Should I stop mino

[cookie]

Hi: my test results show a 1.2 out of 5 for C Reactive Protein. Very low inflammatory markers. My Rheumy said I could stop the mino if I want to. I’ve had RA since 2005 and hesitate to do so. My RA affects my wrists and my range of motion is limited. I have a lot of discolouration.

Question is I’m not sure if I should stop completely or wean myself from mino. It keeps me free of pain.

I switched to doxy about 7 years ago but it had no effect on the pain. At that time only one wrist was affected then the other one became worse when I switched meds.

Such a quandary!

Thank you!

Diagnosed with RA in 2005. Taking minocycline M W F. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, magnesium taurine, curcumin, msm, GLA, vitamin C, glutathione capsules. Using topical ointments for pain such as Voltaren. Drinking lactose free milk, eating lean meat such as chicken and fruits and veggies. Exercising 3 times a week.
My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes which is very distressing. Diagno

[Maz]

Welcome back, Cookie!

Are you still taking 100mg BID on M-W-F?

When in remission, it’s hard to think about changing what’s working! I used to be on the same pulsed dose and it worked beautifully. I think in the same shoes, I’d just test the waters and gradually work down to just 100mg M-W-F. Tapering down would be my preference, simply because it’s easier to recoup lost groundif things start to go awry.

[Lynne G.SD]

besides taking a lot of vitamin c for the blues I found that niacinamide,not niacin,rerally helped so I took 4 capsules a day.A lot of very expensive make ups use it for age spots but you can save $$$$$ by making your own serum.Just put 4-5 capsules into 4 oz. of water and wipe on the spots as often as you can.You can do the same with vit.c but make it in small batches as C degrades in 3 days.The serums you can buy have chemicals in them to slow it down and certainly not worth the money.Keep both in dark containers as daylight degrades them also.

[Spiffy1]

Hmmmm. I thought C Reactive protein was best under one and not over three. Yours isn’t high, but it is not considered low either. Has it come down from a much higher number in the past? My C Reactive protein was never high. It is always around .5 even during my initial flare and my SED rate during my flare was 12 which it is supposed to be under 20. However, it now runs about 2. My point is….is C reactive protein a good marker of inflammation for you? For me it is useless unless it was to go really high and then it would definitely tell me something. Yeah, I don’t know. I am like Maz, I would be afraid to give up that low dose. I am sort of in your same position wondering if I could do without it. But unless I see a great reason I am going to keep with my regimen. I know I have been absolutely no help and I apologize. It is basically a gamble either way.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[TrustingGod]

I agree with Maz. I would scale back a little bit over time to see how you respond. My rheumy suggested that I come off mino after I achieved remission. Within 30 days, I had a full on flare.

[TrustingGod]

Could you speak more about niacinamide for hyperpigmentation? Did it make the hyperpigmentation go away completely? Did you take it orally and apply it topically? How long did it take for the hyperpigmentation to go away or fade? For many of us, hyperpigmentation is an issue. I’m personally interested in anything that can help make it go away.

[Lynne G.SD]

Hi TG;
I took the capsule and wiped the spots with the solution.I found taking it internally did the best.I have been on doxy for the last 4 years as well as the others and have faded out about 60%.It sure is slow going.

[bonnielou]

I would be so reluctant to stop entirely Cookie. I think Maz’s suggestion makes the most sense — cut back a little, gradually. My doctor recommended that I try taking it just 5 times/week, instead of 6, and see how that goes. That may be a good next step for you to try.

best,
Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[cookie]

Hi everyone. Thank you for your thoughts advice and concerns. I’m reluctant to stop the mino so I’ll taper off. I would hate to have a herx.

I have been taking 2 niacinamide capsules along with 1 inositol every day for over a year now but haven’t noticed much improvement regarding my skin discolouration. The whites of my eyes are discoloured and this upsets me the most.

I had X-rays done on my hands and there is considerable damage to my wrists over the course of 14 years. I thought the mino would halt the progression of the disease???

I feel so depressed right now!

Thanks guys for your kind help!

Cookie

Diagnosed with RA in 2005. Taking minocycline M W F. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, magnesium taurine, curcumin, msm, GLA, vitamin C, glutathione capsules. Using topical ointments for pain such as Voltaren. Drinking lactose free milk, eating lean meat such as chicken and fruits and veggies. Exercising 3 times a week.
My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes which is very distressing. Diagno

[akmeyer1]

I wonder if glutathione suppositories would help with skin discoloration. Glutathione is powerful antioxidant and bioavailble via IV and suppositories — very little via oral route. People take suppository for Parkinson, autism and skin lightening.

[Luck20]

I don’t understand crp numbers or sed. Even at my sickest, without meds, they weren’t very bad.

My crp stays at .5 on a <1 scale
At my sickest, w/o meds .8
And
My sed stays around 4 on a <20 scale.
At my sickest, w/o meds 8

Keep in mind, at my sickest I was deteriorating fast with quick skin hardening. I was literally afraid to sleep cause I kept waking up worse.

So I’m not sure how meaningful the numbers are.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Gee Lucke,I thought I was the only one to whom that happened.At my worst my labs were all normal except for WBC and RBC were a tad off.SED was always 2 Just can’t figure out this disease.

[Luck20]

Lol, yeah I’ve already seen a dr stare at my labs, look at me and then and tilt his head like a confused puppy! I keep hearing the word ‘inflammation’ and it sounds plenty logical but I don’t fit that according to my labs. I think my immune system got hijacked by a lesser known bacteria that our modern medicine doesn’t understand well.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Author]

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