Hi Pitt - I was treated for several years with an antibiotic protocol like the one supported by Dr. Brown and The Road Back Foundation (100 mgs minocycline 2 times daily). Minocycline, however, was just one of the meds I was taking as it targets my specific inflammatory "overgrowth," which is IL-6. I also took biologics, prednisone and mtx because I have an aggressive form of RA. My CCP when I was originally dx'ed 14 years ago was 188.

I don't see where you need to jump on a cross-country flight to get more information about treating RA with an antibiotic protocol. Many rheumys are familiar with this protocol, mine included, though they are not all going to be advocates. Even if your rheumy is not familiar with antibiotic treatment, you may be able to schedule a call with the doctor, or your rheumy might do that on your behalf. With a CCP of 152, you've got a strong positive and will most likely be considered an ideal candidate for biologics and mtx as opposed to antibiotic treatment, which is usually considered to be more effective for those with mild symptoms. FYI, even antibiotic treatment has side effects, and minocycline is considered a DMARD.

I'd say that if your main concern is remaining functional for your young son, go aggressive early, arrest the symptoms and back off the meds as you're able to once you've stabilized. If I had to handle my treatment all over again, I'd have taken more aggressive treatment up front and scaled it back as my symptoms improved.

years ago, the road back foundation returned a local doctor to me and I followed up with treatment with him. I got sicker

maybe you will be able assess your functionality, today, and make a decision if you want to make a small side foray. just remember that if you are taking prednisone, also, you will not really be able to tell.

if you are not coping at all (activities of daily life, walking, basic child care for your son, have to quit work) you may need to re-assess your treatment options.

what is the opinion of your rheumatologist?

I figured he/she might not have mentioned methotrexate due to child bearing in the present or future. sometimes that happens based on age and circumstance

try amazon for a used RA primer that encompasses all therapies or if you have a kindle. it makes you feel empowered to have all the information on the treatment paths when you go to appointments.

I thought about pursing an antibiotic type treatment, but i feel that due to my multiple allergies to antibiotics. penicillian, dioxycilin hyclade and clarithmyican are my big three but all antibiotics tend to get a reaction of some kind. I did not think it was safe for me. This is one of the times where you have to do what you feel is right with your body and sit down and have a discussion with your doctor. bring a family member if you feel like you might get overwhelmed and just discuss different options that might work for you.

My doctor and i always spend each appointment discussing goal we want to see by next appointment and thing we might change medication wise and it always doesnt work out. I was supposed to remain on Humira for a while but that changed quickly to enbrel and then now im on to infusions but my rheumy has classified me as severe to open up more option.

the joys of each of us having a different path on this journey, we dont know how things will work.

Hit it HARD early and you can actually affect your disease and the progression of it. I was scared of methotrexate 20 years ago and tried to "manage it" without. HA! I have been on Biologicals for 15 years. I do regular blood work and haven't had ANY bad panels come back. I work OVER full time. I ride horses, ride bikes, run (when I can), I wake board, snow ski and am a photographer and writer in my "off time". I can't ALWAYS keep the same pace. Oh and I just recently jumped out of an airplane and HAD A BALL! I do not (personally -- I am NOT a doctor) in hitting it hard as early as you can. My best friend was diagnosed a year ago and she was on Embrel within a couple of months.

You don't need to race around the country for answers. You really don't. I know the feeling that you NEED to DO SOMETHING and do it NOW is strong. Be as present for you can for your child and work hard to get OUT of fear and get IN TO education. Local, available education. I was a board member for the Rocky Mountain Chapter of the Arthritis Foundation -- I will tell you that ALL board members were sufferers too. IF there was a magic pill or a cure or a quick, simple fix THEY would be shouting it out from the top of every hill. Their mission is to put themselves out of business (AKA a cure). So they are a wonderful resource and rely on their information. It is a great place to start. With the Internet everyone can look like an expert...

I have been on Enbrel and methotrexate for 5 years - the ONLY side effect I have had is that a few strands of hair fell out at the higher dose of methotrexate (5 pills per day). I am taking 3 pills MTX and 1 50 mg sure click Enbrel per week. I am sure I would be a mess without these drugs. I took prednisone for 1 year in the beginning. I would be more worried about taking prednisone long term than MTX or Enbrel. I agree, attack it now. Deformity cannot be reversed (as far as I know).

When I was first diagnosed, I was really worried like you - I have a disabled husband and I was thinking, how am I going to take care of him? Well, with the help of the meds I can not only take care of my husband, I can bowl, do nice long walks, work 35+ hours per week, and exercise.

Yes, I hate having to be on these drugs, but I need to function!!!

It was the treatment that put my mother in full remission for the last two decades. She had extremely aggressive and severe RA and had twisted hands just four years after initial symptoms. That's when she left her rheumy and drove down to Dr Brown.

I used it for first ten years. It wasn't as effective for me. But did keep my severe RA down to a tolerable moderate level. It also kept me from getting obvious deformation.

Number one rule with the Minocin is to only use the name brand pelletized (time release) - AKA the blue capsules. The one time I went generic - my teeth changed color and every joint doubled in size within just four weeks. The road back foundation has articles on their website discussing the generic inconsistencies.

