Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
It's been exactly 1 year ago this week that I went completely off meds. I was only taking MTX & @ 2.5mg per week the dosage was so low I didn't even need to take the folic acid to combat any nausea. So with the okay from my Rheumy I got off the meds. However, I kept going to normal every other month appointment. Just so he could examine my joints, keep notes of my progress or regression.
It took about 3-4 months before I started noticing very minor/mild twinges here & there. I know a year is not a long time, I understand that there are a few on here that have gone year(s) in "remission" without drugs & it all came roaring back! So I'm under no false pretense that I'm done with RA. I still have it. I'm writing this for any newbies that may be or may in the future go through the same thing. Just so they can see at least one version of what may happen if you get off the meds.
Fast forward to about Sept-Oct & all throughout this time I'm hitting the gym pretty routinely 2-4 times a week. When I need a break, I take it, when I feel good I go back again! (Sounded like Gump writing that)! But I did end feeling some pain in the index finger, sometimes in the wrist, but never longer than a day & never bi-laterally. So it was hard to tell if it was joint pain from RA or from working out.
I decided to get labs done just in case & have my doctor give me his opinion on what we need to do going forward. My labs came back with, ESR @ 2 normal bein below 15, RF @ 9, normal being below 14, CRP @ .13 normal being below .80 & CCP 53 which was high but normal being 45 so not that much higher. I know a lot of people on here say screw the labs it doesn't mean anything.
In the end my Rheumy said, "You're a mild case & I see no evidence of any damage, let's run some X-rays after the holidays just to make sure, but it's up to you if you want to go back on MTX or stick with the OTC for right now, you're in a decent place".
But all in all I feel okay, if I have some minor pain I take an Aleve & I'm good. I feel my pain at worst is a 2-3 on days that I actually have pain, no stiffness, no swelling, no redness.
So that's it so far for this year.
Have a wonderful & safe Holidays everyone!
On what basis were you diagnosed with RA?
Is it possible you were misdiagnosed?
There is no medical reason for spontaneous remission from RA. But, hey, if it is working, consider yourself to have dodged a big bullet. Maybe a cannon! Or a nuclear bomb! LOL
Upon my original visit to my Rheumy back in July of 2013 I had all the classic symptoms. All joints swollen, painful, redness. The one lab that popped out was the CCP that came back at >250! Where as last month it was 53! Once again I know you guys aren't big on the labs "alone" but just stating for comparison sake. So my Rheumy moved forward with the RA diagnosis. As soon as I too Prednisone I felt back to normal or at least 98%, then started on the MTX & although I had neck pain for the first month on MTX it went away with all other symptoms.
Hi MarleneJ,
I'm going to look into that Palindromic? I've only heard about it once before on this forum but never did any research on it. I'm open to thinking it could be a misdiagnosis but my mom had Rheumatic Fever as a child so Immune System diseases I guess you could say runs on my moms side of the family.
I know nothing about the palindromic version.
But I do know that some lab tests give false positive or erroroneous results.
I've just never heard of someone with RA or PsA flaring and then being in remission with only 2.5 mg MTX. Most of us take 6 to 10 times that dose just to prevent it from getting worse.
I don't know that your mother's rheumatic fever has anything to do with it.
Just be grateful you are where you are! I'm happy for you.
I just don't want newly diagnosed people to think that your experience is the norm.
Now tell me.....Which is your favorite beach?
YESS I love the holidays, for the first time in years California is actually cool(er) & we had rain, drizzle for the past few days! I mean I don't take for granted the nice weather the rest of the year but I would like some "change" every once in a while too. I guess I'm just spoiled.
I only mentioned my mothers Rheumatic Fever because it's still running under the Rheumatic chain of disease which then falls under auto immune disease doesn't it? However, I'm not sure if AI disease's are hereditary or not, I believe they are judging from other posts I've read. But maybe that's only from RA to RA?
