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Anyone have any luck with that combo?
Finally gave Enbrel a go after stalling rheumy for 2 years. I must say the swelling has finally gone down and I feel better than I have in 2 1/2 years. I am hoping with swelling finally down the mino can work better….make sense?
Sue
Finally gave Enbrel a go after stalling rheumy for 2 years. I must say the swelling has finally gone down and I feel better than I have in 2 1/2 years. I am hoping with swelling finally down the mino can work better….make sense?
It all depends on why you have your disease. If it is a legitimate auto-immune response to your own cells, if there even is such a thing, then mixing Mino and Enbrel will probably do no harm and may help in some mysterious way. If your disease is at heart a microbial infection then the two medicines will work at cross purposes. I believe the latter, but I have no proof to offer you other than indirect proof vis-a-vis the Jarisch-Herxheimer response and some other circumstantial evidence. I do think there are times when some steroids or biological immune suppressors are appropriate. Most SARS and Anthrax patients from that scare a few years back who survived it did so because doc tamped down their fatal immune response with steroids before their own body's attack against the microbes killed them. No doubt there are excellent times for us to use a steroid or biological in our fight against rheumatic disease, if you like I, believe in a bacterial etiology. But if you think your disease is not microbial then taking Enbrel makes sense. Your doc almost certainly believes so and almost certainly thinks that the Minocycline you take is only immuno-suppressive. Since the brightest medical minds among us can't sort this out then it is left to us patients to make our best reasoned choice and to seek appropriate treatment.
Following that line, Minocycline works by gumming up the bacteria's ablity to make needed proteins. The bacteria have an organ called a ribosome. The bacteria feeds gene information into the ribosome which then attaches the genes to matching amino acids. These are assembled in the proper order to make a protein and the gene is then reused to make another protein. The whole process looks something like closing a zipper, as can be seen in this cool video. http://www.youtube.com/watch?v=Jml8CFBWcDs and here http://www.dnatube.com/view_video2.php?viewkey=4281b7c95cd7e7462349. The Minocycline fits into one of the input or output channels on the ribosome and basically constipates the bacterium's protein machinery. Zithromax and Clindy work the same way but on different parts of the ribosome, so all 3 together would really plug up the bacteria. That means the bacteria can't make whatever chemicals that it needs to evade your immune system or to make whatever sack it lives in, or too prepare to make baby bacteriums or whatever it may need. But the Minocycline doesn't kill the bacteria, it messes with it, interferes with it, temporarily cripples it. It is up to the body's immune system to finish off the bacteria, now that it is suitably weakened. So if you shut down some needed part of your immune system then true, the Mino will still interfere with the bacteria and may even kill some, but without the immune system the bacteria may recover completely (until the next dose of Minocycline). It think it works out to a stand off or stalemate, more or less. So I do not think that Enbrel will help the Minocycline get to the bacteria. Enbrel is only a reasonable long term medicine if you and doc are sure that your RA is not bacterial.
Hi
If the swelling is down and you are feeling better –then you have a solution to your problem —-Seems to me if the cause is autoimmune or whatever then you have the enbrel to help –if it is bacterial then the minocin is there –ALTHOUGH I firmly feel that minocin works in many many ways beyond being an antibiotic that our medical and scientific community does not understand and quite frankly does not care to find out !!!–unfortunately
TO JOHN –could I be mellowing 😀
RichieIt's great to start feeling like your old sef, isn't it?
Nobody really knows why minocycline works. As Richie said, it has many properties including an anti-inflammatory effect.
Anyway, great news! Hope it continues.
Gentlemen,
My question along this line of discussion is: If Mino (and the other usual suspects (zith & clindy)) are indeed acting as an immune-suppressants to counteract these “autoimmune” diseases, then how is it that people are able to stop using the antibiotics for long periods, or even forever without the symptoms returning? If the antibiotics are simply suppessing the immune system then certainly any symptomatic benefits gained would disappear soon after the medication's half life.
I know of many AP patients who achieved remission and then either went off or significantly reduced their antibiotic use (like once every six – twelve months).
I know that my question is mostly rhetorical, but this is my question as I read this discussion on whether (in general) these diseases have some type of infection at their root.
Cheryl
Good question Cheryl. Per the microbial theory it is obvious, they are killing microbes. The real question for the microbial theory is why can't the antibiotics kill every last one of the microbes. That is a good and tough question.
Per the auto-immune theory the answer is magic. They don't know why we have the disease (idiopathic), what causes it. They believe in spontaneous remission so to those docs that is the best explanation for long term remission on antibiotics. As far as that goes, how many rheumatologists believe abx can give long term remission. Not many I bet.
Hi Cheryl,
Good question. Wouldn't it be great if rheumies could know which one out of ten patients who walk into their office are going to remit naturally? RA is so different for everyone – with prolonged periods of natural remission for some, unrelenting symptoms for others. And that is without any medication. Throw in a variable like a medication, and to me its anyone's guess regarding why some people get relief and others don't. Of course that's just my opinion.
