CLINICAL REMISSION | Arthritis Information

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I thought it would be interesting to see how many individuals had achieved clinical remission (CR), how it was achieved (medications), how long it took to achieve, how long have you been in CR, what can you do now that you couldn't do before, and what advice do you have for newbies.

 
1.  Humira, MXT, Sulfasalazine
 
2.  Almost 11 years
 
3.  7 months
 
4.  I do everything I did before, golf, hike, walk for miles, some exercise - limited range of motion due to damage.
 
5.  Be patient and continue searching for CR.  Don't be afraid to try the drugs and/or change to other drugs.
That is wonderful to hear that you are in clinical remission, LinB! I am even more happy to hear that you are able to do a lot of what you use to be able to do before RA.
 
I hope it lasts for a LONG time!
Hi LinB. I am surprised there aren't more responses to this post. I think, though, when you are in remission you tend to spend less time on the boards.
 
1.  Minocycline, Plaquenil (celebrex at first; none needed now)
2.  About 1 year -- I caught this early 
3.  about 6 months -- I have felt pretty normal since early spring
 4.  I do everything I did before: bike, yoga, dance, housework - my range of motion and strength have not completely built back up, but that takes time. I should have very little permanent damage
 5.  Be patient is not my advice; my advice is to be aggressive -- seek out answers and find someone who will help you. You need to be your own advocate. You should not have to suffer.
 
Bonnie
What is considered clinical remission?  Is it no further damage?  No pain?  
Phats
  • morning stiffness less than or equal to 15 minutes
  • no fatigue
  • no joint pain
  • no joint tenderness or pain on motion
  • no soft tissue swelling in joints or tendon sheaths
  • erythrocyte sedimentation rate -(a blood test which measures inflammation) less than or equal to 30 in females and 20 in males RF, CRP all negative.
  • Also, no fluid on MRI

    • Other members may have a couple of more.  This is my RD's criteria for remission which I think is the Arthritis Foundation's criteria. 

    I still say that you need to have patience when you have been diagnosed with rheumatoid arthritis.  Nothing is going to work overnight or even next week.  Some people are very impatient and expect instant results and it's not going to happen for most individuals unless you start treatment very early in the disease process. 

    Many people have been left undiagnosed, misdiagnosed, stopped and started treatment, gone into denial, and/or just unresponsive to treatment.   If one is on the start dose of 12 mg. of MXT for several months with no response then you have to work up to the max dose and it may take longer than 3 months to reach max.  Then you go on to the next drug and start all over again.  I've been through 4 dmards and 3 biologics until I found the combination that would work.  Believe me when I say this didn't happen overnight or because I didn't have an aggressive RD or wasn't my own advocate.   I went about it very aggressively but systematically.    Everyone responds differently to the meds and some people can be aggressive and others can't due to how they react. 
     
    I reached CR by working backwards and going back on Humira but with a higher dosage of MXT than I was on before.  I've now been able to wean  from 20 mg. of MXT to 15 mg. and will be going down to 12.5 mg later in the month.  I stopped Humira and MXT several years ago and went on to Remicade which failed.  I should have been more patient and not so frightened of MXT and increased it when I was on Humira before.  I might have been in CR several years ago if I hadn't been impatient.  Lindy       
    Well that is worth waiting for. I am thrilled you can do these things. I hope it continues. I have SJorgren's I read that it does not ever go into remission. But i guess my RA could still go into remission. I guess it could work that way. I do not know?1. methotrexate only
     
    2. don't remember how long it took to get to cr
     
    3.about 12 years (those were good years)
     
    4. basically lived life like I didn't have RA anymore until a flare in 2001
     
    5. if you have a good doc, keep them and don't be afraid to ask questions and be involved in your treatment.  It's your body and you have every right to question what the docs want you to put into it.
     
