I was dxd with RA yesterday and am quite overwhelmed by all the
information I'm coming across. I strongly believe that external factors
(whether it be food, chemicals, prior infection, etc) play some roll in my
joint problems. However, my dr. (a young guy....I thought maybe that
would work in my favor) very quickly shot down my idea of food allergies/
sensitivity and said he would prescribe Mobic and Methotrexate for me. I
told him I have no desire to take anything I don't' have to, so I would not
be filling the Mobic prescription. And that I would rather wait two weeks
(until my next appt.) on the methotrexate so I could do some research.
So, to my question. Why would he automatically choose methotrexate?
Why are the TNF-alpha inhibators not even considered? Are there other
drug options? I kind of feel like there should have been more of a
discussion about the drug options rather than he just telling me one
drug. It seems to be a common one for RA and effective, but is it the
MOST effective disease modifying drug? The side effects are quite scary,
especially for someone who is hesitant to take anything.
I'm also not giving up on the allergy thing. I'll pay to have the test done
myself if I can't get a referral for it (still working on my GP for that). And,
I have an appt. with a 2nd Rheum. Dr. basically to get a 2nd opinion.
A little about me...I'm 32, very active, swim, snorkle, dive, garden, lift
weights, etc. I've had joint pain in my feet and hands consistantly for
more than a year. Recent X-rays showed not damage to feet, hands,
wrists, and ankles and I go for MRI's on those next week. My RA factor
was 256 and my anti-CCP was 163.
Any advice or input on the drug situation would be helpful!! Thanks!
alot of times drs have to go through certain "stages" of meds so that ins companies will cover them. From what I read the meds that he wants you to take are pretty common when you are dxd. Good luck! Welcome to AI!
Shannon
JBNole97 - Hi, welcome to the board.
I very much believe that food allergies, sensitivities, leaky gut contribute greatly to our getting these diseases. I have a friend that totally controls her PRA with diet and supplements. That being said, it is an extremely hard road to do and many people chose to do the standard meds instead.
Karin68 recently posted about delayed onset allergies in food testing. Her post totally jived with a lot of my research and I'm thinking of getting the testing for myself while I try to 'heal the gut'. You might run a search here and read the post. Absolutely fascinating.
There is another drug option - antibiotics. If you're interested in this option try www.roadback.org or get the book "The New Arthritis Breakthrough" by Henry Scammell. The Antibiotic Protocol (AP) has given me my life back.
Pip
P.S. You sound really logical for somebody newly diagnosed. I was FREAKED and it truly showed. :-)
[QUOTE=Pip!]JBNole97 - Hi, welcome to the board.
I very much believe that food allergies, sensitivities, leaky gut contribute greatly to our getting these diseases. I have a friend that totally controls her PRA with diet and supplements. That being said, it is an extremely hard road to do and many people chose to do the standard meds instead.
Karin68 recently posted about delayed onset allergies in food testing. Her post totally jived with a lot of my research and I'm thinking of getting the testing for myself while I try to 'heal the gut'. You might run a search here and read the post. Absolutely fascinating.
There is another drug option - antibiotics. If you're interested in this option try www.roadback.org or get the book "The New Arthritis Breakthrough" by Henry Scammell. The Antibiotic Protocol (AP) has given me my life back.
Pip
P.S. You sound really logical for somebody newly diagnosed. I was FREAKED and it truly showed. :-)
[/QUOTE]
Welcome! You asked about other drug options, I just wanted to second what Pip said : AP has given me my life back, too!
Best wishes and take care, Karin
Starting with mtx (you didn't say how much) and the mobic (which one?), is the beginning of a long process of stopping your pain!! , this is very important and , of course, preventing joint damage. joint damage begins to deteriorate our joints right away. (I have no feeling in one of my little toes, from joint damage , because I FAILED to treat my disease at the beginning of my diagnosis.) I was in denial and kept thinking it must be something else....it took me 5 years to begin RA meds and the treatment. I took Plaquinel at the beginning and then mtx.
Because of an operation in Dec. last year I've had a hard time getting back to where I was (only taking a very small amount 10 mgs of mtx and sometimes less) you can read below my extensive treatment now.
This is a complicated disease and we on the forum call it a 'journey' to figure out what meds work best for us. Nothing works quickly enough, we think! Prednisone is the fastest, but you may want to read up on that one as it is only a temporary help until one of the others 'work'.
I'm glad you are getting a second opinion, most of us have gone through more than one doctor before we find the person we trust and like best, that doesn't mean we don't question the treatment (constantly). I hope you get relief from your pain, as you want to remain active, you are young and have a lot of energy which is a plus with this disease. Good luck on your journey. Please keep posting on the forum and let us know how you do with the second doctor. Lynda
A factor that no one has mentioned is that almost all RA drugs stop workingThe other thing may be that your RA isn't too serious right now, and may not become so.
Humira, Enbrel and Remicade are prescribed for moderate to severe RA..
There are many people who are under control completely on MTX alone.
If you have side effects they will probably be the most severe the first few times you take MTX. Take it when you can give yourself an evening and a day to feel a little rocky.
