newbie with a couple of questions | Arthritis Information

 

Hi, I am new to this forum and to RA (but not auto-immune disease, I have had Hashimoto's for about 10 years).  I've been lurking for a couple of weeks now.  What a wonderful resource this board is!  I am sure I have the same concerns/fears/questions as everyone else, so I appreciate you all reading through them again.  I am 36 and have just been diagnosed by a rheumatologist with sero-negative RA.  My anti-ccp was less than 15, ra factor 3.1, sed rate 2 and c-reactive protein 0.9.  I have had pain in my right foot for about 9-10 months and became concerned when my toe shifted away from the big toe.  It is only on my right foot, though, and moved back over a bit with help from the Medrol pack.  My rd did x-rays of my hands, ankles, wrists and feet.  She says that she sees what she thinks is a small erosion in the bone of that foot.  No other damage is visible.  She did a full liver panel last week and is planning to start me on MTX at my next visit.  I understand that aggressive, early treatment is now considered the best route, but I am somewhat concerned about beginning a drug like MTX.

Is this the way that RA begins or should I seek a second opinion?  What is the defining criteria for RA as mild, moderate or severe?  Why wouldn't my rd want to start with what seems to be a less-toxic drug (like sulfasalazine?)  Would my situation be considered "catching it early" or not if there is already an erosion?

I thought of a ton of questions once the shock of the diagnosis wore off (a few days after my visit) and I realize that definitive answers are rare in this disease.  But, I do appreciate any of the expert opinions of those who have "been there, done that."  Also, does anyone here do yoga and have an opinion as to whether it helps?  Thanks so much for the help!

momto2boys39171.4766087963Dear Momto2boys, (what a cute name!), well not an expert just had experience.....my RA started in my feet also. It sounds like the MTX is the way to go....goood luck. sarah

Momto2boys you really were very lucky to get such a speedy Dx being sero-negative.  If you already have a small erosion in short order it can become a big erosion and I think your rheumy wants to stop any further damage.  Like you I am sero-negative but it took a long time to get Dx'd and when they finally found bone erosion I was quickly put on MTX over a year ago.  Enbrel was added 2 months ago as the MTX just wasn't cutting it alone.

I am also a mom to 2 boys, 15 and 35.  How old are your boys?  My RA started in my feet also.  Do you have swelling?  I didn't at first which was one of the reasons I had no Dx.  I wasn't put on Sulfasalazine but others are that will chime in.

Take care.

 

As Bonny said, you are very lucky to be diagnosed so early in the process
with sero negative RA. It took years for me, and now I can't seem to get it
under any sort of control.

Yes, early aggressive treatment is best for a better long term outcome.

I have been on MTX for years at a high dose with no problems. They
check your blood, but a lot of other meds need that too. it is THE first
line drug because:

It works for more people than other drugs (no drugs work for everyone-
strange but this is a coocoo disease).

It works fairly rapidly-2 to 3 months instead of 4,6, even a year for some
other drugs.

You can adjust the dosage and increase it if needed. Its a drag to start a
drug, it doesn't completely stop it--and you can't increase it. But you can
with MTX. I inject it at a high level (25mg)

Though you might be unsure it is RA, it really is better to take MTX now
instead of waiting. If it puts you into immediate remission-who can
complain about that? And if nothing changes, you can stop taking it. It is
out of your system in a couple months.

Good luck, sounds like you have a really good doctor. It started in my
feet too. But they told me it was OA and menopause for years.

BeeBeeBee39171.6602083333The only caution I would have is that RA is usually in both feet, both hands, both hips, whatever. It's not always as bad in one as in the other, but usually the parallel joints are affected.

MTX is a potent drug - you don't want to take it unless you really need it. I'd be more confident if your doctor was SURE she saw some erosions. The fact that you respond to cortisone does indicate inflammation, and it could very well be RA. If it is, you really do need to be on the meds now.

If it were me, I'd go for the second opinion, but I wouldn't wait too long to do it. Good luck with this. The diagnosis of RA does come as a shock, but it really isn't the end of the world.

Thanks for the replies!  My husband is the one wanting a second opinion.  As much as I would rather it not be RA, my rheumie came highly recommended and the more I have read over the past two weeks, the more I am coming to trust her diagnosis (my regular dr. suspected RA and recommended I see the rd).  I have two boys, ages 7 and 9.  They are very athletic and we have always been a pretty active family.  I will do whatever it takes to fight off the progression of this disease for as long as I can. 

As far as the symmetrical nature of this thing, I am trying to think if both feet hurt the same.  I usually just wrote off any pain to a prior activity or exercise or uncomfortable shoes.  When my toe moved off to the side, at first I thought I had jammed it somehow and I tried to pop it back out.  Ouch!  Then I decided to ask my dr. about it.  The corresponding toe on the other foot had just started to move over a tiny bit, but still is sort of where it should be.  Wow, I hope that's not TMI!!!

I wasn't aware that I had swelling, but the rd was able to feel the joints and said that she could feel excess fluid in my foot. 

Anyway, I really appreciate the help and support.  I am very scared right now.  Not as much about what I'm facing down the road, but more about putting my family through what I'm facing down the road. (I really love those boys!)  I will start the MTX at the end of April (and Folic Acid, too!) and I am trading out jogging for yoga in hopes that I can build strength and flexibilty for the long road ahead.  I have also been advised by a neighbor to add fish oil to my diet. (Does anyone know if this helps?)  Thanks again!

Dear momto2boys, I can understand your fear, but anxiety, worry, stress, all that adds up to just adding to this 'stuff', If your shoes feel tight and your feet hot you probably have swelling. You are getting early help, so it doesn't seem yu need worry about long range problems concerning your 7 & 9 year olds. There are so many drugs that keep us MOVING these days. I have 3 working for me right now, prednisone, MTX & remicade. I hope to be off of the pred. soon and lessen the amount of MTX (remicade is every 8 weeks), so this is all manageable. Trust is a big part of dealing with your Dr. and you need to be 'in charge', (love husbands getting involved but the bottom line is between you and the docotr!) good luck, sarah (fish oil probably can't hurt but it gave me dia!, so stopped it ) Othrs may know better than I.

Momto2boys, I know nature not only helps but really works. Yoga is a healthy exercise it cannot repel toxics and adjust metabolic disorders.

Correct herbs and natural foods can gradually overcome chronic diseases. I am one example, who discarded meds/drugs almost 20 years ago. Only you can help yourself
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