Oh & I am grateful for sure. I just think it's human nature to want to "solve" the problem & get passed it. When I was diagnosed & was on MTX it felt like "I was in control" I took the med, I got better, I felt fine, I got on with life. Now I feel a little in between. On a scale of 1-100 I feel like an 85. Now of course YESS that's awesome & I recognize I could be a hell of a lot worse but like I said, human nature.
And yes I do understand & AGREE 100% I don't want newbies to think I'm the standard by any stretch of the imagination. And this is why I do recognize that this could all end & I could end up with full blown symptoms again, tomorrow, next week or in 10 years. And this is probably what I hate about this disease the most!
My favorite beach here in CA? I'm an OC kid so I love Newport & Laguna! I'm not a big fan of Huntington Beach but I do go to meet up with friends sometime. But I also frequent Maui & love Kapalua & Ka'anapali beach!
Nothing progressive yet. I cross my fingers that not ever! I don't know how fast damage & deformity can occur though? While I've been off the meds would it take months or years? Not sure. My Rheumy states, "Swelling & inflammation is the key". And since I'm not having any -0- of that then he doesn't feel any damage at least from a visual prospective is going on........yet.
So I went a-googling......
https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-1-palindromic-rheumatism/
So Marlene was right - it does point to palindromic.
Still, it sounds like you have a great rheumatologist who is keeping on top of it and making sure he's right there IF symptoms rear their ugly heads.
I'm very, very happy for you. What a wonderful Christmas present.
Yes I like my Rheumy a lot I have to admit he was much more attentive back when I was more on the moderate side of the disease I guess there's no reason to panic & be so vigilent while being mild but I'd hate to look back & say, "Wow had we just stayed aggressive when I was mild maybe I wouldn't be back at moderate or severe"? Hmmm??
The link you pasted is very interesting. The 48yr old female they noted had the same symptoms I first complained about. I originally had major shoulder pain so bad that I couldn't sleep & could only fall asleep with an ice pack place don my shoulder & sleeping in a sitting position so the ice pack wouldn't fall off! This went completely away after about 2 weeks & some anti inflammatories for about 6 months & came back again & that's when it went to both shoulders & started it's full progression to feet, wrists fingers etc.
So the fact that Palindromic ends up turning into full blown RA does seem to mimic what happened to me.
http://www.palindromicrheumatism.org/faq.shtml
http://www.webmd.com/drug-medication/news/20150508/most-prescribed-top-selling-drugs
I think a while back someone was certain the Strep Throat had triggered RA. So, maybe that is in the chain. My mom used to say it affected her hearing. Not sure if that is a symptom. But she said she could hear well before she had it, but not after. She is healthy as can be at 87, other than some wear and tear osteo, and age related dementia.
I did have Palindromic for about 2 years. It was very bad at first. Most of the flares lasted about 24 hours. Intense pain, but no damage. And no meds, which was the doctors' first mistake. When the flares started staying for more than a month, I knew something was really wrong. Another 2 years before I got a diagnosis of RA by symptoms. I know another woman the same thing happened, and another woman who lived near me. The second woman pmed me one day that she was leaving DS because she was over the misdiagnosed RA, with Palindromic that went away. Lucky her!
Hey! The links work in the answering posts! That is awesome!
1. Went to the east coast to visit my mother. I have a half brother 15 years younger who lives on the east coast.
2. Picked up a bad cold and strep throat, that soon turned into walking pneumonia.
3. My half brother, who was staying at our mom's home at the time, also picked up the cold and strep throat.
4. I flew back to the west coast, recovered. Within six months my limbs were killing me. Referred to rheumatologist who was able to diagnose PsA and seronegative RA.
5. When I explained the diagnosis to my mom, she mentioned that my brother had similar symptoms and had seen a rheumatologist and was waiting for test results.
And guess what? Different doctor, no knowledge of MY new diagnosis, and same diagnosis for my brother.
Back then we didn't know about strep being a catalyst or gatekeeper.