almost immediately, then when she begins AP again, it retreats.
Just a patient opinion, but I think most of us need at least a maintenance dose for life.
Hi I would hope your friend got the message –if she stops for sure she relapses !!!!!!!!!!!!!!!!!! One of the main points in taking minocin or minocycline is that it is such a benign treatment that for a person with scleroderma to stop taking it –makes no sense at all- imo —I take a blood test yearly for kidney and liver function and take a good size dose of probiotic daily along with 200 mg daily of minocin and thats it —Its not a guarantee against relapse cause there are no guarantees but its the next best thing !!!!!!!!!!!!!!!!!
richieI am with Woods 100% .When we could no longer get brand name mino anymore I was given a generic called APO
within weeks I was getting all my original symptoms back and had to go on prednisone for a few days to get the inflamation down.It only took 2 weeks on Teva to get back to normal.DO NOT Stop YOUR MINO until things have been normal for some time,then you can change to doxy if you wish.I did because of severe skin discolouration on my face.I now take 100mg of doxy every other day and doing fine at the 3 month make and the dark patches are 10% lighterI have been on generic Watson brand mino for going on eight years. Several years ago even Dr. T suggested I reduce dosage, I guess I gave him a look because he immediately said “of course it is a two way street and many continue”. At any rate a couple of years ago I began to reduce dosage on my own. Eventually reduced to 100 mg a day, then every other day, then was down to 100 mg three days a week. Again this was a two year process IIRC. Late last winter or early spring, after three months on three days a week, I began to ache a bit and redeveloped shooting pains in my wrists and ankles. I promptly went back on 100 mg a day. Everything has returned to normal thankfully. I am not a medication guy if I can avoid it and have some dark spots on my face so that is why I tried to reduce – right or wrong , my call.
Late spring I began seeing a new doc, an internist. His back round is cardio/pulmonary and has seen SD patients in the past. My appointment with him went very well and he is now my mino source. When I saw him I told him about my reduction attempt and my increase to 100mg a day and asked him what he thought. He told me that I would be the best judge of what my dosage should be as I would be most aware of my patterns. As I have been doing well on the 100mg per day I will continue with this program, if I feel I should go back to 100mg x 2 per day (original dosage) I will. As Dr. T has retired I have seen a new Rheumy and he too was OK with the mino. I will probably check in with him every 18 months or so. I never went back to BI after Dr. T left.
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