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Hello all!

 
I'm a newbie wanting to introduce myself. I was dx'd in August "07 with seroneg RA. Bloodwork didn't show RA but I did have a high ACE number (an inflammation marker I was told). I don't really have much swelling but lots of pain. It started after I had gum surgery and I thought I had the flu. Low grade fever, joint pain, fatigue ... you all know what that's like. My hands were especially painful. Weird thing is my RD hasn't done any Xrays even after several visits. She started me on the normal drug routine- first Naproxyn, then Plaquenil, Celebrex and MTX. She had me on Lyrica and Tramadol for pain. She just recently took me off the Lyrica and switched me to high dosage Neurotin taken at night. Her theory is that I am not sleeping well at night so if I can get a good nights rest I will not have pain during the day. So far it hasn't worked and I still have pain all day. I'm still not sleeping well and have the afternoon fatigue that we all experience. Actually I wake up exhausted and it just gets worse as the day progresses. I really haven't experienced any improvement in how I feel, in fact I seem to be getting worse. More and more joints seem to be involved than when I was originally dx'd and I am losing some range of motion in certain areas.  
 
My question is shouldn't I have xrays done by now? How will I know if there is any joint damage without them. There's a part of me that thinks that maybe I don't have RA and that is why I'm not seeing any improvement from all the drugs. Or maybe that's just wishful thinking on my part. (or denial!) I know that it takes awhile to get the meds right but I'm having a difficult time understanding what path my RD is on. Has any experienced improvement when their sleep was improved?
 
Sorry for the long post. I really want to thank you all for this forum. You have all been a tremendous help to me. I figured it was time for me to finally "come" out and introduce myself. 
 
Laura
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Seroneg - 44 yrs old
Celebrex,Plaquenil,MTX, Neurotin and Tramadol
Hi Winddancer (love the name btw)., RA is a weird disease and takes a while to figure the right combo of meds.  When do you go back to rd? As for the xrays, maybe doc can tell by feeling and looking at you that there isn't swelling or nodules????? It does take months to figure out if the meds are working. Keep a journal everyday and write what is hurting, swolling or inmobile. Take that to next appt. I have had ra for almost 3 years and still have trouble sleeping and nap during the day. That's the worst for me because I used to have so much energy.
I wish you well soon and write often, lots of people here care and will be more helpful than me. LOL
take care
Hi Laura. Welcome to the board.  Yes, i do think you should have xrays done by now, if only so they'll have a baseline (is that what they call it?), you know, something to compare future xrays to.
 
These medications very often take a long time to work.  How long have you been on mtx?  Has your Rd been adjusting the dose?  Are you taking the plaq along with it? 
 
When do you see your RD again?  Make a list of your q's so you'll remember what you want to ask.  It's so easy to forget when you're there.  And you can always get a second opinion.  Maybe you should, just so that you'll have some peace of mind.
 
Anyway, I'm glad you found us here.  You will find that their are many people who know way more than I do, so keep checking back.   And please feel free to ask as many questions as you want.  We were all new to RA at ne point.  This board has been invaluable to me.  Hope it's the same for you too.

Linncn- I've been taking the MTX (7.5mg weekly) along with the Celebrex and Plaquenil(daily). She hasn't changed the MTX dosage since she started me on it in Oct "07. I've see the RD again in two months. I have been thinking about getting a second opinion it's just so hard to get in to see a RD these days.

Another thing the RD told me is that you can't have RA in the neck area. I have a lot of pain at the base of my skull and some days can't move my neck at all. It doesn't feel like the muscle pain I get from stress sometimes - this is completely different. Do you know if it is true that you can't have RA in the neck?


Thanks again for your replies.

 
Just wanted to say welcome and good luck getting your meds straightened out.

hi newbie,

I am new to the board too. diagnosed in february with seroneg RA.  I have done a lot of research and it is my understanding that yes you can get RA in the neck and it is serious but it is a rare joint to be involved.  Usually it is in the vertebrae at the base of the skull from what I have read.  You need to mention it to your rheumy because I read that in very rare cases the damage to the vertebrae can cause it to slip and compress the spinal cord which may result in paralysis.  Some people have ended up quadraplegic from it.  ITS SUPER RARE Though so dont freak out.  Just mention it to the doc and have him evaluate.  Its nice to meet you.  Good luck with everything and take care.

