deforming

[raindrops]

Hi everyone, this is my first post. I first found this site about 3 weeks ago. I realized while on antibiotics for the flu that my RA symptoms were gone! I asked my rheumy for dociclcline and I have been on that for 4 weeks now. My questions is this..I have had some serious deforming in my foot in the last two weeks, is this becsue I stopped the Humira 9 weeks ago? I know you can't give me medical facts, just wondering if this has happened to any of you. I have had RA since 2006, I've been on pred, humira, enbrel, arava and more since then. many thanks, Rain

[Maz]

Hi Rain,

There may be others here who can answer your question from personal experience….this hasn't actually happened to me, so I can't answer with complete certainty. My understanding of joints deforming from RA, however, is that it would have to take a lot longer, rather than occurring spontaneously within such a brief period of time. This is just a personal hunch, but I feel it more likely that the joint damage was slowly progressing and going unchecked while you were on the other drugs. Did your rheumy monitor your joints regularly with X-rays over the last two years? This might help with this question and give you a more definitive answer.

That said, very serious inflammation can cause damage quite quickly. So, if you came off the other drugs quickly, rather than gradually weaning off them, it's possibe that you experienced a whiplash effect. However, if you've remained symptom-free while on doxy alone, it's much more likely the joint damage happened over the course of the last two years and the other drugs were just masking the progression.

There are a number of people here who are/have been on the standard immunosuppressants when they begin AP, but find that they must gradually wean off them. Also, most people who do this find they have to begin AP on the daily dosing schedule (usually minocycline 100mg bid) and then, once their symptoms improve, they can change up to the pulsed dosing schedule. Going right into pulsed dosing is probably not wise if decreasing or suddenly stopping an immunosuppressant drug, because the idea of pulsing is to elicit herxing (pathogen die-off), which can be pretty indistinguishable from a flare in the early stages…as both cause increased inflammation and leave one open to joint damage.

Any reason why you started on doxycycline rather than minocycline or was it mainly because you saw improvements on the doxy while you had the flu? I ask, because minocycline (a third generation tetracycline, doxycycline being the second and tetracycline being the first) is felt to have greater anti-inflammatory benefits, which is helpful in the early days.

Peace, Maz

 

[ICmyselfwell]

HI Maz, thank you so much for getting back to me. In answer to your questions, my rheumy has not taken xrays since 2006. I see him about every six to 8 months. I am on doxy because when I called him and asked about using antibiotics he said “you can but I don't think it wll do anything” and he prescribed the doxy. I am sure if I call and asked for mino he will call that in too.what did you mean about the doses? was that 3 times a day? I am taking 100mg of doxy a day. Before RA I had never taken a med. I woned a health food store and did everything alternatively. My Rheumy told me if I did not take the meds I would die…I started taking the meds. I stopped taking the Humira suddenly when I got the flu,( I was on cypro) then due to a cyst on my back that required surgery I was on a different antibiotic. I never whet back on the Humira and it has been 9 weeks. I have been on pred constantly for over 2 years ( now down to 10 mg. a day) I guess this deforming has been in progress like you said, it's been so long since I was checked. I am very excited about AP..I can tell you the quality of my life has really improved. Looking forward to learning so much more. Many Thanks, Rain

[Michele]

Hi Rain,

My heart breaks for you that your foot is deforming…and so quickly. I'm so sorry! No matter what medicines a person takes for this disease, it just puts so much fear into our lives.

Your rheumy certainly had you on a lot of the standard RA medicines. Did you have a “remission” from pain while you were on any of these meds? I just wondered how the deforming could progress so fast no matter what protocol you were on! One of my friends takes methotrexate and low dose prednisone for her RA and I know her rheumatologist's goal is to get her in a “pain free” remission because that signifies to him that the damage is not progressing. Your story makes me wonder about that premise and why I ask whether or not the standard meds covered the pain of the disease while the damage was stealthfully progressing.

I hope the doxy works wonders for you!!!

Michele

[Maz]

[user=435]ICmyselfwell[/user] wrote:

I am sure if I call and asked for mino he will call that in too.what did you mean about the doses? was that 3 times a day? I am taking 100mg of doxy a day. Before RA I had never taken a med.

Dear Rain,

Sorry it took so long to get back to you….daughter's birthday today and was listening in to Dr S's (in GA) chat on the other BB. This might interest you….he treated his own RA and brought himself into remission on AP (minocycline)and a combo of other antimicrobials (Flagyl and Nystatin/Diflucan). He said tonight that Enbrel caused several hundred deaths last year and that it's success rate was a measley 8%!!! With the way those stats stack up, seems the risks far outweigh the results. 😕

I actually wrote you a long post last night and the screen timed me out and I lost it all :crying:, so will try and remember what I wrote. It was late, so maybe a good thing as my brain was probably a little foggy at that time, anyway. 😉

Minocycline is the preferred antibiotic for a number of reasons. It's a third generation tetracycline (doxycycline the second and tetracycline the first) and was designed for better absorption, to be easier on the stomach, as well as having greater anti-inflammatory properties. Minocin, the brand name, is used by a number of folk here and is preferred over the generic “minocycline,” as it comes in a pelleted slow release form, without any fillers, that is said to be even better. However, many do use the generics quite successfully, also.

