Ok, I am on mobic, prednisone, plaquenil and starting methotrexate. Why is this MD reluctant to call it RA? He admits we are treating me as it is RA, but doesn't wnat to commit....I don't get it. Any advice please?
to be honest, I'm not really sure what the differences between inflammatory arthritis and RA - is my impression that they're more or less different words for the same things. However, if you're concerned about how your Dr. is responding, you may want to get a second opinion. If you live in an area that has a teaching hospital, try seeing someone there, as they often have more resources sometimes, more experience in diagnosis and treatment of the disease.
My rheumy said that Inflammatory arthritis is an umbrella term and RA is one of many types of auto immune disorders that fall under it. So, I will take what he says, I don't think he wants to pigeon hole things yet in case that may limit treatment or if some other disorder claims itself at some point. I am getting treated and my symptoms are getting better, so I'll trust him. Thanks, Lene, for your help. I am alos looking into the menopause/IA/RA connection. See my most recent post and please comment if you have any advice. Thanks Mo :)
I've been all for a while because of a shoulder injury and then slowly making my way through questions and posts. It may take me a while to get to yours, but I will get there.
I had initial knee pain in the left knee last June 2009. But I run 5 miles a day on the sidewalk and then on the rd which I'll explain why I added that tidbit in later. ;) The pain then w/in a month spread to the right knee, yet not as bad. Went to set up an appt to see my GP because I GOOGLED "what could be causing pain in both knees?" What I got was scary RA info. (I have to state for the record I am diagnosed w/ severe anxiety, severe panic attacks, severe OCD, IBS, Insomnia, Eating disorder, Uterine Fibroids and Kidney Stones at 35.) lol :(
So as soon as I saw RA I swear w/in a few days I brought ON my own symptoms --because it seemed like my hands and feet and wrists on both sides hurt.
My GP dismissed it, said it was not RA, it was just over using of my joints. DID not care about the rest of the body--just the knees that initially hurt. Told me one knee (the left that was the worst as far as pain) was quadricep tendonitis.
He did a test for RA and Lyme last July to ease my fears he said. They came back neg. He wouldn't do a thing. I know RA titers can change I told him. HE told me to stop over-reacting.
I went to Urgent Care in August because I still had the pain real bad 9 out of 10 and it started in my knees shot down to the feet and then arms and shot down to the hands. Was also in my neck and upper back.
That dr said I know you are anxious, so I will run a Parvo Virus, a CCP (I believe) an ANA, and a sed rate and a Vitamin D.
Called 2 days later, said the ana came back slightly elevated speckled pattern but everything else was normal, including my physical presentation. He showed 4 internists -they thought it was Fibromyalgia.
He told my GP to send a referral to a Rheumy though due to the ANA being positive.
The GP did do a referral to a Rheumy, but also wanted me to see an Orthopedic Surgeon. Ortho took x-rays...and an MRI..said it was NOT RA. He thought it could be Fibro too.
Went to the 1st Rheumy in Aug. 2009-- he checked total complement 50, c3, c4, the anti-dna & many other blood tests for SLE (lupus), and did a complete urinalysis. All came back neg. He said during presentation, I had many hypermobile joints. Take Naproxen. It was not Lupus even if blood came back pos. for it he said?--which made me wonder where his head was at...but he said blood tests don't always mean you have lupus or RA.
Although I can put my legs around my head at 35, my fingers aren't hypermobile. So my chiropractor said get a second opinion.
I went to see another Rheumy that has been dealing w/ RA, LUPUS, Fibro, and Osteoporosis for over 40 yrs at Mass General Hospital in Boston. They are rated #6 for Rheumatology. He took at every session (or he had the hospital take about 15-20 viles each time checking for everything). The lab techs would always say "wow your dr is ruling out everything serious and then some"...which they knew was scary for me, but they said it was great he was doing them all.
HE was looking for many autoimmune diseases...even did a d-dimer stat to check clotting, but during physical presentation he said I did NOT have any auto-immune disease thus far, he too said you can have a pos ANA w/ Fibro because ANA can change just like any other blood work can from month to month. If you are on certain antibiotics it can be elevated - if you were battling a virus it could be as well. I was also gaining weight-which was odd. He did check my thyroid. Keep in mind I have an eating disorder. ;) So he said that was also consistent w/ Fibro. He said I met most of the criteria for Fibro....just not all. Told me the IBS and sleeping issues, and memory fog, gave it away.
However he always was checking for AI diseases every 6-8 weeks. I did ask him if Fibro is a category they throw you in before you get an AI disease, he said NO. You can get Fibro alone, and it can be mild, to moderate to severe. He said that the fact that my pain is rated BY me as a 2 now and Naproxen at 1000 mgs a day and Codiene don't do a thing for it...also tells him it is NOT RA or Lupus. Klonopin does help.
