HELP! What are we missing??

[kcdrake]

So I’m writing on my mom’s behalf. She has been on AP for almost 18 months now. She’s taking minocine, fluconazole and a bunch of other supplements to lower inflammation and support her system. We know this is not a quick fix but after 18 months we finally had a bunch of blood work done and her inflammation levels were around 650 which is where they were when she had her first initial mother flare! Mind you she is also on 15mg prednisone a day and a bunch of ibuprofen just to get through the day. She receives IV’s once a month.

She is remaining strong throughout the pain and inflammation but we are lost, frustrated and looking for any answers.

what are we missing?

[kcdrake]

oh and her doctor is fairly open minded but has her on hormones and is increasing her hormone dosage. She’s been on them for months with no positive reactions…. is this normal protocol?

[m.]

Hi kc,

Could you fill in some details? What’s the diagnosis? Long standing disease or recent?

How much Mino is your mom taking and how often?

Is she seeing an experienced AP doctor?

[kcdrake]

She was diagnosed last fall with Rheumatoid Arthritis… She is 54 with absolutely no history of RA in the family and no precursors to the diagnosis… She did have a Major oral surgery a few months before and received no antibiotics, she also has peridontal disease so we thought that might be a correlation. Anyways after about a month of mysterious aches and pain she woke up one morning and literally could NOT get out of bed. My dad had to carry her to the bathroom… it’s been a long road since….

She’s on 200mg minocine MWF

[Maz]

@kcdrake wrote:

We know this is not a quick fix but after 18 months we finally had a bunch of blood work done and her inflammation levels were around 650 which is where they were when she had her first initial mother flare! Mind you she is also on 15mg prednisone a day and a bunch of ibuprofen just to get through the day. She receives IV’s once a month.

Kc, when you say her inflammation level is 650, which lab marker do you mean? Do you have a copy of recent labs your Mom wouldn’t mind sharing with us here?

One prob might be that she’s on both pred and lots of ibuprophen….both of these drugs used together are not a very good idea due to risk of combined side-effects and they are listed as having moderate, clinically significant interactions (ibuprophen causes blood thinning and cortisone cause poor wound healing so not good for gut). It would be better if she could talk to her doc about using something like plaquenil, which is both anti-inflammatory and anti-microbial in actions.

http://www.drugs.com/interactions-check.php?drug_list=1936-0,1310-2584

Just based on what you said – and this is just speculation – your Mom may do well to work on some gut healing measures, as the drugs she’s taking could be creating more in the way of “leaky gut” and gut dysbiosis (imbalance in gut bacteria), then this would exacerbate her symptoms (food intolerances and bugs from gut being picked up by the immune system as foreign and creating more of an inflammatory response). Is she doing anything to help her gut? is she also taking a good quality probiotic?

Another thought is that you said she was doing IVs – do you mean IV clindamycin every month? It could just be that she’s going at things a bit too aggressively with the amount of inflammation she’s dealing with and it’s created a hypersensitivity situation. Has she tried doing a wash-out for a few days to a week to see if her symptoms feel a bit better?

[kcdrake]

Maz,
Thank you for your feedback! Whatever they used to read inflammation last time is what they used this time… is it c reactive something? She asked for copies of her labs but didn’t end up getting them… : (

I think mom is ready to go for whatever is going to bring her some relief and ultimately healing. You mentioned plaquenil… I really don’t know anything about it but do know that 15 mg prednisone and a ton of ibuprofen is NOT good. I would appreciate any medicines that might equal or be greater in the relief department.

She is taking a good probiotic, is on an all organic, gluten free, dairy free diet. She does have chicken and fish. I would actually like her to have some kefir or yogurt but she is trying to follow the diet perfectly… what would you suggest as far as a probiotic?

We were under the assumption we need to be VERY aggressive to kill off these bugs and get mom feeling better. Are you suggesting perhaps we are being too aggressive? She owns and runs a preschool so immunity and mobility are top priorities. We have tried to convince her to sell it but she wants to beat this RA and keep going….

We are open to ANYTHING and appreciate all advice….. What do you suggest Maz?

Thank you in advance for your time and compassion….

[kcdrake]

just to return to the last conversation… she’s terrified to get off of prednisone and return to a complete immobile state…. how do we do a washout successfully and carefully?

[PhilC]

@kcdrake wrote:

what are we missing?

Is your mother still eating potatoes and tomatoes, or other nightshade vegetables?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

@kcdrake wrote:

Maz,
Thank you for your feedback! Whatever they used to read inflammation last time is what they used this time… is it c reactive something? She asked for copies of her labs but didn’t end up getting them… : (

I think mom is ready to go for whatever is going to bring her some relief and ultimately healing. You mentioned plaquenil… I really don’t know anything about it but do know that 15 mg prednisone and a ton of ibuprofen is NOT good. I would appreciate any medicines that might equal or be greater in the relief department.

She is taking a good probiotic, is on an all organic, gluten free, dairy free diet. She does have chicken and fish. I would actually like her to have some kefir or yogurt but she is trying to follow the diet perfectly… what would you suggest as far as a probiotic?

