Flare help?

[Roberta]

I had been doing so great on the Brand Minocin(5 years) and then couldn’t get it, generics didn’t work and then after a couple months of searching high and low, I finally got Minocin MR (pelleted) from the UK which I have been using now for roughly 12 weeks. Because things were so bad flare wise during not having the brand Minocin, I took a 6 day course of 20mg Prednesone which worked well. I was back to my old self, or so I thought. Now, another flare again!!! It’s been about 3 days now and I wake up very stiff and hands and knees are painful. I’ve had to take 400mg of Motrin 1-3 times a day. I know Motrin is not good but I know being in pain is also not good! Any thoughts or comments about what is going on?? Does this mean the Minocin MR is no longer working for me?? Should I ask my doctor to put me back on Azithromycin in addition ?? (I was taking both for about a year or so before I stopped because I felt like they started bothering my stomach.) One additional. item to mention…about 3 weeks ago I found out I had a 3rd metatarsal stress fracture which now has me unable to so my daily walks and I’m in a walking shoe that is throwing off my gait. I mention this because that could be part of the knee pain? I value your input and suggestions!!! Thank you so much!

[Maz]

Hi Roberta,

Would you kindly share what dose of mino you used to take and what you’re taking with Minocin MR? Has anything else changed in your protocol? Have you had to deal with any bugs this past winter? Tick bites? Have you had a thyroid lab workup?

After 5 years some folks will rotate their antibiotics for 6 months or so (click here to read FAQ #30)

[Roberta]

Hi Maz,
Yes, certainly. I started with 100mg of Brand Minocin back in 2014. I was on M-W-F 2x a day. After a couple years I was told to add the Azithromycin 500mg – T-T-S and stay on it for about a year I think. I weaned off that and down to only 1 Minocin on M-W-F and that worked for a good long while, at least a couple of years.

I am currently on Minocin MR 100mg M-W-F 2x a day. I see Dr. F. who does extensive lab work and he has tested me for Lyme in the past and I was negative. My thyroid is good (I do take Armour 75mg a day). I also have positives for Epstein Barr, Herpes 6, Cytomegalovirus, High ANA (speckled A), High ASO, and Mycoplasma pneu 21.I have been very fortunate, no bugs or colds at all.

Thank you for your help with this!!

Roberta

[Maz]

My fellow patient thoughts are that the Minocin MR could be setting off a new round of herxing, added to which there could be prednisone rebound.

If I was in the same position, I’d talk to my doc and ask if I could do a week washout, then restart Minocin MR at a lower dose (100mg M-W-F). If that worked better and pain levels decreased, I’d add back pulsed zith (due to high ASO and as it helped before). I might also ask to add in hydroxychloroquine till things settled down again for some inflammation relief and for its antiviral effects.

It sounds like you tried some generic duds for a while before starting on Minocin MR which could well be working but just working too well and eliciting new herxing? Also, Brown used oral pred to calm down excessive herxing, but usually not in such high doses – the book describes 5-10mg max. Tapering needs to be done very carefully and just stopping 20mg after being on it, even for a short period, may be part of the prob? Rheumatics tend to be pretty sensitive to any quick changes.

Note: hopefully armor is keeping your Free T3 and Free T4 levels optimal (not just in range). Being hypo or hyper can mimic RA pain. Some docs use natural thyroid hormones and only check TSH which can mean false readings if med is taken on morning prior to blood drawn due to the high T3 content.

Are you on a good probiotic? Any changes to supps? Do you recall which Lyme test was run? This year is expected to be especially bad with ticks due to the very mild winter and it’s worth rechecking at intervals with specialty lab testing if there is any risk of exposure (walks in tall grass, wooded areas, gardening, etc). A new infection of any type can set RA off again.

[Roberta]

Hi Maz,

There is so much that you have pointed out here that I had not considered!!I never thought I would Herx again since I had already been on this medication before but I guess the lapse in taking it could be why?

I had no idea about the possibility of a ‘rebound’ effect with the prednisone? The pack I took was 20mg but only for 6 days and it decreased the dose each day…Day 1 you took 6 pills, then 5, 4, 3, 2, 1 and then you were done.

One thing I forgot to mention, my cardiologist started me on 20mg Crestor on February 14 (right after I finished the prednisone). I resisted for years but I have APOE3/4 and have a 50% blockage in my LAD. So I’m not sure if this could be part of my problem? She had done a swab test on me to see if I could take statins and supposedly I could.