    I'm starting to believe CR is a unicorn nowadays though since I've been in a massive flare for several months now with no luck at all with meds.  Humira has put me in the hospital twice since june so I don't think it's the drug for me.  First round was for a major sinus infection, now it's been shingles and cellulitis, plus a nice cold which has blossomed into a sinus infection.  YAY life is fun!
     
    Bob H
     
     
    Bob, you have had some real serious health issues with the biologics.  Like I said some can take them and some can't and there's no way of knowing unless you try them.  I've had a couple of sinus infections but that's nothing new and neither of them were as serious as yours.  I sure hope you're on your way to mending and can wean off the high Pred. soon.  LindyI didn't reply to this thread the first time I read it because I didn't think it applied to me.  You guys have to decide if it does or doesn't.
     
    1)  Minocin, Zithromax and Probiotics
    2)  4 months
    3)  Since Christmas 2006
    4)  Everything and am now working on the things I always put off learning for 'later'.  I've
             learned that life is short and to 'sieze the day'.  IE - ice skating and boogie boarding
             and just met a guy who's going to teach me to surf.  He says it doesn't matter what
             I look like in my bathing suit.  LOL
    5)  Believe in yourself and your innate sense of what your body needs to heal.  Learn and
             study your backside off.  Never, ever give up.
     
    Lindy - according to the criteria you posted, I've been in CR since 12/06.  But according to my AP doc, I'm nowhere near remission.  My RF is still stuck at over 300 points and my strep titres have begun falling again.  All my other labs have returned to normal including my ESR and CCP.  He says I won't be in remission until my labs return to normal.  I have no idea what he does for seronegative people.
     
    Pip
     
    Pip, go back and read the criteria for sed rate.  It says RF and CRP all normal.   If you're RF is elevated significantly then you're not in remission.  You can have a slightly elevated RF without having RA but yours isn't a slight elevation.  I'm assuming you don't have any damage from the last several years.  I think I remember you saying that you had none.  You're doing really great.
     
    If your RF is over 300 then why are you diagnosed as seronegative? 
     
    Lindy 
      
    1. Minocin 200mg MWF, MTX 7.5mg/week, Hydroxychloroquine 400mg a day, probiotics, probiotics, probiotics (have been lax on the fish oil for about 4 months)

    2. About 1 year

    3. By the posted criteria, about 1 year

    4. A doctor has come to see one of his patients in a hospital. The patient has had major surgery to both of his hands.

    "Doctor," says the man excitedly and dramatically holds up his heavily bandaged hands. "Will I be able to play the piano when these bandages come off?"

    "I don't see why not," replies the doctor.

    "That's funny," says the man. "I wasn't able to play it before."

    I can do pretty much anything I could do before RA, except not get enough sleep, endure too much stress, and do high impact sports, which I probably wouldn't have been healthy enough to do before RA and I always hated, anyway.

    5. Don't expect your medical team to do all the work for you---research, research, research. Keep an open mind to "alternative" therapies. Don't dismiss the mind/body connection. What you believe will heal you is probably the thing that will. Be really nice to yourself. Enjoy your life.

    My bad, Lindy, sorry.  I read the part about morning stiffness etc and saw the CPR and ESR but totally missed the RF.  Duh! 

    My RF is half of what it was - I was diagnosed 'early onset severe' with an RF of 706. 

    And I have minimal damage on one toe that is kind of doing a Vulcan greeting.  I think it looks horrible but, overall, not much to kvetch about. 

    I meant, while I have positive labs the AP doc is studying for him to include me in his definition of remission, I have no idea what he does for the seronegative people.  I think my really elevated labs are why it only took 2+ years to be diagnosed.  But, as we've seen here, there are a ton of people that are seronegative and can't get diagnosed.  So, since AP docs are vampires constantly pulling labs, how would an AP doc define remission for seronegative people?  Is this making more sense?

    Hugs,
     
    Pip
    Hi Pip, Can you be considered seronegative with an RF of 706.  Maybe I don't understand the definition of seronegative.  Please explain, I confused  Seems like with such a high RF then your diagnosis would be rheumatoid arthritis, forget the seronegative, you're positive lady. 
     
