New on AP for over a month, what to expect, update?

[magsmc]

I've now been on the AP since May 1, at first 100 mg. daily, then 6 days into it felt nauseous and dizzy, so switched to pulsing MWF 100 mg twice daily, and it is very tolerable.  Really I haven't felt too much going on…I'd say my inflammation has gone from an 8 to a 7 (on a scale of 1 to 10) possibly, but really no other noticeable effects.  I am taking the generic minocycline b/c my insurance would not cover name brand Minocin.  I've read the threads on dosing, herxing, and gerneric vs. name brand, but I guess what I'm wondering is, how do I know if anything is happening?  I'm not herxing, and not noticeably better.  Just kind of nothing.  I understand it can take months, and my disease is long-standing (15 years).  I go in July to Iowa for IV Clindy.  My rheumatologist is pressuring me to take methotrexate or embrel right away, due to erosion and damage in my neck and hands and feet.  I don't know what to do…as I want to avoid those meds but also need to be mindful of my family and young kids, and need to make sure I function as long as possible.  I'd appreciate any words of wisdom and insight about what does usually happen during the early months, how to know if I am accomplishing anything, etc.  Thanks very much. 

[Goodwife]

Hi,

I can't offer much insight, just relay my hubby's experience when starting the mino.  He started at 200 mg/day and the first 2 weeks, felt a little of the nausea, and also 'flulike' symptoms.  After about week 3, that was all gone.   By month 3, things were worse, and by the time he went into month 5-6, things toned down a bit.  Around month 6, he started the IVs and dropped the mino to MWF.  This combo seemed to really 'jumpstart' his gradual improvement, as you probably have heard from others that the IVs seem to do that.  I think that a month is too soon to notice improvements, and when they do begin, they will probably be very gradual.  Keep the faith, and pay attention to how your body reacts after the IVs in July.  My guess is that you will see more noticeable improvements after that.  Good Luck!

Goodwife

[Maz]

Hi Magsmc,

In addition to Godwife's great synopsis of what might be expected in the early months of AP and if you haven't already found these, you might also find reading the testimonials on the website helpful. A number of folk have kindly outlined their stories from beginning to remission at this link:

https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html

You might also find it helpful to watch the Personal Progress Threads at this link, as people add journal entries to their own threads. You can start your own here, too, if you'd like, as it's open to anyone. You just need to be registered and logged in to do so:

http://www.rbfbb.org/view_forum.php?id=3

Peace, Maz

[magsmc]

Thank you both.  My main dilemma is not knowing what to do about taking the other meds. by dr. thinks I desperately need.  My neck is the big concern…I am told there is erosion and instability could lead to life threatening problems.  So, although I have faith in the AP, I don't konw if I have time for it to work, or if I need to be open to methrotrexate or prednisone in order to hold off the inflammation until it kicks in.  Also, I guess I just wish I knew if something is happening.  I know it will take time.  I appreciate the support.

[lynnie_sydney]

My understanding is that Dr Brown (and others after him) advocated taking control of the inflammation to allow the abx to work and used tapering doses of pred to do that. Lynnie

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)

[Goodwife]

mags,

there are other things you may be able to use for inflammation.  My hubby went to a naturopath and along with some dietary changes, started Ultrainflammx, by Metagenics, a powder you mix w/water or juice and drink once daily.  It is rice based, and is loaded w/vitamins, minerals, etc.  He did this for about 6 months or so and this may have contributed to greatly reducing his inflammation.  It is worth looking into if you do not want to go the “drug” route.  A naturopath doc would be a good place for info and  guidance.  Good Luck!

 

Goodwife

[lynnie_sydney]

magsmc

I am told there is erosion and instability could lead to life threatening problems

This is what alerted me to the fact that you really need a doc's advice on this. However, I also notice that you are due to go to Iowa in July. If you can  wait until then before adding anything else into your mix, this may be a good way to go. Others will tell you they received excellent care, advice and treatment from this exceptionally well regarded AP doc.  Lynnie 

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)

[magsmc]

Thank you.  I am thinking I will try to wait until I see Dr. S. next month.  If I really have to, I will visit the dr. here and possibly take a very low dose of pred. just to get by…by I'd rather not.  I'm trying to keep my spirits up, I appreciate the support!

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