Still off the meds

Hey all. I have not posted in awhile.
I have been off my meds for an entire year now!
Have I felt great and RA free? No- but I really didn't feel any worse off the MTX than on for a long time. Then I thought it might be creeping back but my Rheumy- he still said he didn't see any evidence of disease- stay off the meds. This last visit he blamed it on the cold weather possibly....I still don't answer his questions properly to prove I am having RA symptoms- I wish he could feel how I feel in my body. Sorry I don't swell or I'm not stiff for more than 15 mins. in the am. I am and have always been most stiff in the evenings. Tonight I am stiff and the pain was great enough to take NSAIDS and spray down my shoulders, knees and ankles with icy hot spray. Hands, wrists and feet also hurt but the other joints were "louder"
I did make him run blood tests on me after the last visit because I told him I was afraid maybe I was doing silent damage to myself. Oh he was happy to report they all came back perfect.
Problem is I have always been sero-negative. Only my inflammation markers were sky high during my very severe onset. He says I was the worst case he's seen present and have made the best comeback he has ever seen.
Does anyone know of someone who got to go off MTX and stayed in remission?
I mean he calls this remission. Not for nothing- yes I am high functioning but I have never felt completely pain and fatigue free since my RA dx. I have never called this remission in my mind.
So emotionally this depresses me. I feel like no one believes I have RA because to them I am off medication and like I said high functioning. I think I push myself because that is my nature so I give people false readings.
Any comments?

Hi Weary, My bloods are also perfect, I am also sero negative but I am stuck on enough meds to sink a ship. My rheumy goes totally on symptoms, if I say I'm sore she listens. If I say I'm not feeling right she listens.

She lets me move my prednisone dose from 5-15mg as needed. Ideally I'd like to come off all meds but it's just not going to happen for me.

Your rheumy sounds wierd to me, if you feel stiff and sore you need something in my way of thinking. We have all read the stories of untreated or even under treated cases where people end up with permanent damage.

My rheumy says the current thinking is to go in "all guns blazing" so to speak. Having said all that, I am still stiff and sore despite all the meds. I don't know if its possible to be symptom free anymore. I still try to live each day as it comes. My feet just seem to be on a down hill path, but I am better than last year. My knees are good, I can walk down stairs again. This must be due to the humira she put me back onto.

If I was you I'd be tempted to get another opinion.

I know with sero neg people we can swell along tendon paths which aren't as easy to treat or to detect. You could be one of these people.

Even when I had a massive flare in 2010, my bloods were normal! I was so ill I couldn't believe my blood could stay so normal.

Hope some of this helps.

Hope you had a good break over the silly season. I've been away and am only now trying to get back into normal routines.

Best wishes weary, you're not alone, golitho

Thanks all for your support and kind words.
I just don't know what to think- I have a high threshold for pain so I witness other people in my life make a big deal about pains and I would like to believe they are not being big babies about pain that I would call discomfort but I don't know because I'm not in their bodies. Like I'm sitting here in my chair and when I reach for my glass of club soda the range of motion I need to use makes my shoulder hurt. I am quiet but I think there are others who would say- oh ouch that hurt!
I had such severe pain at onset that all pain pales in comparison. I was such an invalid, unable to even put a pill in my mouth by myself- I am like a walking miracle. I think this is one of the reasons I am at odds with my RD. He is amazed at my comeback and feels quite the hero getting me here. He saw me at my worst and now any pain I describe pales in comparison. He sees no swelling like I had, I don't request pain meds, my blood work perfect.

It has always been the "background" pain that has annoyed me. It's just always there, it doesn't stop me from what I'm doing but it wears me thin. I've adapted to it- but is it good for your body to be in a constant fight against pain? Sometimes the background pain gets louder like it has been for the past couple of months.

I don't know if I explain myself properly to my RD. I tend to feel my best during our visits. :( Just like when you take your car in for repair because it has been making a noise only once you get there it has stopped. He is so happy to see me functional he gets me into conversations where I say yeah- it's great isn't it?

Maybe I do need a new dr.
I do love being off meds though.
RA has always made me feel like I'm crazy.