As regards your question about dosing. There are two schools of thought on AP dosing:

The Harvard Protocol that advocates daily dosing of 100mg twice a day, as per the MIRA trials that were run at Harvard in the 1990s that were so successful. Many rheumies ascribe to this dosage and schedule, because minocycline is viewed as an anti-inflammatory DMARD (disease modifying anti-rheumatic drug), rather than that it may be having any effect on an infectious cause. At this dose, however, infectious cause adherants believe it has more of an anti-inflammatory effect and rather less of an anti-pathogenic effect.

Then there is the 'original' AP (or antibiotic protocol) that Dr Brown preferred, which involved pulse dosing. That is, taking 100mg minocycline one or twice a day on a Mon, Wed and Fri. The concept behind this is that “less is more” and the rising and falling blood serum levels of the antibiotic is thought to have more of an effect on the pathogens causing the disease. Rather than killing them, however, the idea of pulsing the antibiotic is to “re-train” one's own immune system to do the job of bug-killing itself, while minocycline works to block certain enzymes and proteins that mycos require for their existence…in effect, minocycline suppresses the mycoplasma (replication and growth) just enough so that the hypersensitive reaction of the host (us) is somewhat more controlled. When the mycos die in this more controlled way, they release toxins which result in a herxheimer reaction (or herx), an exacerbation in symptoms. Herxes are, therefore, considered to be a good thing. So, initially, there may be a worsening of symptoms, but over time, with pulsing, the herxing becomes predictable, less severe and less frequent. Regular blood monitoring will reflect this improvement, though one may feel better before bloodwork improves or vice-versa.

There is masses of info on the main roadback.org website under the education tab. You can learn more about minocycline in the “Physician's Packet,” by clicking on “Current Protocol” and also by reading through the “Historical Protocol.” Also, if you can get a hold of a copy of “The New Arthritis Breakthrough,” by Henry Scammell, then this should answer all your questions and give you a much better idea of the rationale behind pulse dosing and the hypersensitive state.

It's also worth noting that although minocycline is preferred today, Dr Brown did use the other tetracyclines in various doses and schedules, as well as various combos of antibiotics, treating each patient on an individual basis. A good AP doc should help you with figuring out what would be best for you in your case. As your rheumy was open to you using doxy, he may be open to consulting with one of the best AP docs, Dr S in Ida Grove, Iowa. If so, you can get Dr. S's info (as well as a list for AP docs in your state) by jotting a note to apdoctors@roadback.org . Alternatively, you could also photocopy the info from the website (under the education tab as above) and ask your rheumy to read it, saying this is what you'd like to try. You never know….it might work! 😉

Rain…hope this answers everything. If not, ask away! You've found a great site where there are lots of others who have taken the AP path. If you hang around for a while, you'll pick up lots of great tips to navigate your road back.

Oh…one last thing…am sure you must already know this, but are you taking a good quality probiotic with your doxy? The antibiotics kill both the good and bad bacteria in the gut, allowing the fauna (candida/yeast) to thrive. So, it's important to chase your antibiotics with probiotics daily, spaced at least two hours after taking your antibiotics. I use PB8 and take 8 veg caps daily, although there are other good probiotics out there that others prefer, too.

Wishing you all the very best on your road back!  I'm sure you will have a wealth of info to share with us all, too, having owned your own health food store! 😀

Peace, Maz

 

[ICmyselfwell]

HI Michele, thank you for your reply. I have been on pred since 06 starting on 40 mg. a day and now I am down to 10mg. Every time I try to go lower than that I go into a major flare, first hitting my lungs and making it very difficult to do anything. As far as remission goes; I have months where I feel  great “for having RA” my great may be someone elses worst day…then when I flare, I could be back in a power chair. I really am begining to think the Hunira just made me think no damage was happening, because I felt okay. As I have said my rheumy has not ordered one xray since 06. This is a wierd weird disease. I think I am on the right road now though. Thank you so much for your concern. I am very grateful I found this site. Many Thanks, Rain

[ICmyselfwell]

HI all, just want to say that my member name ICmyselfwell and Raindrops are both me…I needed to log in from work and for some reason I had to come up with a new ID

[Michele]

IC Rain!

(I like the combination of your names…I love to see it rain because we've been in a severe drought!)

Thanks for sharing a few more details. The flare in your lungs sounds very similar to my symptoms! For me, when it is really bad the whole rib cage hurts and I get a feeling of air starvation. I haven't heard of too many others with an RA dx having this symptom. It really is a weird disease.

As you have more questions about using antibiotics, ask away on this site! This is a great forum of people!

Michele

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