 

Welcome Laura  - While it's true that the meds can take awhile to start working, it seems odd that she wouldn't have increased the mtx yet if you've been taking it since October and you're having increased joint involvement and pain.   I also agree that a baseline of xrays would be of benefit.  If you're comfortable with your RD and satisfied with your care, mention your concerns at your next visit.  If you're questioning your treatment and follow-up, then it may be worthwhile to have a 2nd opinion.     You'll be with your RD for quite awhile, so you need to see someone you trust is doing the right thing for you.

Take care
Cathy
Welcome Laura!
 
When my RA first started, I didn't notice any swelling either, although my RD could feel it.  I also never had any baseline x-rays of the hands.  That's always concerned me a little - only a little.  I guess if I felt my treatment was lacking, it might worry me more.  But, I have a great RD who treats me and not my labs.
 
I was on 7.5 mg of MTX for 3 months and when I didn't have any response to the low dose, my RD wanted to try something else.  I did increase to 15 mg, but it was because "I" wanted to try it, so my RD agreed.

KB~ what about the plaquenil?  Did you start that at the same time you started the mtx?  If no, how long before/after?   Also, how long can it take to start working?

Welcome Winddancer and Eliseo.  Winddancer, you're on a really low dose of MTX and I'm surprised it hasn't been increased since it wasn't helping at all.  For some people, like me, it took about several months (I think, about seven, but I'm a bit foggy today) before I felt better and that was on MTX and Plaq. at 20 mg.  Most doctors treat aggressively right after diagnosis to prevent damage.  I'm wondering why she started with only pain killers if she's sure you have RA.   Maybe you should get a second opinion, since there are a couple of things that may need some "tweaking" in your health care routine.  Good luck and please, both of you, keep us posted on how you're doing.

Hi Winddancer -

I'm voting for kicking the RD to the curb - but these guys are all nicer than I am and only suggest a second opinion.  LOL

Yes, you need base line X-rays.

Yes, you should keep a journal.

How soon after your gum surgery did this come on?  Mine was 2 - 3 weeks tops.  IMHO that makes you infection driven.  You might do so research on your own on dental work and 'autoimmune diseases'.  You will get a nasty surprise - there is a definite link. 

Also, check out www.roadback.org for treating AI diseases with antibiotics. 

Hugs,

Pip

Pip-I've been curious about AP as I've done some reading about it. The RA symptoms started about 2 weeks after the gum surgery. Prior to that, I've had multiple miscarriages and frozen shoulder. When I was a kid I had mycoplasmic pneumonia (very rare in kids according to my mom) twice. I think I'll probably give regular meds a couple more months and then look more actively into AP. Intuitively I keep thinking AP may be the right answer for me, then I switch my thinking because RA runs in our family. This whole thing is so confusing.

As far as my current RD I know that she is considered the best in the area. I actually really like her personally. Perhaps she just doesn't feel like xrays are necessary at this time. She does see swelling when I don't so maybe I should have more faith in her expertise. I do think that a second opinion is never a bad thing.

Thanks again for all the info and welcomes.

They said mycoplasmic pneumonia?  WOW.  I don't think the gene thing is all that.  The incidence in identical twins is something like 15% and 8% for sibs - so, to me that screams something more 'environmental'.  Start researching now so you know what your options are at your next appointment.  GoGo just brought up the AP thread and www.roadback.org is a wealth of knowledge and info (even tho when you first get there you think "Greek!  They're speaking Greek!"  LOL

All I know is that dental work was my trigger.  If I only knew than what I know now....

Hugs,

Pip

Edited to fix the link.
Pip!2008-03-07 15:52:47[QUOTE=Linncn]

KB~ what about the plaquenil?  Did you start that at the same time you started the mtx?  If no, how long before/after?   Also, how long can it take to start working?

[/QUOTE]
I started on Plaquenil in 2004 when I was first diagnosed.  It took about 3 full months to be effective and worked great for about two years.  The only other thing I was on during that time was an NSAID.  Of course, I also took short "burst  and taper" of prednisone a couple of times too. 
 
I didn't start the MTX until last year.  I think it was in July.
Thanks Pip. I saw the thread so I'll do some reading. If I have any questions, I'll be sure to let you know.
 
I agree with you- the gum surgery wasn't worth the aftermath. I'll never do it again!! LOL
Next dental work...check out a biologic dentist.  I'm going to need more work done and NO WAY am I letting a non-biologic dentist TOUCH me.  I even went so far as to have my amalgams removed because of the research I'd seen.  I can't say it helped...but...I am doing better.  Probably the antibiotics tho.
 
Hugs,
 
Pip

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