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Hello All, I have a question, my daughter has seronegative RA and she is on AP therapy since Jan 10th of 2018. She was better but since last weeks she is having more swelling so my question is can she have Herx this late in therapy ? She is almost into 6th month. She is Minocycline M/W/F. Appreciate all the input.
Hi Peachy – Yes, I think it’s quite possible to Herx at six months. Two steps forward and one step back is often common with AP therapy. I herxed off and on for about a year, although I continued to progress slowly towards remission. However, it could be some change in diet or meds that is causing the Herx too. If it lasts more than a couple of weeks without some relief you may want to explore other possibilities, but if she’s having good days and bad days that seems perfectly normal for first year of treatment and sometimes beyond that depending on how long she had RA before she started AP.
Cindy
Thank you so much for your response. Are you in Remission? How long it took you to get to this point ?
Hi Peachy,
I only had RA for 1 year or so before I started AP. It took 6 months of awful herxing before I turned a corner and finally knew I was making strides. It was a slow but steady road to recovery from then on. My RF came down every 3 months when tested and now that is in normal range my anti CCP, which is another test that is even more sensitive to RA has been coming down by leaps and bounds and is almost in normal range.
After a good 2 years, I was deemed “in remission.” BUT I felt good enough to enjoy life again…felt like “my old self” at around 1 year on AP.
Hold on…it will come. 🙂
Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pmThank you so much for all the support. You guys are awesome. It is hard road but I am hopeful for wonderful future she has ahead of her!
Hi Peachy – I’m not in remission right now, but I was from 2009 to 2014. I had trouble getting brand Minocin in 2014 and the generics weren’t working for me. Once I got brand Minocin back I went back into remission but I ran out of it in April so I’ve been experimenting with other generics. It’s hard to get a pharmacy to give you the same generic consistently but I’m hoping I’ve found the solution and will be back to remission in the next month. Thank you for asking.
Good luck to you and your daughter. It is wonderful to have this support group.
Cindy
Hi Peachy,
Aside from Airen’s great suggestions, it is worth noting (if your daughter isn’t using any form of immune-suppression) that flares can and do occur all the way to remission. When someone is pulse-dosing (intended to target the slow-growing/slow-replicating mycoplasma that doesn’t require daily dosing), there is very little immune-modulation from the minocycline and it is done as a wee dose in order to prevent disabling too many bugs at once which raises the risk of creating rheumatic hypersensitivity. What should happen, over time, is that flares will become less frequent, less severe, and shorter in duration.
Click on FAQ #25 and #26 to read about this.
If you have the book, just take a moment to re-read the Chapter on “Tailoring the Therapy,” and Carol Lange’s story. There are some important nuances in this chapter that provide insight on how Brown managed flares.
A few questions:
Does your daughter do IV clindamycin?
Has she done anything to clean up her diet, trying to eliminate inflammatory foods?
Does she do anything to help her body to detox?Hope this helps!
Hi Maz, She is cutting down Gluten , dairy and sugar from her diet. She is also taking 4 mg prednisone. Originally her Rehumotologist had her on 15 mg and now she is down to 4 mg within last 6 months. No IV. Only M/w/F mono. She is seeing Dr F in riverside. He said she is not allergic to Gluten after her blood work but she is still cutting down Gluten. No detox so far.
Hi,
She is also taking 4 mg prednisone. Originally her Rehumotologist had her on 15 mg and now she is down to 4 mg within last 6 months.
If she reduced her dose of prednisone too quickly, that could be responsible for the worsening symptoms.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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