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i am at a crossroads. i am 33, an avid runner & weight lifter, and i was diagnosed with RA in august 2009. i started on MTX and have increased up to 15mg/wk with little to no results. i read the Road Back and convinced my rheumatologist to let me try antibiotic therapy. i am taking minocycline 100mg 2x/day and have been for 2 months with little to no results. after my appointment today, my doctor wants to start me on enbrel. i honestly do not know what to do. i am over the pain and stiffness and want to feel better, but i'm scared to start such a heavy duty medicine. have i given it enough time? do i need to try dietary changes with the antibiotic treatment to see better results? i would love to hear from anyone who has experienced something similar.
Are you still taking methotrexate? What else are you currently taking for your RA besides minocycline?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinWhen I started AP the doctor told me that it would take at least a year before I would start to feel better, but I've had PA for many years. Since you were just diagnosed I don't think it should take that long, but 2 months is probably too short of a time for any noticeable improvements.
I've been on mtx and 4 different biologics. I also take prednisone, I can tell you from personal experienced to avoid it if possible. RA can cause joint damage very quickly, is your doctor concerned about this? It would explain why he wants you to use enbrel. If you're not looking at severe joint or organ damage, I would wait at least 6 months for AP to show improvement before adding enbrel, but I'm not a doctor and I don't know your history. I do know that it can be very difficult to stop taking biologics without experiencing a rebound flare which causes you to end up right back where you are now. It's not as difficult to discontinue as pred, tho.
I can tell you to ask for the enbrel that you mix yourself, not the premixed syringe. The premixed has a preservative that burns when injected, the one that you mix yourself does not. Trust me on this, it's not fun. The self mix is very simple to do, so easy a caveman could do it, and it doesn't hurt at all.
[user=1902]efuller[/user] wrote:
i am at a crossroads. i am 33, an avid runner & weight lifter, and i was diagnosed with RA in august 2009. i started on MTX and have increased up to 15mg/wk with little to no results. i read the Road Back and convinced my rheumatologist to let me try antibiotic therapy. i am taking minocycline 100mg 2x/day and have been for 2 months with little to no results. after my appointment today, my doctor wants to start me on enbrel. i honestly do not know what to do. i am over the pain and stiffness and want to feel better, but i'm scared to start such a heavy duty medicine. have i given it enough time? do i need to try dietary changes with the antibiotic treatment to see better results? i would love to hear from anyone who has experienced something similar.
Hello efuller,
Glad you are here, but sorry you have the RA diagnosis.
You say you are an avid runner and weight lifter. Are you still trying to run? (I've read numerous times that when people exercise strenuously, this can add to onset of chronic illness if minerals, etc. have been used up that the body needs to keep itself well, and if sufficient nutrients have been used up and not replaced. (Just thought I'd mention this, if you have not thought of it.)
For RA, 100 mg. twice daily is a large dose for a beginner. Usually, only scleroderma patients take that large a dose. Dr. Brown generally recommended 100 mg. twice daily, but pulsed… only on M-W-F. Also, two months is a very short time for results. We've a saying around here: “Slow and steady wins the race.” Generally, it may take 4 months or more before we “turn a corner” and begin feeling better and know we are on the “road back.”
You mentioned your doctor wants you to start on Enbrel, and you feel you are at a crossroad You apparently are young, and with the right treatment, you should go on to improve every day after a few months. There are very few on this board who have posted that they are on Enbrel. For myself, I wouldn't consider it if I was as early in AP as you are; and even then, as a last resort. But, that's my own opinion, and may not be yours.
Have you gone online and searched and read about the side effects of Enbrel? If not, that might help you decide.
You asked about any needed dietary changes. I believe we always need to assess our diet and eat healthily, address any sensitivities, and especially be wary of foods that contribute to yeast overgrowth while we are on antibiotics. Also, everyone on AP therapy needs to take large doses of probiotics daily to replace the good gut flora that abx kills. The gastrointestinal system contains a large part of our total immune system, and manufactures our B vitamins, among other functions.
eF, there are so many knowledgeable people on this board, and we all want to help each other. Feel free to ask your questions. You are probably aware that there is also a search window at the top center of the screen where you can do searches for posts on different subjects.
Best of luck to you!
AF
My personal opinion is that this must be your own well informed decision. If you have not already done so, I highly recommend that you read the book, The New Arthritis Breakthrough, by Henry Scammell. If you read it earlier, before beginning the minocin, then I suggest you read through it again and study the parts regarding the basic reasoning for this therapy. If you buy into Dr. Brown's rationale for antibiotic therapy, you will have your answer. Then from there you will need to look for additional avenues to support your immune system and fight the infection. That may be by using a combination of antibiotics, it may be by adding supplements that address your specific issues, and it may be by adhering to a specific diet. But this, in my opinion, needs to be based upon whether you agree with Dr. Brown's underlying reasoning for the use of antibiotics. Just minocin works well for many people, but as others have posted, not usually as fast as two months. Two months of minocin would not really tell you anything. However, in your shoes, if, after two months I was not noticing anything one way (ie feeling better) or the other (herxing) then I would consider a more aggressive AP protocol such as adding another antibiotic, or adding a supplement, such as bromelain which is known to potentiate the effect of the antibiotic.