As for the folic acid, you can buy it OTC.. I do that and take 4 tablets on the day after I take my MTX. I used to get pretty bad canker sores, but now it seldom happens. watch out for an oral fungus too. your tongue will get very coated, and you will need to take an anti fungal for a few days.
I've been on MTX 3 years and it is essential for me to make the Remicade effective. You'll see me post often about my decision to absolutely not drink alcohol and not take HDL lowering meds to allow my liver to focus all its energy on metabolizing the MTX.. but then I'm a real crank about some things.
Welcome to AI; You've come to the right place as you can see. Combined we have many years of experience.....and although you'll get many different opinions on medication options you'll always get really experienced advice here.
I agree with Gimp & Cathy. I've been on MTX for about 5 years now. I have little to no side effects and it's made a dramatic difference in my well being. I started out on less effective DMARDS and worked my way up to this. MTX wasn't given right away when I was first dx'ed or I would have been on it at that time. I have also been on Humira after two years on MTX. You kind of need to exhast all of your DMARDS before moving up to the biologics. RA is a progressive illness and over time certain medications will no longer work for you. You don't want to start with "The Big Guns" because those too will over time stop working and where will you go from there? No; start low and work your way up. You want to use the weakest option and see if it works before moving up.Don't think that if you start with the stronger medications you will be cured and never have to worry about it because it just doesn't work that way. You still have many years ahead of you to deal with this illness. Pace yourself.
The second opinion is a good idea. Your relationship with your RD is going to be a long term relationship. It's important you find someone you like and someone you feel like respects your opinion and won't just rush you through and throw meds at you without explaining what's going on. It sounds as if you and your first RD might have a difference of personalities. See the second one and then decided which one better suits you in the long term. It's really important to have a doctor you like.
Good Luck! RA treated early is very managable. Don't put off treatment too long.
Again; Welcome.
I agree that you should get a second opinion, if only for your own piece of mind. A good doctor isn't offended by it, often encourages it. Just so you know, I was recently diagnosed, it's only been a few months and only since Feb that I had any symptoms that I noticed. I said no to MTX when the first RD tried to put me on it. In fact, I high tailed it out of his office and never looked back. When my current RD (whom I like alot) put me on it, I had finally resigned myself to the fact that I needed something, what I had wasn't going away, at least not any time soon. The MTX helped some, but when he added the enbrel, that's when life got good again. All the best to you. And try not to be too discouraged, RA is doable Welcome to the board.Everyone here has had great things to say so I will just add my experience with mtx. I do injectable and that bypasses the stomach upset you can get with the pills. I am also on a humira (a biologic) and don't know what I would do without either one of the meds.
I am not pushing for you to go on anything. This is just my experience. AP therapy may just be the treatment option that you want to look at. Pip is a wealth of information on it and just a doll and would answer any questions you have about it.
A second opinion is a good thing to get. It is your health and you are in charge of it.
THANKS SO MUCH to all of you who responded! Everything you all saidLinncn - The answer to your question is yes! There are a lot of people on the Roadback board who start that way.
We were told by our AP dr. to start mtx when our daughter started zithromax - he said antibiotics are slower to work, and we could not risk waiting that long (funny thing, the ped rheum made us wait six more weeks anyway!). We had to stop mtx because she had too many infections, and with the last set of xrays we feel comfortable staying on zith alone for now. Plus, her latest blood labs show her sedrate is normal and her CRP has dropped from 11.6 to 1.2 since starting zith!
[QUOTE=jbnole97]Thank you, Gimpy, for taking the time to explain AP in detail.
My concern has been do I risk damage while waiting for AP to work or do I take the MTX right off the bat to try to preserve my joints. I pretty much decided that I'll take the MTX but also see if one of my Drs. is willing to prescribe the Minocin. I emailed the Roadback FL contact person on Thurs. to try to identify local AP drs. I've not gotten a response yet, though.
In the meantime, I'll read the book.
Thank you!!
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Gogo: You should be a writer. That was very thorough and well-written. Thank you for taking the time to post that so jb and others might learn from it.
jb: I was scared of joint damage while I waited for AP to work, too. I bit the bullet and tried AP, anyway. I'm so glad I did. I have no joint damage. You will find the majority of AP patients respond within 8-12 months. Young people, men, and recently diagnosed, tend to respond more quickly, in 3-6 months, in many cases. You are recently diagnosed, so you have that to your advantage. I was a very quick responder. Within 3 months I was 50% better. Within 6 months I was almost 100% back to normal. I reasoned that I would rather risk damaging a joint than immunosuppressant side effects. But everyone has to make that decision on his/her own. Many people do start with another DMARD, such as Plaquenil or MTX, and wean off of them when the AP kicks in. However, AP may take longer if you are on an immunosuppressant. Personally, if I had to add another DMARD I would choose Plaquenil.
If you post on the RB board, a volunteer might respond with a list of doctors more quickly than waiting for your local representative. Be sure to include your e-mail.
Take care and best wishes. ~Karin
Gimpy...Thanks for the info. I've read a couple of articles about AP, but I can't say I've really researched it. What I did read, and seeing what you have to say makes it seem definitly worthwhile to look in to. I see my RD on Tuesday, maybe I'll ask him what he thinks.
Linda