    Also, what remission criteria does an AP doctor use?  There must be a set of criteria that's used, probably about the same as the above criteria I would think.  Can't be that much difference between all of us except for our choice of drugs.  We all hurt, swell, have synovial fluid, damage, brain fog, etc.  Lindy  
    1. Minocin
    2. 2 long years
    3.  almost two years
    4. Everything!  Living in Korea is hard.  There are steps everywhere and a lot of business is done squatting (including the toilets) so I am so grateful!
    5. Never let a doctor tell you, "live with it."  If I had, I'm not sure I would be where I am today. 
     
     
    Becky in Suwon, South Korea

    The only biologic I've had this trouble with is Humira so far.  I've been on Kineret which worked for a while but then sort of fizzled out.  Enbrel for 2 1/2 years until I started forgetting to take it on a regular basis and it of course stopped being as effective.  Then remicade, which was only the minimum dose and didn't do squat.  Then I went back to my old RD and we decided to try Humira for the sake of my wallet and for the convenience of being able to do it at home. 

    I think when I go back to see the doc I'm going to beg for Enbrel again.  The WORST thing that even happened on it was that I got one or two sinus infections a year.  Not a big deal to me at all and a very acceptable trade off. 
     
    The bad thing is that until I can get cleared to take my mtx and maybe get back to the enbrel, the 70mg of pred is all that is holding back a HUGE flare.  Granted, I can feel the stiffness and some swelling coming back, it's not as bad with the 'roids.  I've gotten lucky and caught this respiratory bug that is going around now and from what everyone is saying it's a long lived little sucker as a friend of mine who is in great health normally has had it three weeks now!  I'm going on 2 with it and it stinks!  The great news is that the shingles are history as the very last scab fell off today...yay!  I still have some tenderness in my face from the cellulitis but have been told that this may last for quite a while and that if it's not red, and if I have no fever then I'm ok with some tenderness in the area.  Plus a CT scan about a week ago said it had shrunken down more since day 2 in the hospital so that is good too.
     
    Sorry about going off topic but I didn't want to start a new thread for this.
    Bob H.
    I was in remission for a couple of years, taking nothing more than fish oil (10 capsules - 3 grams/day of omega-3's) and maintaining a decent diet (not weight-loss, just good nutrition).  I had occasional aches and pains, but honestly, what 34-year old doesn't - especially with two small kids and a strenuous exercise regimen (free weights, running, swimming)?  The only real problems I had during that time were due to stupid human tricks (I'm clumsy), so I had a few medrol dosepaks and naproxen to deal with back strain (moving furniture), shoulder strain (again moving furniture) and sciatica (remnant of pregnancy).  I stopped taking fish oil and ate whatever the hell I wanted.  A month later I had the mother of all flares, and went groveling to the rheumatologist.  A medrol dosepak, high dose naproxen (with prevacid) and vicodin quickly got it under control.  I started taking fish oil and watching the diet again, but the inflammation would not completely clear so we added in plaquenil.  I just went back for my semi-annual visit, and everything looks great.  I do not have pain or stiffness in the morning; I rarely have bouts of fatigue, and when I do, it's because I overdid it (I've pulled a few all-nighters working on various projects).  I have some aches and pains, but they're mostly from old injuries which are not RA-related.  I turn 40 soon; I don't know any 40-year old, healthy or not, who does not have occasional aches and pains, or days when they're exhausted.
    JasmineRain2008-10-03 07:13:20

    For those of you that take fish oil...how long before you started to notice any change?  I just started taking about 2.4g per day.  (2-1,200mg geltabs a day)

    [QUOTE=bob_h76]

    For those of you that take fish oil...how long before you started to notice any change?  I just started taking about 2.4g per day.  (2-1,200mg geltabs a day)

    [/QUOTE]