We were under the assumption we need to be VERY aggressive to kill off these bugs and get mom feeling better. Are you suggesting perhaps we are being too aggressive? She owns and runs a preschool so immunity and mobility are top priorities. We have tried to convince her to sell it but she wants to beat this RA and keep going….

We are open to ANYTHING and appreciate all advice….. What do you suggest Maz?

Hi Kc,

Like Phil, I’m thinking there is something going on with her gut. Also wondering if the 650 figure is her RF (rheumatoid factor) rather than CRP, because if it was the latter, I’m not sure she’d be able to function at all.

m. asked above if your Mom is seeing an experienced AP doc…I’m wondering that, too, and if he/she might be integrative in approach and willing to run some checks on her gut function. Might not be a bad idea to also run some labs to check for drug-induced lupus…it’s rare, but can happen in this sort of timeframe, if one is predisposed.

Your Mom’s dosing isn’t extraordinarily high, but if she’s got leaky gut issues, then building hypersensitivity (and food intolerances, as Phil suggested) can become a problem, even if eating a good clean diet. I’ll PM you the Brown Hypersensitivity transcript of a talk he gave and when you read it thru with your Mom you may be able to recognize some of her symptoms and, if it seems relevant in this context, Brown provides his recommendations for doing a wash-out.

Probiotics are a really individual issue around here…what works for one may not work for another due to various sensitivities to various fillers and how a particular probiotic may work on modulating the immune system. So, it can be a bit of trial and error. If she’s already on a good broad spectrum (lots of different strains) probiotic and happy with it, then trialing a rotation with another one can sometimes be a good thing to do. I use a couple different ones in rotation, including PB8, VSL#3 and Theralac. You mentioned that she is on Diflucan, so am inferring that she may have yeast issues. If so, then it’s also probable that leaky gut is an issue. Working on gut healing could be very important in this scenario. I have found bovine colostrum to be amazing (in terms of gut healing, inflammation and immune system modulation), although others may be able to chime in and share other methods they have found helpful with this, too.

I think it might not be a bad idea to jot an email off to Dr. S. to ask for his insights on what he would do in this situation in terms of your Mom’s AP and her other drugs, too, Kc. I can understand your Mom wanting to continue the good fight, but at 18 months she should have seen some signs of improvement in labs/symptoms. Also, it can become self-defeating if using masking drugs that bear significant long-term use risks that are essentially counteracting the purpose of the mino and creating other health issues for her down the line. It would be better for her to consider a DMARD or biologic than to depend on long-term, higher doses of pred and NSAIDs. Mino actually doesn’t work so well as an antimicrobial agent when the immune system is suppressed, because it’s a bacteriostatic…meaning a functioning immune system is needed to kill the cell-wall deficient bugs mino is designed to target as this class of abx don’t kill bugs outright and just disable them (unlike bacteriocidals, like penicillin, that kill cell-walled bugs outright). In other words, right now it sounds like she’s just spinning her wheels, so to speak.

http://en.wikipedia.org/wiki/Bacteriostatic_agent

[kcdrake]

Thank you again for your insights! I read the washout article and contacted Dr. S…. so basically as far as the washout goes she needs to STOP taking everything for a few days and then slowly introduce her medicines back in? She is on fluconazole basically as a preventative to yeast, she’s never had a problem but her doctor wants to keep her on it. I spoke with her today and got her RF numbers. When she was diagnosed her RF was 480 and now its 600. Here is her list of medications, supplements ect ect

200mg minocine M/W/F
100mg Fluconazole T/TH/Sat
2000mg circumin
Fill oil
Vit D
hormones (melt under the lip)
orthobiotic (probiotic)
MSM
15mg prednisone
1000mg ibuprofen a day throughout the day
1/2 grain naturethroid

IV cleo 1200mg once a month.

Thank you for your help

[Maz]

@kcdrake wrote:

Thank you again for your insights! I read the washout article and contacted Dr. S….

KC, I have a feeling Dr. S. might be taking a snow-cation, right now. He’s semi-retired and I seem to recall he goes away for a few weeks during the cold Iowa months. It might take a while to get a response, in other words. Just a heads up on that. 😉

so basically as far as the washout goes she needs to STOP taking everything for a few days and then slowly introduce her medicines back in?

Yes, this is what Dr. Brown would do in cases where a patient might be experiencing hypersensitivity (as described in the transcript). It is possible, however, that the reverse it true and that your Mom’s dose is not high enough or that a second oral antibiotic, like azithromycin, might be helpful. This can also be the case (when immunosuppressive therapy is being used), but a useful first-step self-test to check for hypersensitivity is to do a short washout of a few days to a week to see if symptoms improve.

Can you find out what generic minocycline your Mom is using? Folks have been reporting that some generics are less effective than others, so this may figure into the equation, too.

She is on fluconazole basically as a preventative to yeast, she’s never had a problem but her doctor wants to keep her on it.

Different generics of fluconazole can also produce probs for some folks, so this is also worth checking, if she’s only been using one generic or the pharmacy has switched generics on her. These are just ideas to consider, of course.