In my own experience, I have three family members with rheumatic diseases. My daughter has systemic scleroderma, she started AP therapy with 3 days of IV Clindy, had an allergic reaction and had to stop the IVs. About one week later, she started the oral minocin. I believe that even the three days of Clindy did have a positive impact and the minocin was clearly working and she was showing improvements within a few weeks.
Our next family member to begin AP was my husband who was diagnosed with RA in August 2008. He started initially on minocin alone for about 6 weeks. Any improvement, or lack there of, was not clear. When he got into the AP Rheumy, he began a combination protocol that included Minocin, Flagyl and Zithromax. He noticed clear improvement within a few weeks of starting the combination of antibiotics, he was symptom free within about three months after that, a total of five months.
Now, to me, I have fibromyalgia. I started a combination AP in July 2009. I have some better days and some worse but I have not had any clear improvement. I went off the antibiotics for six weeks at the beginning of January and I didn't really get any worse either. Is is working? I don't know. What I do know is that I have many infections and viruses. I know that I have high levels of lead, so I believe that is impairing my immune system from normal function.
My point, I guess, in summary, is that this treatment is different for each patient. We have different genetics, different toxic exposures, different diet and intolerances. I believe that your best chance at a healthy, long term and full recovery is to become your own advocate, learn all you can little by little and navigate your own road back to wellness. If you doctor is pushing Embrel after only two months of minocin, clearly, your doctor is not AP literate and supportive, if you really want to give this therapy a chance to work before you make the decision to take a biologic such as Embrel, then you should consider at least a consult with an experienced AP doctor. If that is not accessible to you, you will need to be your own advocate and educate yourself fully so you can make the best informed choices for your treatment.
Good Luck!
Cheryl
Hi efuller,
Welcome to the RBF discussion forum and glad you found us! 🙂 Nothing to add to the great replies above except that if you decide to consult with an experienced antibiotic protocol (AP) physician, would be happy to send you a listing for your state or the most experienced list, if you're able to travel. Just let us know where you are.
Peace, Maz
Hi efuller,
Most of us here have had tremendous results without the use of biologics. Granted, it may be tricky finding what will work best for you, which is why it's important to educate yourself on your options so that you can lead your doctor to make changes when necessary. You may benefit from a round of Clindy IVs, or you may benefit from combination abx, but since your set of infections is unique to you it will take a little detective work on your part.
Two months is still early in the game, but something you could do now is work on detoxing. Sweating in a sauna will make your joints feel so much better if you can work that out. It's important to pay attention to diet, sugar and simple carbs that turn into sugar, lead to increased inflammation and feed the yeast. Eat clean, drink lots of water, and I would take it easy in the gym. Weight lifting right now could cause joint damage that will be permanent, so maybe swimming, walking, yoga, etc. would keep you in shape without losing ground.
This protocol is never fast enough, but it does work so try to hang in there.
Take care……kim
I started with minocycline 200 mg./day, as you have, with little results. My doctor added Ceftin, and it immediately improved my leg pain and stiffness. I don't know why Ceftin worked, because it is not an AP treatment, but it did for me. There are many things that can affect your progress including multiple infections and viruses.
Something I learned early on (by many on this board), was to use systemic enzymes; nattokinase, bromelain, neprinol, lumbrokinase, etc. That alone, made the stiffness in my leg improve. The blood gets really thick and sticky with chronic illness, and can prevent the antibiotic from penetrating due to the fibrin that the sticky blood produces.
Clindamycin IV has been the best medication for me. You may want to consult with and experienced AP doctor, as they are the ones to prescribe this kind of treatment.
It's a journey, finding out what is best for your body and what resonates with you. There are many helpful people here who will guide you in your search. For some minocycline is the answer, and for many of us, it is not that simple.
nancy
Hey,
Just wanted to say hang in there. I'm not sure your medical situation but wanted to post about Enbrel. My doc put me on it first thing last March. I did 8 injections. I was acute when diagnosed and had pains on the balls of my feet, etc. The 1st injection helped tremendously but with each subsequent injection my pain would come back. After 8, I started getting an internal head tremor. I searched that on the web and found others had the same issue. I also found shocking side effects. I was sort of angry at my doc for putting me on this drug and not discussing my options. I stopped and then did the MTX route. That caused somatitis (mouth ulcers), which told me it was strong and my body was reacting negatively. I also did some research on the MTX and discovered one can almost never get off of it, until the body develops bad side effects, like liver damage. My doc wanted me to try other anti-TNFs like Simponi, but by that time I had found AP and decided that was all I would do. Once you are on these strong drugs, you have to keep jumping around, as they lose their effectiveness. It is just a huge drug rollercoaster. He did say in my situation (yours may be different), that I had a year window before “significant damage” would start to occur. I was willing to take that chance. I am still glad I did. My pain is almost all gone, even though my labs are elevated.