    About 4-6 weeks for me.  Also, I just edited my post to clarify how much fish oil I take.  Depending on the size of the capsule, I generally take 10 per day, for a total omega-3 intake of 3 grams/day.  My original post was a bit misleading - I wrote that I take 3 grams/day of fish oil (which would only be about a gram of omega-3 per day).  Most studies involving omega-3's haven't shown much RA benefit for daily intakes under 3 g/day (generally 10g/day fish oil capsules).
    Lindy -
     
    I'm strongly seropositive and have been from well before diagnosis.  Even my CCP went positive prior to AP.  Now, everything else is normal except the RF.
     
    My original diagnosis was RA, switched to Palindromic because of some 'unusual' aspects of how I presented, then back to RA (assuming because of the CCP) then finally back to Palindromic as my disease reversed on AP.  I never count the first diagnosis because we didn't believe/agree with it.  We did agree with the Palindromic.  LOL  I had to agree with the 2nd RA as it feels different than PRA. 
     
    See - that was what I was trying to say - "what does an AP doc use for CR for seronegative people?"  For us positives, they are constantly pulling blood work.  Tubes and tubes every visit looking at pages and pages of print outs from mineral panels to you name it.  There must be other stuff they're looking for besides the ACR list. 
     
    I will ask at my next visit.
     
    Lindy - can you 'feel' the RA?  Like underground even tho you are in CR?  I can but I'm not in CR.  I'm more like Jas in that it feels like what I'd expect as normal aging.  Only sometimes, when I herx, (most times I can't even notice it now) I can feel a teeny tiny twinge starting about an hour after my Mino dose.  It lasts about a half hour to an hour if I'm going to feel anything at all.  If I wasn't PRA/RA/PRA I wouldn't know it for what it is - a herx - I'd think it was 'normal'. 
     
    Pip
     
    Edited to say - my morning stiffness lasts about 1 minute now.  I was never stiff in the morning while PRA; only I'd get worse at night.  So, I have no idea what this means.
    Pip!2008-10-03 07:54:10Becky!
     
    I was wondering about you!  Glad to see you're still with us!
     
    Pip
    I'm still here but living in South Korea is still a little more complicated than home.  I really miss my dryer the most!  Cooking is also more difficult.  I wasn't the best cook to begin with and living in a country where American ingredients are few is still a challenge. 
     
    I did find someone who's husband works on a U.S. base here and she is going to buy me some things.  WooHoo!
     
    I'm craving Chipotle's which will have to wait until our visit in December.
     
    I just finished a book too which will be out August 2009.
     
    Becky
    Becky, tell us about your book, please.
     
    Pip, no I don't feel the RA pain just the PsA.  Yes, it's a different kind of pain.  Sometimes I have pain but I also have OA in fingers, along with RA and PsA, and damage.  So for me pain is pain.  I do have knee pain and that's from OA and PsA affects my collateral and Achilles ligaments, toes, and last joint of my fingers. 
     
    Thanks for the explanation about sero and RA and factor.  I started this whole process 23 years ago and was seronegative.  No one, not even the university hospitals would start treatment in a seronegative.  I had to wait for treatment until I had an acute onset of RA with an RF of over 1,000 eleven years ago.  This is why it's so important for seronegatives to fight for treatment.   Lindy 
    Lindy -
     
    You are one of the only people I've 'met' that knows about the different pains.  There was one guy on here about 6 months ago that was originally PRA and went on to RA and he knew about it.  So, amen on the seronegatives - how many times have we seen here on AI people dealing with RA but the docs don't do anything without that little lab slip in their hands?
     
    Becky - tell me about the book!  I'll buy one!
     
    Pip
    I am so glad I found this board. It has made me think of so many questions to ask my dr. I think I am sort of like a deer in the head lights when it comes to going to see the dr. I forget what i want to ask and I just try to listen to what she tells me to do. This is all new to me (diag. this summer). The numbers confuse me. My Dr. gave me number of 60, but I can't remember what she said it was (might be sedrate?) and said it was high and that my RA was aggressive. When you are talking about CR, is there any other kind of remission? Also, if you are in CR, do you continue to take medication?
     
