Your scale is a pretty dang good day for me. When I flare, pain is 8 to 8.5, stiff is 7.5 to 9.5, number or swelled/inflamed/hot joints let me think out loud here.....14 joints in each had so at least 12 of the 28, both wrists, one or both elbows and shoulders, both heels, ankles and the underside of both feet near the toes.

Maybe that'll give you some comparison.

@nonightsh

Oh wow!!! I knew my symptoms were on the mild side but yes this definitely gives me better perspective. Sorry to hear that your flares are that extreme!

Thanks for your thoughts!

no worries, I'm good at present. Hope yours gets no worse.

A bad day for me is anywhere from 10/10 flares to 100/10 flares. Those are the kind that I literally cannot move, nothing helps the flares and I have to be fed by my husband and put in a wheelchair to be taken to the bathroom and back from my bed.

I had that last Feb. and March, and determined I am not going through it again, no matter how much prednisone I have to take! It was not fair to my husband, either.

I have also found that my RA changes how it presents, depending what drug I am on. I was very consistent the first 9 years on mthx, with Kineret the last 4 of those years. I knew what to expect.

But with every biologic, different things were flaring, different levels of energy, how bad the flares were, etc. Last year I tried Xeljanz. It was working a bit. But then my ankles just ballooned up into these giant hot messes. I had NEVER had a flare in my ankles before Xeljanz. I was really annoyed, because I was hoping to never have ankle replacements, now, the osteo will probably move in. When I stopped taking Xeljanz, the ankles went back to normal.

Plus I got Boutineer defomities in my ring fingers on both hands on Xeljanz. I'm waiting till June, then I am going to size my engagement ring. I took off my rings one night, and in the morning it was like the rings had never been on my finger. They didn't even fit my little finger! Xeljanz again.

Now I am on Orencia and Arava. I am getting really bad tendoniitis in my hands. I have never had tendoniitis before. Is this just the progression of the disease, or a reaction to Arava or Orencia? I won't know till I go off those drugs, which is not happening in the near future, according to my rheumatologist.

If you are off meds, I would be very careful about the disease getting worse. Don't be like the frog in the water, and let it gradually get worse without realizing the disease might stay worse permanently. I am sure you have your reasons for going off meds, but 5 months in remission, more or less, is not confirmation of permanent remission especially if you are starting to get stiffness and swelling again.

Having lived with RA for 4+ years....

For ME, a FLARE is ALL-OVER pain: every joint in my body: toes, ankles, knees, hips, hands, wrists, elbows, shoulders....

Some joints may be worse - for me, elbows and shoulders were the worst. 10+ But note that they are not necessarily hot, and may or may not appear swollen.

For me a flare is when I want to commit suicide from the pain because I cannot get out of bed, and it takes hours to dress and clean myself.

I have had two such flares in my life. Am on Prednisone for one right now.

Anything less, i consider "break through" pain...or a joint that might need something other than medication such as PT or even surgery.

@Marlene

Thanks Marlene for your input & I will definitely keep a keen eye on any progression. I was taken off because my symptoms were all but gone for a solid year on 2.5mg of MTX. I wasnt' even taking Folic Acid at that low of MTX. So with the okay from my Rheumy he said it was okay to do a trial run without med's to see if my body would just stick to where it was at I guess? I was fine starting in December & then around 3 weeks ago I had a few beers that I've never tried before & "BANG" very minor symptoms started to creep back.

@Warriorgal

That's an interesting take on whether or not it is or is not a flare. That's I guess what I'm trying to figure out. Are my low levels a flare or the start of it all coming back? I guess I won't know until it happens or I just cut it off at the pass by going back on meds again. MTX did very well for me, it's just my liver didn't like it much. I had elevated levels, even though only slightly @ 2.5mg. So my Rheumy was very cautious & wanted to switch me if I came back with majro symptoms.

How long does a flare typically last for you? A few days, weeks, months??? I would think a flare is very temporary like a few days or a week at longest but from what I'm reading & seeing that's not necessarily the case.

I am 7 years now with RA all joints are flared and becoming more deformed and harder to use.. I had a positive TB test after taking Embreil 2 years ago so have stayed off mere except pregnizone...m.ive been cleared of TB but am afraid to take Orencia as my doc suggest .. What do you all think?

@marsha

I'm curious how long did you wait before getting on any DMARD or have you ever been on any? 7yrs and already major deformity? I'm not too familiar with Orencia but there does seem to me precaution before going on it but then again that's probably with any biologic or DMARD

I have to agree with nonightshades. I would love to have your scale. Most days I maintain at a 4 to 5 normally. Flares cause the pain the shoot up to 9 fast with swelling to the point of not being able to move the joints.
I am on Enbrel now for about 2 months and thanking my lucky stars that I haven't had a flare since I started taking it. This does not mean that my joints don't swell but that they are at a manageable pain level of 4 to 5. I am happy with that. It is better than it has been in over a year.