Hi Weary,

it sounds to me that you saw your rheumy first while having a massive flare. Now the flare is under control but the disease isn't.

Like Bstrong I have also been completely pain free on meds, had a 5 month period without any pain at all.

As I said now I have background pain all the time, like noise that can raise itself up to be heard and I knock it back down with panadeine forte tablets or if its getting really bad then up my prednisone. Most of the time I put up with it. But if I was you I'd be on something. If you don't want to try meds,

have you tried alternatives like vit D, fish oil, glucosamine, chondriton etc?

They all helped me initially, took the edge off the daily aches and pains. I don't seem to notice any difference now unforturnately but it may be worth a try.

Otherwise I'd be trying out an alternate rheumy, get another opinion, it can't hurt.

Its your quality of life that's important, get the most out of now, you don't want to wait until you flare again. When I was in hospital last time, one of the doctors told me that sero negative arthritis is one of the hardest to treat as it often has bizarre symptoms. There must be rheumy's out there that will treat you.

Anyway, we are with you what ever you decide, golitho

Weary, 51 is young, now 81 I'd say what do you expect but 51, you should be out there running marathons. Well slight exaggeration but hey, I'm 51, I still feel young. I'm majorly annoyed at this disease right now.
I think start of a new year should be a positive time.
We need to reclaim our lives. I'm sick of pacing myself, what does that mean anyway?
Must away, too long on the computer and I won't be able to get my feet moving at all. I joke but sometimes thats what it feels like-oh for pain free days.
Thinking of you, golitho

I guess that RA is devilish because you can't see the joint damage it's doing, maybe
it is time for you to seek out another doctor, you should be getting yearly mri or
scans to make sure the damage is not being done...so far from 2010 to 2011 I've
not had any new damage in my hands...pain I guess is very subjective to each person
and that we can get tolerant to it right before we get a big wammy hit...Good luck in this New Year and
I wish you get low pain levels for a long time...Hope you don't mind me posting....I'm off
the MTX for now until the doctor (my endocrinologists and RA Doctor) can determine
if the MTX was damaging my ovaries...I think it's just me starting peri menopause
I'm 46...but sorry got off track, well wishes to you and do get another doctor's opinion
even if it's just for peace of mind....keep us posted, okay...

So sorry to hear you are having trouble. Inflammation diseases vary so much that it is amazing that any doctor can say we have this or that. One person will have inflammation numbers through the roof and be fine (in a sense) and another will have zero as their number and feel like they were kicked by a mule.

I haven't known too many remission people. This isn't because it doesn't happen, but most people who do get better don't visit the forums often as they are back to their, close to normal, every day lives.

For me, none of the normal stuff works, I am one of the few with a rare type of RA. The people I have known with close to remissions had to be on methotrexate and biological medications like hemura or enbral.

Have you been checked for fibromyalgia? Your symptoms could also be this with the stiffness and pain. I have fibro along with my RA, it is a pain in my butt to be honest. I have to watch my rare RA for certain symptoms so i can cram other meds or vitamins with it and it makes it hard because some problems could be my fibro.

Do you ever have problems breathing in perfumes, exhaust from cars, cleaners etc. to where you feel a bit ill after? Do you find you feel a bit worse after being around these or in a newly painted area or a new home? The chemicals can trigger fibro problems as much as smells can.

For me, I am still in a horrible way, but by staying out of new places with new paint finish or new walls, not cleaning with certain chemicals, not using perfume or smelly deoderant, not eating any artificial sugars and staying away from my 100% enemy sorbitol, I am doable. It took a while to find most of my triggers.

Also, finding pain killers that help might be a good thing. Some can do ok with ultram, might be something to ask your doc.

I do hope everything works out, these diseases are just horrible.

God bless.

I am seronegative for RA, have been for over 35years., I also have SLE. I began Enbrell last Jan and for the first time since 1979 I am off Prednisone :) I do have some fibermyaliga, which as you all well know sucks. I've been having serious neck pain for months, last Feb. I had ESI and a occipital nerve block which helped for a while. I had another nerve block last week, but it's relief lasted 3 days. My RA dr said I have occipital neuralgia. If anyone has had any luck with long term relief I would love to hear about it.