Help!!!! Trying to figure this out

[2011Rio]

Ok…I just recently upped my dosage of mino to 100mg M,F, that was about 2wks & 3days ago. I was doing really well at 50mg M,F, so my doc and I decided I should bump up to 100mg. I did 100mg for one wk on M and F. Then the second wk added W to the protocal. So I took 100mg M,W,F. This is my 2nd wk of 100mg on M,W,F. I’ve been herxing, I THINK, this whole 2 wks. Is it possible to herx that long or to have a herx on top of a herx. I just want a break!!! I was doing so well, so I do believe it was the change in dosage. Any suggestions how to determine whats whats (herx or flare, yes, that question again). Right before I changed dosage there was marked improvement in swelling going down and it continues to be minimal in most areas. My fingers are the worst and they have been swollen for about 3wks!! Any suggestions on maybe how to get the swelling down in them?? I am really trying to figure out if all this is herxing or the disease????? Heres what I am on right now….100mg mino M,W,F…predisone @ 16mg a day (which I hv been tappering down about every 5-7 days by .8mg)…naproxen 2/day…ester c….ribes nigrum 1tsp/day….b-complex…cod liver oil….primal defense……lactoferrin 500mg/day… Any suggestions is greatly appreciated.
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Thanks Ruffian! Thats what I was kinda leaning toward, is backing off. I think I’ll try cutting out W, and doing M at 100mg and F at 50mg and see how it goes.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[DianaW13]

Hi Tricia,

I have only been on AP for 7 months now, but I do have an idea to put forward. Perhaps you are herxing this much because of a) the Minocycline dosage increase and b) simultaneously decreasing the prednisone.

I have learned (the hard way 🙂 ) that to do one thing at a time is best.

Just my thoughts, hope it settles down for you soon. Hang in there! The road gets bumpy, but it is SO worth it.

Diana

[2011Rio]

Hi Diana,
Thank you so much for the feed back. Your thoughts seem to right in line with others, so I’ll be chnging something. How are you doing…sounds like you must be getting good results, as you commented that it is well worth it? Its encouraging to hear those success stories.
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[PhilC]

Hi Tricia,
@2011Rio wrote:

Thanks Ruffian! Thats what I was kinda leaning toward, is backing off. I think I’ll try cutting out W, and doing M at 100mg and F at 50mg and see how it goes.

Here’s another idea. Consider dropping back to 50 mg MWF until you feel better, and then start out taking 100 mg only on Mondays and 50 mg on Wednesdays and Fridays. After one month (if feeling up to it), I would increase the Friday dose to 100 mg. After another month (if feeling up to it) I would switch to 100 mg MWF. That’s what I would do. In fact, that’s basically what I am doing now, except I am trying to go from 25 mg to 50 mg.

Phil

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

[2011Rio]

Hi Phil, Thanks for tthe input. That’s not a bad idea either. I will definitely keep it in mind, as I was doing pretty good right before I increased dosage. Thanks again…hope you make progress yourself.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

How about the hands, does anyone have any ideas on getting the inflamation to come down? Its been about 3 wks actually. Does soaking them help, soaking in epison salt?

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[DianaW13]

Tricia, I can’t tell you what would work specifically for your hands (although for me warm epsom salts soaks and ice helped tremendously). I also did stretches and hand excercises to keep them flexible.

But, what I did want to share is that before I started Mino, I had SOME stiffness and swelling in one hand. After I began the Mino, it got worse in that hand and then began in the other! I believe that it was the Mino working. My hands are much better now. My one pinky finger was a real sausage a few months ago. You would never know now. AP really did make me worse before I got better – just as Dr. Brown said it would. Only now that I know the “better” is coming, I can take on the worse. Well, most days anyways 🙄

Hope you have a great day,

Diana

[2011Rio]

Hi Diana,

I am glad to hear your hands are better!! Yes, all my fingers have looked like sausages except for maybe one. lol I’m gonna do the epson salt soak and ice, I was icing already but i’m gonna add the soak. I am very glad to hear that you have made progress. Thank you for your input, it all helps.

Have a great day, too!!
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

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