@Dorothy,

But doesn't everyone start out where I am, very low levels of pain, stiffness, inflammation & it just "progresses" to a higher level ? I've only been dx'd since 2014. So maybe it stands to reason why my symptoms aren't that severe.....yet. Don't get me wrong I don't want it to get any worse & YES I'd be very happy if this is the worst it got.

I know many of you have decades with RA & unfortunately maybe when some of you were diagnosed there weren't the choices we have now so there was probably much more damage being done.

I don't know, in the end I'm just trying to gauge where I am through the course of this disease.

I was mistaken about the med's my doctor switched me to. I thought it was sulfasalazine but it's actually Arava. So we'll see.

So far Friday & today my symptoms have regressed a lot since i wrote this piece so maybe the flare is ending!

I started seeing a rheumy in 2008 because my ANA was 1:640. She kept telling me it was just osteoarthritis and would have me check back in 3 months. I told her once that osteo doesn't just show up overnight with a pain score of 8-9 when the joints were fine the day before.
After several bouts with Iritis my eye doctor suggested I needed my ANA tested again and it was 1:1280. At that point the Rheumy said it was possibly early onset Lupis with Fibromyalgia. After 6 months of this I saw my primary care doctor and she listened to me and ran CCP(?) that showed I definitely had RA.
So you can see some of us take a lot longer to get diagnosed with RA and have to fight for a decent diagnosis.
Now she doesn't want to diagnose Lupus and changed it to an undisclosed connective tissue disease, RA, and Fibro. To me it just means I hurt and some days are better than others.

Dorothy,

Wow!!!! Yes, after reading a lot of these type of stories I can surely understand why it may take longer to get diagnosed. After reading your story I sometimes wonder if I TRULY have RA or do I have something else lately.

But your last sentence kind of struck a chord with me. That's how I feel lately. Because when i was first dx'd with RA I had the classic symptoms, swollen painful joints, stiffness in the morning from my jaw all the way down to my feet. The stiffness WAS from 1-10 about a 8, the pain was still not that bad but much worse than it is now, around a 5 or 6 especially in the shoulders & ankles.

Now, I don't get the hot, swollen stiff joints just weird constantly moving what I call "pings & dings" pain. Kind of like, "Did I rack my ankle against the foot of the bed last night & forget"? I feel like for maybe 20 minutes & it goes away & then it's a middle finger (LOL), then it's gone & it's the left wrist, etc etc.

I have a new prescription of Arava & it's just sitting there. I really don't think i need to take it.....for now. I also have prednisone but I know I don't need that yet.

Oh well, I guess we'll see in another few weeks.

Hi Oceans11, thank you for asking this question and a very good one it is. And with this question you can get a variety of answers as there are people. I have been diagnosed with RA since 2004 and it has progressed quickly with one drug working for a few months to a few years then stop. My first flare hit me like a ton of bricks and I did not even know what it was. My body realized and knew I had to take something to try to relieve the pain. I would have to stop what I was doing and rest. The same thing happens now, but I have since learned that I need to stop when I feel a flare coming on before it becomes a flare and that seems to help a great deal. When a flare is in full force it affects the whole body from head to toe including my eyeballs. When flares first started in me it was further down the road of my RA course say about 4 or so years from the start of the diagnoses and the pain was 10-15/100. Sometimes now the pain is 20-30 over 100 even with a biologic, DMard and narcotic thrown in the mix. I have found that getting upset, getting angry, and undue stress can lead to a flare coming on so I avoid any argument, getting angry and the weather can cause me to have a flare come on.

Oceans I do hope you find a way to cope with or ward off flares since at this point the flares do not seem to be so traumatic for you. I wish you the best and hope you are feeling much better soon.

Christine,

Thank you so much Christine for reaching out I appreciate it! It's Memorial Day & yeah if someone were to say to me, "If this was the worst it would get ever, would you be okay with it"? And after seeing how some of the posters on here suffer it's a RESOUNDING YES! I think what I"m going through is absolutely nothing compared to others. I guess I'm just in a little limbo right now, I don't want to let the disease get to a point where I'm going to look back & say, "I should have started taking the med's as soon as I felt those little pings & dings". However we all know how toxic these meds are & I don't want to start taking them if this is a minor flare which will run it's course or not get any worse.

I don't think being dx'd at 44 is super young but I have many more years (hopefully) of life left & I don't want to regret not being aggressive NOW!

Well, I guess all I can do is be prudent with my Rheumy visits & be vigilant at monitoring my symptoms.