Am I Missing a Step?

[Dawn]

Well, since November 2012 I have pretty much stopped the predisone, down to just Mobic and MWF 100 mg. Mino, however, I seem to physically ramp-up to either a Herx or re-inflamation about every 1 1/2 weeks. That’s when out of desperation I wind up doing a short cycle of prednisone (3 days), which helps almost immediately to bring it under control. Then the clock seems to start again toward the next Herx or ? it is. Rats – I tried adding an additional dosage of Mino on my M regimen in the evening time. Additionally, ALL my Mino dosages are on an empty stomache and remain such for 2-3 hours afterwards as well. My Mobic prescription just ran out so I substituted liquid Advil twice a day to (hopefully) cover for that. With no medical insurance, and only Mino and dwindling supply of prednisone – I am racking my brains trying to figure if I have missed an obvious step somewhere or just not picking up on a more obvious change I should be considering.

I welcome any and all thoughts/questions to help me track this down. Last year was a fiscal & physical Tsunami for our household – but a change of jobs for myself is starting to relieve those stresses that were daily last year. Now it’s just the physical stress of trying to get my body to allow a routine of sorts so I can remain at work in support of my household. It is mostly sedentary work with regular interruptions to walk back and feed the horses (sometimes quite a challenge between stiff/sore ankles-kness, and hands) or out to the mailbox; or occassionally my employment requires me to do walkthroughs at properties. I welcome the exercise but get fearful that without getting a more predictable/controllable pattern to my swelling and stiffness I could be in serious trouble in the coming months…and most especially at winter’s start again.

Okay, ‘nough from me – any thoughts/ideas/queries to help me track my self-doctoring?

DawnF

[PhilC]

Hi Dawn,

Don’t forget the importance of diet. I highly recommend that you consider doing as I did and eliminate all dairy products and nightshade vegetables from your diet. For more information, read this message that I posted back in December of 2011:
https://www.roadback.org/forum/viewtopic.php?p=58076#p58076

Phil

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

[Maz]

@Dawn wrote:

Well, since November 2012 I have pretty much stopped the predisone, down to just Mobic and MWF 100 mg. Mino, however, I seem to physically ramp-up to either a Herx or re-inflamation about every 1 1/2 weeks. That’s when out of desperation I wind up doing a short cycle of prednisone (3 days), which helps almost immediately to bring it under control. Then the clock seems to start again toward the next Herx or ? it is. Rats – I tried adding an additional dosage of Mino on my M regimen in the evening time.

… I am racking my brains trying to figure if I have missed an obvious step somewhere or just not picking up on a more obvious change I should be considering.

Okay, ‘nough from me – any thoughts/ideas/queries to help me track my self-doctoring?

Hi Dawn,

This is just speculation on my part, but it sounds like this repeat cycle may have something to do with prednisone rebound ❓ Minocycline in the doses you are taking it is not immune-suppressive, so there will be continued flaring until remission is reached in a three-step fwd, two-step back dance all the way to remisison…and you are only 4 months into AP, so still very early days. However, as time goes on, these flares should become less frequent, less intense and shorter in duration. Just crossed my mind that taking pred each time there is a rebound from the previous several days of taking it, could be creating this cyclic effect.

Your situation is a challenging one, for sure, with your need to function at work for the family, though I can’t help but wonder if stopping/starting pred every 10 days may put you into a vicious cycle of sorts. Phil has a good point – an anti-inflammatory diet can be very helpful. There are also other ways to help the body to detoxify and, thus reduce inflammation. What have you tried in this way so far?

Another thought that came to mind is that you may not be on the proper therapeutic minocycline dose for you. While 100mg MWF works great for some, others do better on daily dosing. Have you had any recent labs (CBC, Metabolic panel, LFTs, RF, anti-CCP, SED, CRP) drawn lately to compare to earlier labs? This can be so helpful in determining how well one is responding to therapy. Without insurance, this can be pretty expensive to do, but if they can be run even every 6 months, then this can at least let you know whether or not your dose is helping or if you might need to change things up and tweak your protocol. The thing is, if your protocol isn’t ideal for you, you could be heading backwards instead of fwds and find yourself unable to work, which would be totally counter-productive in every respect.

It might help to get the insights of Dr. S. in Iowa. Would you like his contact info to ask for his advice on your protocol? He is very kind to answer AP patient questions freely. 🙂

[Dawn]

PhilC, I very much appreciate the input and the link to prior comments. I will look much more closely at my diet as that is my husband’s take as well.

Maz, I would love to obtain Dr.S’s contact information, please do provide (via PM?) – your insights are very useful, and I was wondering a similar thing with the prednisone cycle actually being a trigger.

Combined, I’m thinking until I can get feedback from Dr.S and afford a blood test for the CCP, CRP and RF, in addition to some of the other basics: I will try to further tweak my diet to exclude ALL nightshades, and completely eliminate dairy which has only been on a trace basis of late (6+ months) anyway. That, plus trying very much to detox through apple-cider vinegar, FIR sauna, and just plain water-only days. I wonder at the presense of sugar in things I still allow as well? Not that it is in huge amounts – but maybe the smallest amounts are proving toxic and “food” for any bug(s)?

DawnF

[lynnie_sydney]

…..always remembering, too, that bloodwork can initially worsen also in the first 6 months – can be part of the herx response. Mine did and my RF went up by 100 points (yikes) before plunging downwards by 350 points at around the 6 month mark.

My thoughts were also that the cycling of pred so frequently is most probably a major player in all this. Sounds like a good plan to consult with Dr S.

Be 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)

[Maz]

@Dawn wrote:

Maz, I would love to obtain Dr.S’s contact information, please do provide (via PM?) – your insights are very useful, and I was wondering a similar thing with the prednisone cycle actually being a trigger.

Dawn, I’ll send you a PM with Dr. S’s contact info and hope he can help to figure out a way forward with you. Just click up top where it will say (1 new message) to retrieve your PM. 🙂

[Dawn]

Lynnie, thank you too! I already feel better seeing in print some of the thoughts I’ve had bouncing around in my head but I hadn’t tacked them down as valid enough to act on! Looking forward to Dr.S’s input.

DawnF

[Trudi]

@Dawn wrote:

detox through apple-cider vinegar, FIR sauna

Hi Dawn–
My own experience with apple cider vinegar (or any type of vinegar) was a LOT of pain. When I was muscle tested for it awhile back, it was a big NO-NO. I am hoping that as time goes on I can slowly introduce it because I do think it is beneficial. Even when I sneak in a couple of oz. of wine, I feel it, especially in my knees. FIR sauna had my blood pressure go up. All frustrating!!

Hoping you quickly resolve your issues–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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