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I was diagnosed with RA in March of this year, but have been having problems/symptoms since '06. I had a high anti-ccp result and was told by my doctors I have a severe form of the disease and will wind up severely disabled in short order unless I start on a serious drug protocol right away. I was put on Methotrexate, Plaquenil, Prednisone and an NSAID. After two months my Rheumatologist wanted to add Arava. It was in researching that drug that I came across the RBF and AP therapy. I declined to go on the Arava and asked for a Rx for Minocin. She agreed but said it wouldn't work well. I didn't care and was excited to start. I began the Minocin 200mg MWF along with my other meds with the exception of the prednisone which I slowly weaned myself off of.
After being on the AP for only two week I had a particularly achy flare. That flare (herx?) was followed by FIVE days of bliss. I had energy, no brain fog and no pain. :roll-laugh: Feeling like “my old self” again, I over exerted and wound up very fatigued and exhausted, and a touch achy. I didn't know if I was herxing or anemic from my MTX, so I went General Practitioner to have labs run to be sure my blood levels were ok. One of the labs my GP ran (to be thorough) was a blood culture to be sure I didn't have a blood infection. Long story short -I was hospitalized for 36 hours because one of the cultures showed a staph infection. Interestingly, I felt fine the whole time- no fever- normal blood counts, etc.- I asked if it was a false reading.:? They kept me for observation and ran more cultures and came to the conclusion that the first sample was indeed contaminated and I did not have an infection!!! However, while in the hospital I had discontinued my MTX due to fear of suppressing my immune system if I was indeed infected.
After coming home, I was amazed that although I was exhausted, anxious and irritated with all the hospital drama, I wasn't flaring badly…I think the AP is helping! Then my daughter got sick and was put on antibiotics. I skipped my MTX again this week to protect myself from giving the bug an opportunity to get me sick. I was still feeling ok. Then last night and today…BAM , I AM FLARING EVERYWHERE! I hurt in my elbows, wrists, feet, shoulders, knuckles and more…I can barely walk. :crying: I am “foggy” and have no appetite. I feel worse than I have in a month.
For all you APers with some experience, Is this a herx or a bad flare because I have gone off the Methotrexate? I know you can't diagnose me, I just am asking for your opinion based on your experiences. I am scared. I don't want to go back on the MTX, but don't want to flare like this everyday and sustain irreversible damage. I have been reading Scammell's book over and over. This sounds like a herx, but it also coincides with stopping the MTX!?!?
Sorry this is long, any advice, wisdom, experience you could share would be greatly appreciated.
Peace,
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Hi Amy,
Just my layman's opinion, but it sounds like the cumulative effect of a number of things – rebound effect of coming off methotrexate, prolonged period of stress and herxing.
Some AP docs tend to put patients on mino 100mg twice a day initially when they are also taking other DMARDs and want to eventually wean off the others. This may be due to the anti-inflammatory properties of minocycline in order to avoid a rebound flare as weaning off the other drugs begins. You're on a pulsed dose, so this may be exacerbating your herx/flare response in relation to the stress and coming off the mtx all at once.
As I understand it, stress, in and of itself, increases the body's natural cortisone, which has a temporary immuno-suppressive effect. Then, when we begin to take a breather again that short-burst effect is lost and a flare ensues. So, you might have a combination of herx/flaring going on….both with the mino pulsing and stress/mtx rebound.
Do you have an AP doc at the moment you could consult? If not, you may find it helpful to ask Dr S in Ida Grove, Iowa, for his advice in a phone consult. You can get his contact info by jotting a note to apdoctors@roadback.org He will probably be able to offer you the best advice for adjusting your AP dosage and/or adding in an an anti-inflammatory to get you through this rough patch.
Hope you find your answers soon and hope your daughter feels better soon, too!
Peace, Maz
Maz,
Thanks so much for your reply.
I have an appt. with Dr. S in Aug. Due to my concerns of how I feel, I called this morning to see if I could get a phone consult. (this is the 2nd time in two weeks I have called and asked for a phone consult) and was told (again) that he won't do phone consults until after I meet with him in person for my appt. So I tried to get answers from his nurse?/receptionist? but was disappointed in that the response was very vague. “We can't tell you whether or not to take MTX. You can discuss that with Dr. S when you see him.” I have read on the BB that others have spoke to him on the phone. I don't know what to do to get through!? I'd even be willing to pay for the phone consult but can't get past “Lou”.
Peace,
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Hi Amy;
I got myself off of MTX a few years ago and was scared to death that my SD would act up even more than ever.It did not happen and the SD stayed stable,not worse.It takes a couple of months to totally leave one's body and only then did the AP start helping me.You need your immune system to work and stopping MTX at the time of some sort of infection will not help at all. LynneI have seen posts (I don't know if it was here or on the Lymenet board) from people that actually felt better when they had fevers or maybe it was after the flu. Somehow it diverted the immune system for a while.
I hope things calm down for you soon and that maybe your appointment gets moved up somehow. August must feel like an eternity away.
I don't mean to change the subject of this post but Parisa's message caught my eye. Everytime I've ever had the flu my RA goes away completely. My doctors have never believed me but I know it is true.
Is this a symptom of Lyme or does this happen to every RA patient?
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Hi all,
Thanks for your kind words and advice.
Update: Called an AP doctor regarding the flare. Was recommended that I resume MTX for now as stopping cold turkey induced a strong flare.
Will continue on with the Mino as I was, but will go back on MTX for now and slowly wean off.
Slow and steady wins the race!
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Hi Amy,
Are you sure you didn't catch what your daughter got? Sometimes when I catch a bad bug my arthritis flares horribly. I'd be tempted to see if you can ride it out for a week if I were you before restarting the mtx. I know it's hard to even think of doing that when you're in the midst of a bad flare, but I often flare and then find it settles again in a few days.
Plus, are you in the run-up to your period, or might you have just ovulated? I know it sounds strange, but I've recently connected these two events to flares in my own case. It seems I'm very sensitive to hormonal fluctuations, especially estrogen drops.
Just a thought… Hopefully the minocin will kick in very soon. But you do need to protect your joints and keep going in the meantime, so do whatever you feel you have to do, to be able to continue the AP.
Best wishes,
ruth
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