I spoke with her today and got her RF numbers. When she was diagnosed her RF was 480 and now its 600. Here is her list of medications, supplements ect ect

Must admit, it’s a relief to know that it’s her RF and not her CRP! Yes, it’s quite high and odd that it has gone up since last tested, but this can happen with flares.

200mg minocine M/W/F
100mg Fluconazole T/TH/Sat
2000mg circumin
Fill oil (Do you mean Krill oil?)
Vit D
hormones (melt under the lip)
orthobiotic (probiotic)
MSM
15mg prednisone
1000mg ibuprofen a day throughout the day
1/2 grain naturethroid
IV cleo 1200mg once a month.

Looks like your Mom is seeing an integrative doctor for her treatments? 1000mg ibuprophen is basically 5 x 200mg Advil per day. That’s “within limits” as a standalone dose (with food), if tolerated and no contraindications, but not okay in combo with 15mg pred (or other blood thinners) and could be part of the problem. If not a problem now, it could well prove to be a problem down the road, so the ideal would be to get the pred dose down very slowly (not suddenly, because stopping it suddenly can cause serious adrenal crisis). Also, MSM is blood thinning and higher doses in combo with ibuprofen, which is also blood-thinning (mino, curcumin and krill oil all have some blood-thinning props), could pose a significant issue (e.g. stomach ulcers can be silent), especially while on prednisone.

As we’re just patients here, we can’t offer any sort of medical advice, KC, but here is what I’d consider doing in the same situation:

1. Reduce stress in every way possible to focus on health. Neglecting health in the short-term and using pred and NSAIDs to mask symptoms can lead to longterm probs down the road. It’s counterproductive to the therapy to expect it to be working on lowering pathogen load when a functioning immune system is needed to clear away disabled bugs. That is, a low, pulsed dose may be doing little for the RA, because the whole idea of low pulsed dosing is to re-train the immune system to recognize bugs in a slow fashion and to become less reactive to them. If the immune system is dampened down by higher doses of prednisone, this won’t be happening very effectively and the low dose will not be doing much in the way of modulating immune function. Other infections can proliferate that aren’t susceptible to mino or clindamycin when immune system is suppressed. When folks new to AP are already on immunosuppressant therapy, experienced docs tend to supply higher daily dosing so that at least more immune-modulating effects are expected. This way, it provides a bit more coverage for when the person feels ready to slowly taper off the other drugs. I know this must sound very confusing, so ideally it’s best to wait for the insight of Dr. S. 😉

2. In the meantime, one thing any APer can do for themselves is a washout of the abx for a week (but to use this time to focus on checking generic efficacy, detoxing, hidden dietary offenders and stress reduction). Hopefully, this can provide important clues as to what is going on when things aren’t going to plan. If no change, then it’s possible the dose is not high enough or the generics being used aren’t effective enough. If feeling better, then it’s possible that hypersensitivity is being experienced and also possible that the generics are creating sensitivities (capsule composition/fillers/dyes).

3. Once a washout is done, I’d be looking for guidance from an experienced AP doc on how to proceed with dosing and possibly adding a second oral abx (added in later if mino dose recommendation is to be higher). Sometimes there are other infections involved that just aren’t responding to the antimicrobials being used. RF can elevate with acute infections, for months, post-infection, as an immunoglobulin response (e.g after a myco pneumoniae infection), when treatment is ineffective (dosing, generics, class of abx being used, others?). To really get a complete picture, though, it would be helpful to keep records of past and recent labs and to stay on top of taking note of any other significant anomalies (e.g. elevations in liver enzymes or blood cell counts…anemia?).

4. I’d be working on healing my gut from the NSAID and pred use on a long-term, ongoing basis – in addition to eliminating any noted dietary offenders – with supplements that can support the healing of leaky gut.

Hope others will chime in with ideas for your Mom, KC. As mentioned, this is just all the stuff that comes to my mind from my personal experience, but I could be missing something that another person may notice.

[kcdrake]

Thank you so Maz,

You have given us alot to think about and some changes to make… I will wait for Dr. S’s response and in the meantime do a lot more research on the things you mentioned…

Thank you for your ideas and enjoy the weekend!!!

[kcdrake]

And one more question, while she slowly weans of prednison is there a better NSAID than ibuprofen that she should take?

[m.]

Some people travel to see an experienced AP doctor, and find it’s well worth it.

[PhilC]

Hi,
@kcdrake wrote:

And one more question, while she slowly weans of prednison is there a better NSAID than ibuprofen that she should take?

Nabumetone (Relafen) is probably the best NSAID to use if one is trying to reduce one’s risk of developing leaky gut syndrome, or making an existing case worse. She would need to discuss this with her doctor, since nabumetone is only available by prescription.

For more info, please see this message: Re: NSAIDs.

As for weaning off of prednisone, that should be done under a physician’s supervision. Her doctor will probably not want her to start the weaning process until after a replacement medication (e.g., a DMARD) has been successfully added to her treatment regimen.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Author]

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