However friends told me Fibro is just what a dr tells you when they are waiting for the AI disease to surface...so I went to another Rheumy for yet another opinion. All I told him was that last YEAR 2009 I had pain in both knees, and that when I read about it pain spread all over and on both sides. He said there was NO visible swelling, but when he palpitated 2 fingers he said he could feel something. Mind you I had no pain. And no dr could feel the swelling or see it last yr when the pain was a 9.
This was May 24th of this year now. He comes out and says it's inflammatory arthritis. I feel like I am going to throw up, and said isn't that RA? He says um, kinda.
You have Inflammatory Arthritis, Poly-Arthritis (which just means multiple joints affected) and RA. Yet all blood and x-rays show nothing. He was going by his palpitation only. I was told IA could turn into RA and is still auto-immune because it's inflammatory. They also classify it like that I was told...or use all 3 words interchangeably because then it's easier for insurance co's to cover the more expensive drugs if you need them.
Do your NSAIDs work for you? How bad is the pain? Every dr I see says that at a lvl 2-3 pain 1000 mgs of Naproxen, and 200 mgs of Doxycycline should have taken away the pain totally...because none of them see swelling. Soooo I'm going for my next Rheumy visit on 6/14. With all the work ups from last year into this year. This will be my 4th Rheumy.
Getting pretty disgusted w/ the medical field...and at this point I have pain that is like a 2 some days only because NOW he told me I had RA...lol, I was fine since the end of last Aug. 2009. Maybe it's in my head as I said. I don't know anymore. Just really confused w/ all these drs telling me it's one thing, and then others saying it's another. I hear it's hard to diagnose these things. They all mimic each other.
Anyway, sorry for my story...lol, I think he is reluctant to CALL it RA right now- because your RA titer, sed rate, protien levels etc might be in normal range? Did he do x-rays? Not that they can even help as I have seen. I'm asking for a bone scan.
I heard that can tell dead on what you have as far as bone thinning, destruction etc.
But from what I have read, if you do NOT get the IA under control, you will get RA..which is the actual destruction of joints and joint deformity.
Hope this helps somewhat.
Yeas, that is right all my markers so far are negative, but my pain and swelling are very well controlled with prednisone. Initially the mobic did a great job reducing the inflammation, then it went crazy and the pain was unbeleivable. Then he added plaquenil and 20 mg of pred, and still not pain free until 40 mgs of prednisone. Now on methotrexate and reducing the prednisone. So far so good, but I can tell that the pain is is little worse, but waiting for the methotrexate to kick in. Saying prayers that this all works and my puffy face will go away when the prednisone is stopped before my daughters wedding in August! I just can't beleive how mush pain I was in before and have lived with for probably 3 yrs! Markers are still low, I look amazingly healthy on paper! Xray look more osteo, so I have both OA and IA. Lucky me! Hey, I'm happy to be painfree, so I'll do whatever it takes! Thanks for your story and best of luck to you!
I heard about that w/ the Pred. I do believe your face goes back to "non-swelling" ;) after you're off it; or so what I have been told.
I don't have the pain like everyone else. No swelling. They said my PIP joint had mild mild swelling index finger...that could hardly be seen on x-ray ...my middle finger too...but I use that a lot, lol, and a toe and ankle. (all right hand side) Well the toe and ankle they are talking about has had surgery on it for cysts and tumors...the swelling never went down.
They said they see some mild mild...they have to use it twice..as I guess I can't comprehend what MILD alone stands for...;) and that I probably could go 30 more years w/o this being an issue.
They think because I am so ANAL when it comes to getting answers is why I have seen what they all call "you're not a definite on Fibromyalgia and you surely aren't a def for RA or Lupus either." Evidently there are pros of being persistant. lol
They said inflammation can be caused by over-usage in those joints, humidty...etc. Who knows what to believe.
What I was told was that I do NOT need a DMARD which makes me believe that they don't know what the heck I have. lol
I am going to ask for minocycline anyway- which acts as a DMARD and I'll use Voltaren gel (an RX that bypasses the stomach) on those joints that seem to be inflammed...yet they don't hurt and there is no swelling. It's all on my right side of my body so...we'll see. They keep re-assuring me that this is so much better than OA? Really? I don't think it is..when I read people's stories...but who's to say.
I guess all the big markers RA titer (even though I know that can change) or you can be sero-neg have stayed normal for a yr.
ESR is normal, the inflammation they do see is NOT symmetrical like he thought...,
CRP is normal
CCP test normal
CBC, RBC, WBC all normal.
And like I said above as well...they did a whole LOT more blood testing for Lupus & clotting factors.
Not sure. I've been told that each dr has their opinion...not everything is clear cut in these cases. And w/ that, you have to take what they say, what you feel, and what you both agree is a good course of action. I was also told you are allowed by law to ask for x-rays every yr as opposed to every 5 they tell you...to see what's going on with you. I think I'll be doing that. lol
I know I have a kidney stone that they said I had for about 10-11 yrs...and that I will probably die with they say..as they don't think it will pass it's 2mm...h/e they do a K-U-B xray every yr to ck size changes. It hasn't.
Have fun at that wedding...and keep trying to stay pain free!!!~ :)