If you choose Enbrel, my experience was first on the prefilled syringe. They were painful. I had to “sing to myself” to do this each week. They really did hurt. Then my doc saw the big red welps they were leaving on my leg and changed to the autoinjection. I liked those much better. They were quick and hardly any pain. But, of course, it stopped working. LOL. Just my 2 cents.
Good luck to you and keep asking questions. Everyone here is extremely helpful.
JP
Efuller,
I just wanted to relay my experience. I was diag. with RA last Spring. I received my first round of IV Clindy, fore 5 days, then began oral mino. 100mg. twice daily. At first I got worse, I mean so bad that I had to use a walker, and could not get up from my bed without help. It was a rough 6 weeks or so. Then I began to feel better, and better. I have been doing really well, until a few weeks ago, I began having some pain in my hands wrists and arm. Also the brain fog and depression were comming back. I contacted my AP doctor, who agreed with me that I would benefit from another round of IV Clindy. This is not uncommon to have IV's more than once. I was told that in the beginning. So, shortly I will be going to Iowa again for this treatment. Now saying that, I will say that , I am very sure AP works, because I got better……………….When I was first diag. my feet hurt so bad that I always limped and shoes were murder for me. I couldn't hardly do my housework, peeling potatoes, dishes, sweeping, was all just to much. I can do all those things now…. I know that the bugs can take a long time to kill off. This is why I am going to have the IV's again. This may sound like I'm talking in circles, so if you have any questions for me, please just ask.
Don't give up just yet, on the AP. You may need the IV's from an experienced AP doctor.
Good Luck,
Judy
Hi efuller,
Sorry to hear you are having these troubles. 🙁
Diet was a question for me over a long period of time. I tried different things I'd read about like glutin free, no night shades, etc. I have now had success by finding out my allergies via blood tests. For me it is milk, glutin, eggs, soy and I was already avoiding processed sugars. Diet helped a lot; but only once I knew for sure what to avoid. The blood tests were worth it.There are a lot of glutin and dairy free substitutes available now, too. 🙂
Good luck!
MicheleIt doesn't sound to me like you have done much homework. I would start by reading past posts in this blog until your eyes hurt.
I personally managed to avoid methotrexate and Embrel, but it took A LOT OF HOMEWORK(i.e., studying all the antibiotic/diet/anti-inflammatory/type-of-doctor. etc. possibilities and testing different thing until I found out what works for my body). Because, unfortunately, there is a lot of variability in RA, and what works for me might not work for you or vice versa. So, in RA, you must find your own path to salvation. although the necessary information is here for the taking.
I agree with SuperPerro, do as much research as you can. There is a lot of misinformation floating around out there. I know people on biologics in remission for over five years. Not everyone has to “jump around”. The nice thing is you will know pretty quick if they work. No waiting for six months or a year or more.
[user=26]superperro(RA)[/user] wrote:
It doesn't sound to me like you have done much homework. I would start by reading past posts in this blog until your eyes hurt.
I personally managed to avoid methotrexate and Embrel, but it took A LOT OF HOMEWORK(i.e., studying all the antibiotic/diet/anti-inflammatory/type-of-doctor. etc. possibilities and testing different thing until I found out what works for my body). Because, unfortunately, there is a lot of variability in RA, and what works for me might not work for you or vice versa. So, in RA, you must find your own path to salvation. although the necessary information is here for the taking.
Efuller (hope I'm remembering your name correctly),
What superperro (RA) has written, as well as others have written, about educating ourselves and trying to find what is not working right in our bodies — along with the mycoplasma, etc. lab panels — can be really good tools to know we are on the right track.
Joe has been a long-time advocate of such as Enbrel. He has written numerous times that his wife has done well on it. All of us are very happy for her.
However, if you do a search on the Internet using the words “Enbrel Side Effects” or “Enbrel Longterm Side Effects”, and read what is written, if we indeed do have infections in our body, my “take” on reading these results is that Enbrel turns off our body's immune system from responding/trying to clear the infection. (Some of the information found from the search above on Enbrel discusses how physicians need to determine if the patient is free of a couple of mentioned infections. My mind quickly began thinking: “What about any other infections I might have that they have not tested for.” We, the patients, must become knowledgeable and FIRST make our own choices of what we believe and which “Road” we are going to take. No one… not even a physician… should be blindly followed without our doing our homework. We need to know as much as possible.
It may be that you need to determine if you do have mycoplasma and other infections going on. If you do, many of us have made the decision to go with Dr. Brown's decision, and that of many other physicians, to go the AP route. The choice is ours.
AF
[user=28]A Friend[/user] wrote:
Joe has been a long-time advocate of such as Enbrel. He has written numerous times that his wife has done well on it. All of us are very happy for her.
Not exactly. My wife is on Humira, not Enbrel, and I only advocate for people finding what works for them. I don't recall ever saying “you should try this or that…”
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