    Thanks in advance for any info. Any suggestions on questions I should ask MY RA Dr. would be appreciated.
     
    Laurie
     
    Started out with Lyme Disease which triggered RA (my mom had it and suffered terribly with major deformities), now stuck with RA after treating Lyme with Doxy for two months (pain was not managed well while trying to treat Lyme but better now).
     
    MTX (2.5x7/week), Folic Acid, (2mg a day) Enbrel (once a week )- all seem to be starting to work, slowly but surely-no totally out of pain yet

    Laurie - stick around here but I think you need to find the Lymies - if you know yours is Lyme related, it is very treatable with antibiotics.  I think the right group is www.lymenet.org.  Or search here on AI to get an idea about the Lyme wars.  2 months of doxy is not enough for a good percentage of people. 

    There is clinical remission - which is usually caused by medication.  If you stop the meds, it usually comes back bigger and badder than before.  There is a med-free remission but it's really rare - like less than 1/2 of 1% for RA. 
     
    I'm aiming for a med free remission - I don't take 'no' for an answer.
     
    Pip
    PS - you need a Lyme Literate MD - if your doc is not, then he's not going to help with the Lyme.Thanks for your reply Pip, and the link. I am stuck with the RA, it runs in my family and it how my body reacted to the Lyme. There is Lyme Arthritis which is treatable and also can go away. I am pretty much dealing with the RA now. I have an excellen Infectious Disease Dr. and that is the way to go. I live in the Hudson Valley, NY, and they are pretty good with Lyme since it is very prevalent here. I will def. check out the Lyme site.
     
    Thank you,
     
    Laurie
    Laurie -
     
    Some of here don't believe ANY RA is not an infection.  Let me ask you a question, please.  If you know you have RA caused by Lyme and there was a chance, lets say only 1%, that you could get cured, would you go for it? 
     
    All I'm begging (seriously, I'm begging here) is that you find the Lymies and lurk on their board.  Search for Lyme Literate MD's and you'll find the correct board.  The other is almost the same and the Anti-Lyme coalition. 
     
    Or, go to www.roadback.org and lurk there.  Tons of Lymies there with info.  These were people that were told their Lyme was not curable and are RA or Lupus or whatever and are healing now after years of damage.  Or even post there and ask for the Lyme people to tell you what went down and how.  There's a woman there that was literally dying with an RF of 7400 and she's got her life back. 
     
    Because, if you find them, read and learn, decide to try, and then heal, I'm willing to bet you could use that info to help the rest of your family.
     
    Again, not trying to push, but I'd have killed to have the Lyme diagnosis but I tested negative by IgeneX.  The Lyme people are the people I envy.
     
    Hugs,
     
    Pip
    I'm still working on the remission. It's been a journey. I have tried several meds I was allergic to sulfa, mtx, and humira. I was able to control some of the itching and hives and stayed on humira 8 months and it didn't do much. Plaquenil was the first med. I took for 6 months and nothing. Then I went on to try the others and was allergic. I have been taking enbrel every week for 10 months and it's helped. Especially with morning stiffness and energy but had to go off it twice because I keep getting cysts (boils). I currently have been off it for 3 weeks because of a cyst and I can sure tell. I miss it and my pain has really not been under control. Stiffness and swelling has returned. I am on 2nd round of antibiotics so hopefully in another week I can get back to the enbrel. I just had blood work and my rf was 264. When I was dx'ed it was 129. I was dx'ed with moderate to severe ra. My hands, feet, hip and shoulders bother me the most. It all started in my hands way back when I think it's been 3 years now.
    That's my story.
    Cindee - please think about probiotics - especially since you're on rounds of antibiotics.  Please? And never give up!
     
    Pip

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