My last thyroid panel did the T3 and T4 as well as Free 3 and 4 and they were good. The lyme test was done twice and it was by whoever Dr. Franco used (I don’t remember). It was awhile ago for sure.

I take Flora Max, 100 Billion but only on antibiotic days. I take Ubiquinol 100mg, Joint Support, low dose aspirin, the armour thyroid, magnesium, liver support, Vitamin D3/K2, and Mason’s immune and gut support (mushrooms) powder daily.

I very much appreciate this input!! It’s 5:45am and I write this after waking up with whole body stiffness and concentrated pain in my hands and knees…ugh. I’ll be so grateful to get back to my painfree self!!!

Gratefully, Roberta

[Maz]

Hi Roberta,

With cardio-vascular issues, hydroxychloroquine may not be wise for you, but I’m not a medical professional. With statins, there is a risk of muscles being affected but it sounds like your doc is monitoring this for you.

Oh I see now – you were on a pred taper pack. That should be safe enough. It can be a bit of a “devil drug” though, giving immediate relief from RA and lulling one into thinking you’re in the clear. Sometimes it can knock back the inflammation but sometimes the rebound from pred can make the pain feel so much worse as it’s effects wear off. People who take 5-10mg for longer periods have a tricky time tapering off it, as the adrenals make about 5mg of cortisone a day and they stop producing it when it’s given exogenously in the shape of prednisone. Tapering slowly and carefully is needed in those instances to help the atrophied adrenals to gradually wake up again.

Yes, herxing is a possibility after taking a break from AP, as can changes in dose or switching to a more effective brand or adding an additional antibiotic. Each person is unique and lots depends on pathogen load and pathogen susceptibility. One way that experienced docs view treatment effectiveness is to see a good herx, because it means the antibiotic is hitting its target.

Have you tried any methods for detoxing? An elimination diet? Stress reduction methods? Has Dr. F. suggested a round of IV clindamycin for you? Just throwing out some ideas to ponder.

Feel better soon, Roberta!

[Roberta]

Hi Man,

A quick update…It turns out after staying off my left foot for 7 weeks that it was not a stress fracture but RA causing the pain. The foot doctor described something called ‘pencil in a cup’ that she saw on the X-ray (she didn’t see it at first). So I was a little disappointed that she didn’t mention anything related to the RA. Anyway, the flare continues.

I had bloodwork again and chatted with Dr F last week. The numbers are what he described as slightly elevated and says he thinks it’s a combination herx and rebound from the Prednisone pak I took in early February. He also says the inflammation is the cause of the pain. He said to stay on the Minocin MR. He has now added Azithromycin 250mg, T-T-S and also prescribed Mobic 7.5mg morning and evening. This helps a little but so far has not eliminated pain :(. I’m so frustrated. Do you know anything about the Mobic? Does it take a while to work?

I’ve tried to start back with a little walking (which does not feel normal) and some bike riding just to get some exercise. I’m also so torn as to which diet to follow since I feel like I eat healthily already. So many of them contradict each other…Mediterranean, Plant paradox, Medical Medium, Paleo…ugh.

Anyway, just reaching out in my frustration…thank you!!

Roberta

[Maz]

The usual suspects are herxing and rebounding around here when starting or restarting AP (or switching/adding antibiotics) and tapering off pred.

Have you tried topical pain relief gel, like diclofenac?

[Roberta]

No I haven’t heard of that. Is it over the counter? I use some essential oils but the relief in minimal.

[Maz]

My rheumy prescribed it so I just had the co-pay. Orthopedists sometimes have free samples in their office. Have to be careful not to use more than prescribed (nor combine it with oral anti-inflammatories, like Mobic or ibuprophen). I find it’s been helpful as an adjunct to have on hand as it’s quickly absorbed topically to help with joint pain. Not a miracle cure, but saves swallowing a ton of ibuprofen. Volteran gel is similar. Best to check with rheumy and ask if it would be okay to try.

[Linda L]

Diclofenac is Voltaren or ratler Voltaren is diclofenac.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Linda L]

I meant …. rather

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Maz]

Yup, you’re right, Linda. Voltaren is a brand name for diclofenac.

[Roberta]

Thanks Maz and Linda. I’m going to ask about using Voltaren gel as necessary. I’ll let you know how I fare down the road.

[Author]

Posts