Joe
Funny John, we both mention natural remission. I take it you don't believe in it? A cold goes away on its own – why can't RA?
Colds don't go into natural remission. When the virus is finally recognized for what it is the body mounts an attack and destroys it. It is finished, dead and gone. But that particular type of virus will mutate and the new virus will not be recognized by the adaptive immune system so we become susceptible to a NEW disease from a new infection that just happens to behave like the last. Colds don't go into remission the way that say, herpes does.
I do believe in natural remission for rheumatic disease or rather, I think that some of us probably have a sort of balance between the immune system and microbes. I think sometimes our immune system is somewhat ascendant and sometimes the disease is. Christina H. had JRA for 30 years or so with bad years and better years. She claims that her disease didn't go all to hell until she had a couple of blessed years on the immune suppresants including TnF blockers. Then one by one the DMARDs started failing her. That would make sense if the disease is truly microbial. The microbial model as I understand it is quite self-consistent. But it lacks about a million dollars worth of confirmation or rebuttal in a modern microbiology lab with today's gene sequencing tools. Until then all I can do is wave the incense censer and make only argumentative cases. But so too are the ACR.
If I were in your position (you and your missus) I might do about the same as you. AP didn't produce results for you in the more or less promised time frame. The TnF blocker has brought immediate benefits for quality of life and health. Meanwhile you are hedging your bets by watching other models and therapies. In your shoes I would probably find that compelling, for now at least, and I would change little. But I took a different course and had very different results.
john
[user=3]John McDonald[/user] wrote:
The real question for the microbial theory is why can't the antibiotics kill every last one of the microbes.
I guess my point is that sometimes they DO kill all the microbes, or at least enough to let the immune system step up and do it's thing on the remainder or any new ones that come along. I assume that these people that enjoy long term/permanent remission after AP are not living in a bubble.
Cheryl – I guess I would agree with that. And like you I have seen plenty of people achieve lasting remission on AP. But lots of old-timers (AP) will say that they have little niggly residual symptoms that somehow seem related and sometimes the full on rheumatic symptoms roar back. I gained health from arthralgia and despondency on classic alternate day AP. But my RA didn't clear completely from my fingers and toes and some months after reaching credible remission I did get a systemic yeast infection which brought some RA arthralgia back to the fore. Then when I started the MP I herxed pretty much everywhere in succession, eyes, then joints, CFS like symptoms, fibro like muscle symptoms, then gastro stuff, cognitive and emotional, Bell's Palsy for 36 hours and on and on to today as well. IF I am still killing microbes, and I think I am, then where did these hide during classic AP? What I am on now is essentially still AP. I am on one antibiotic each 10 days and two others on alternate days. I do take Benicar and I do avoid dietary D but I herx in response to antibiotics, not in response to Benicar or D, not to first order anyway. So here is hoping that I am killing microbes and that I am killing them more thorougly than I could on classic AP. Time will tell. Meanwhile on the MP my eyes have stopped changing prescriptions every 6 months, my bowels are like iron compared to even years before I had RA, my cognition speed has improved to what I remember from my thirties, ALL of my arthralgia is gone, some surgical sites seem to be improved and my dermatitis (dandruff) has cleared from my scalp, chest and face. In the last 9 months I seem to have lost the occasional passionate rage that I was disposed to before. I just don't get yeast anymore and don't bother with probiotics even though I am on 3 antibiotics simultaneously.
I wish we had long term data on AP patients, that we followed ourselves to our ripe old age and beyond. I would love to have something harder than the anectdotal and carbon memory based measures. I think AP works and works damned well, better than any classic rheumatic medicine. But to me, the hard question still stands. I hope the MP is an advancement on classic AP and indeed I am betting on it. But time will tell.
Meanwhile, if Joe's wife stays in remission for 50 years and I don't, then I missed my bet.
John,
I agree that it is rare that people are able to discontinue AP and remain fully in remission. We have seen many reports on this bulletin board however that the remissions have lasted frequently 5 – 7 years without medication. This begs the question, were the bugs not completely gone or was the patient then reinfected thereby causing their individual immune system to over react? I agree that in your case, after just about 1.5 years on AP, that you were clearly not in full remission as you were still having symptoms, although, from your reports greatly reduced, they were clearly still there.
Long-term, drug free remission with AP is the exception, not the rule, it seems like most people just stay on AP and are happy to be in remission or close to it. For your and I (for Jess) we are bound and determined to achieve a full, drug-free, and lasting remission. The path you have chosen may well turn out to be the key to unlocking this mystery, and I hope it is because it is the only protocol that is being used in a way in which the results will be quantifiable. I think that there may also be the possibility that other AP combo treatments (sans benicar and Vit D avoidance) may also prove effective and provide long term drug free remission than we have seen with AP. However, as there are no studies going on with other AP protocols, we are unlikely to ever know anything more than the overwhelming anecdotal evidence along with the MIRA and Harvard studies.
Cheryl
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