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Maz , you have given me great advice in the past. I am thinking of going off my Mino as it is turning my nails blue! I have been on Mino for about 8 years for my RA. I have been doing the AIP diet and have heard of a lot of people remitting there autoimmune with it. After a 30 day juice only cleanse my blood work improved dramatically and my RA factor is back in the normal range as it was sky high a year ago, also my sed rate- inflammation marker went from 25 to 2. I can really tell that the inflammation is way down in my body. Have you heard of Joe Cross, the Australian guy who did the Juice reboot? I have had a recent flare and Mino doesn’t seem to be working as well. Maybe it is a generic problem but either way. I don’t want to turn into a SMURF> Please give me some advise! Thanks
Chris
Hi Chris,
The longest I’ve heard of anyone being on mino was the original co-founder of this foundation, Pat Ganger, who has/had SD and has managed to keep it in remission for well over 30 years with AP. Very sadly, Richie, a long-time forum user and past forum volunteer, passed last August, from cancer, but he had been on mino for a good 19 or so years for scleroderma. He often said the hyperpigmentation from mino was a small price to pay for remission from his rheumatic disease. Many use Vitamin C to prevent mino hyperpigmentation, but once it’s occurred, it’s hard to reverse without a break from the antibiotic and switching to something else.
It’s great that AIP is working so well for you and is a good indicator that there is likely a gut component to your RA. No doubt there is with all rheumatic diseases, but when diet clearly works to reduce or eliminate disease in both labs and signs/symptoms, it is not only a good thing to know in terms of maintaining control, but also likely worth looking into gut healing and protective measures. Any idea which foods are your particular offenders? Gluten can be a big one and grain-based beers and other forms of alcohol can be trouble in those cases.
One thing that seems to help some folks when facing relapse is to do an antibiotic rotation (within the same abx class) to doxycycline and, because doxy isn’t always as effective as mino, to add a secondary pulsed abx, like azithromycin for an extra boost. Either that, or to look into a few rounds of IV clindamycin. First, though, if you’re working with an experienced doc, it would be good to have a good workup to check a variety of labs (CBC and CMP), RA disease markers and a hormone (including full thyroid) panel. The swollen lymph glands should also be checked (mentioned in another post). Could you have some type of infection causing this? Any chance you may had a tick bite?
Yup, a generic switcheroo can also pose big probs for some folks. It’s not always clear why this is the case, but may be due to an intolerance to certain dyes and fillers, or bioequivalence issues. There have been recent discussions about generic brands so would be good to check those out, because some generics have been sold and renamed and this has caused a lot of confusion. I’ve experienced issues with generics with replacement thyroid hormones where generic dosing would be double that of the brand I use (and pay for through the teeth). The endocrinologist was emphatic that not all generics are absorbed in the gut as well as the brand I use. I tried switching to a cheaper, gluten-free brand of levothyroxine (same dose) in the fall and sank into a massive flare due to severe hypothyroidism within a couple weeks – just wasn’t absorbing it. My integrative rheumatologist is right on board with how hormones can play havoc with rheumatic disease and it can play a pivotal role in success with AP (both hypo and hyperthyroidism can mimic RA symptoms).
The only other thoughts about your recent flare is to get labs checked for drug-induced lupus. These labs could be easily checked in a thorough work-up. Don’t worry – the chances are slim it’s that after 8 years, but it’s just smart to rule it in/out.
May I ask you gender and age? Sometimes this can provide clues. Also, check out FAQ #30: After Starting AP
Maz , I am a 55 year old Male. Just had my yearly physical and had a full lab done and all of my blood work was really good. Like I said my RA factor was way down in the normal range and my sed rate for inflammation was way down. But this bloodwork was down just after I started a 30 day Juice fast. I am thinking that I just had a flare and it is taking some time to recover. But I may check into a few rounds of IV clindamycin. Thanks for the reply.
Maz, I read that RA can affect the lymph nodes in the neck , groin and armpits. Have you heard of this? Thanks
Maz, my wife just checked my lymph nodes in my neck and said they are normal. I felt hers and mine are like hers. There but not swollen. I think its just my arthritis in my neck flaring up a bit.
Chris, I’m glad to hear your lymph nodes are back to normal. Yay! Maybe just a passing bug? If so, perhaps this has exacerbated your RA? It’s different for everyone – some passing bugs cause RA to quiten down as the immune system is distracted temporarily, but other bugs can excite inflammation.
I thought of you and your juice fast when I read this article and thought you’d find it interesting. Although some folks say eliminating offending foods doesn’t improve their RA symptoms, others notice a tremendous difference and seems like you may be one of these? When you came off your juice fast, was this when your RA flared? Can you identify which foods might be your offenders?
The Leaky Gut Conundrum and 10 Steps to Heal Leaky Gut Naturally.
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