I'm now in full diet induced remission. Food allergy testing confirmed what I had accidentally stumbled across when I lost weight on the paleo diet and my RA & IBS disappeared - developed food allergies/sensitivities were the culprit behind my systemic inflammation. My rheumy didn't act surprised at all. So I recommend that anybody with an inflammatory autoimmune disease at least gets tested. Won't hurt much - and just might help you reduce your inflammation on your own.

Good luck in your journey!

2scicrazed, just curious if you had a positive ccp test. my doctor said this is usually associated with more aggressive RA. He tried plaquenil because at the time of my diagnosis we were trying to conceive. At this point, another baby is not something we can see for our future sadly. Just want to stay has healthy as I can for my 3 year old son.

Dear Pitt -

Let me tell you something about RA and having kids...don't give up the kids because of this stupid disease! It took that away from me and I am now nearing 50 and I never got to have kids because of this. I tried several times when I was married. Went off all my meds for extended periods of times, saw fertility specialist, etc. IF you and your hubby have a solid marriage and you have always dreamed of more than one child don't give up that dream. I feel empty at times -- I never, not ever saw myself as being childless and here I am... You are likely to get remission in your 2nd trimester anyway and it is likely to last throughout the pregnancy. RA will usually flare badly after birth. You would need to be rather calculated about it and plan for it and have help arranged for helping you with a baby and your son for a while but that is temporary. Not having a child that you dreamed of having is PERMANENT. I know.

I know all of our comments seem like we are cheer leading and I a sense we are. But we have also been right where you are and we have made it down the road and continued with life. My first year of RA I was a full time student and I race bicycles for my college riding 150-200 miles a week. At times it SUCKED but I was defiant in the face of this new unknown and I was going to fight it with everything I had so it wouldn't take over my life. That was managing the MENTAL part of the disease which is so often discounted by other -- including our docs. The people around us CARE but they cannot understand.

My RA is also aggressive and I don't recall my exact numbers the day they gave me the forever news -- but I recall the doctor's words being "off the charts". Oh joy huh? As many of us have said we still stay active. I have completed an Ironman Triathlon, run a 50-miler, run up a 14er in Colorado, ridden my bike up another, trekked in Nepal and did a grueling adventure race in Brazil that lasted SIX DAYS where we slept 90 minutes a day. I am about to sign up for SERE school for civilians.

Your toughness, if you harness it will surprise you after time. That will be your greatest asset and it will create one of your greatest challenges. Because you buckle down and "just do it" the people closest to you will forget how much it hurts just to be alive -- because it won't show. EXAMPLE: This last weekend I bucked 7 tons of hay alone (I am 5'5" and weigh about 115 pounds). It is very challenging only 24 hours later that you are hurting too much or too fatigued to go out to dinner. My boyfriend might say "you must of over done it with the hay". Having lived with my RA for 20 years I know it had nothing to do with the hay (in fact that made me feel BETTER) -- fatigue, general malaise is its own thing -- it will come and go without a lot of explanation and it will be very challenging for you and your loved ones to understand and accept. Sammy (on this board) reminded me of acceptance. It is a must. BUT acceptance does NOT mean you LIKE it nor does it mean you surrender to it. It simply means you accept it, you prioritize it appropriately and then you make decisions with it in mind.

I am going to use a parallel example for you. When an alcoholic or addict gets sober their sponsor or counselor will tell them "do NOT make any major decisions until you are at least a year sober!" Many will tell them two years. It is all just too new for them to make good decisions that may affect the rest of their lives. Another reason for this is that they have just accepted that they too have a "forever disease" and they have to learn to live in acceptance of it. I find that same principle truly applicable here. Focus on learning about your disease and understanding it before you make seriously life altering decisions. That added stress of worry about the future will only hammer your present and stress is my NUMBER ONE trigger for a flare.

Lastly and I will shut up. Have patience with your partner. He too just learned that his life will change. While he isn't faced with your RA the same way you are, he is still going to be impacted and needs to adapt like you do.

Egad, I do tend to go on and on! I apologize.
Hang in! It is a challenging journey but it is an interesting one!
Kyle

Mom and I were diagnosed prior to the CCP test. I would assume mom's was high - since her hands were severely deformed within four years of onset.

Nowadays we are negative on all tests - but we've both been in full remission (via different treatments) for an extended period of time (me almost 2 years, her 20 years)

I would explore every option out there.
Your life & your body.
Although I agree there should be a doctor more local who would discuss this option with you.
I've thought of it & my doctor has never brought it up.
I'm severe so that may be one reason but thinking I'll mention it. After all what do we have to loose by asking?
Any doctor who does not listen & does not address a patients questions & concerns is not worth having.
I'll never understand how doctors in the same speciality can be on such different pages. Though I've discovered this is common in the medical community.
You know why some will consider & prescribe a treatment & another won't even consider it.
The proof is with in the patients. If patients have responded in the past then it may be an option for others. Educate & ask your doctor. If the answer is no the he or she should provide an explanation as to why.
There are other doctors out there. Sure wouldn't hurt to get another opinion if your not satisfied with the options your doctor provides.
Perhaps you can let us know how it goes.
Wonderful advice here.
Sammy