Ok so following on from a post I wrote yesterday, and apologies if I sound a little stupid but I think ive not been seeing the woods for the trees since all this started. I was saying that I was confused by the idea of a 'flare' as my symptoms started 15 months ago, gradually increased to various places around my body, and have pretty much remained constant as we havent found the right meds to get it under control yet. Hence a 'flare' made no sense to me as Ive felt Im in a continual flare. Another member wrote that they thought a 'flare' was when your everyday symptoms worsened. So if most days my pain is a 6/10 then, this would mean that when it because an 8/10 this is a 'flare'.
So now im thinking do most people have some symptoms all of the time even once those symptoms are controlled with the right meds. Kind of the meds just dampen everything down to varying degrees then when things worsen its a 'flare'? Or as I may have been mistakenly thinking...does being controlled by the meds mean no symptoms at all anymore on most days but occasional break throughs of symptoms and this is a flare??
If your head is now hurting Im truly sorry ...Im just trying to understand what having my RA controlled means and what a 'flare' is?? Anyone who got this far ... thanks and be interested in your views.
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Beelady
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You re not stupid, i have thought same thing. I have symptoms all the time tho not as bad as they were without meds; i don't know if this gets better: i hope so 😀
Hi Beelady! I'm also new to this, and lack a long experience. My guess would be that you are still in your initial flare. My symptoms started nearly two years ago and were quite mild, but it got quickly worse last October. With medication things are improving, but I'm not back to how I was during the first year of symptoms. I certainly hope that things are going to continue to improve and I will be back to the mild symptoms level I was in the first year.
But even in that first year there were some ups and down. I guess the "being worse" times were flares.
I think most of us think of having a 'flare' when symptoms are significantly worse than usual. And usual varies from person to person, but the aim is to have a more less normal life with little constant pain and stiffness.
Until you get to a place where things improve/stabilise your RA is just uncontrolled....some day wilder than others, but always pretty bad.
Once you get a bit more controlled, then things should stabilise. If you are lucky they will stabilise at a 1 out of 10 pain level, but some people find they have to settle for 3 out of 10 or so. I'm hugely lucky and for most of last 5 years have been in a drug controlled remission so always 1 or 2 out of 10 pain levels, but often at a level that meant I didn't think about it at all. Over the last 18 months I have had more flares where pain levels go totally haywire.
But to me you have to get to a point of some control before you can really describe bad times as having a flare.
So how do you get out of a flare when you are on meds controlling it? I am new to autoimmune illness and very much NOT controlled going on 9 months now. Just curious what this actually will be like one I have a "flare." Right now I am still 8/10 to 10/10 daily with some 5/10 days here and there.
Stm252 Usually they put me on a prednisone taper when things get too ugly. I'm still not controlled either. I sometimes do a lot of back to back prednisone tapers. Diagnosed last summer. I'm still trial and error'ing on the medications.
I hear you ❤️ do you feel the rheumatologist is listening to you? Is he going to try another DMARD? Prednisone is such a double edge sword! I'm off again, for now, but feel awful.
Yes the rheum is on it. Granted this is the fourth rheum I have seen! But finally someone paying attention. He wants me off but gets the bigger picture and has been adding in other meds as a means to try to get me off!!
Prednisone is so hard. Ideally it's only a bandaid until the right DMARD takes effect. Good for you for keeping on looking for a good rheumy! Glad you found one! Hopefully they can find the right DMARD to get your RA under control.
Most times for me now five days of anti-inflammatorys will calm things down again. However if not steroids do the job. Sometimes it's just one or two joints that go nuts and I have had injections into that joint, otherwise it's a general intramuscular injection. Oral steroids make me go a bit weird....
That's actually a great question beelady! I'm relatively new to all this myself and have always wondered what remission means... As in no pain at all?? I dunno.
Had my onset in June, diagnosed by August. Was really bad back then, now I'm ok. Can function pretty normal most days. Not sure if that means I'm in remission. I've had rheumies tell me different things.
But from the sound of it... You have not had it controlled since it started so call it whatever you want... It can be long, ongoing flare!
But as Helix mentioned, once you get into a more comfortable place, you will definitely know bc you'll forget how bad things can get until they start up again.
Pred has been my best friend throughout the whole process. I know it does some crazy things to some ppl, but it's helped me a lot.
Don’t worry there are not such things as stupid questions as all questions are important!😃
For me , a flare is a sudden onset of general fatigue and pain all over the body. It feels like I am running a low grade fever and there is throbbing in some joint or other. It doesn’t have anything to do with the normal day to day pains and their severity. Usually it comes to me after I’ve been an idiot and tried to do too much in one day or over the span of a few days( thinking I’m feeling well so why not push myself) I usually end up paying for it. A flare can last for days or just one day, there really isn’t any rule and it may go away by just resting and taking an anti inflammatory pill or In more severe cases I have to get back to steroids for a week and tapper down.
Fun right?🤯🙄
In any case , everyone is at a different stage and everybody’s case is different. You should always follow your doctors advice and treatment plan and be sure to keep asking questions and reading a lot to be informed and educated about this condition. It is most unfortunate when people don’t understand what RA is or other such conditions and it serves us no good to be in dark and just following blindly.
Yesterday, I was at the doctors office . The waiting room was really crowded, and strangely filled with very young people ( in their 20’s). I found this very sad but there were others older of course. Anyways, this one lady who seemed to be in her 40’s sat next to me and started asking me questions about my condition. How long have I been sick, how long have I been following up with this particular doctor... etc. This lady has really swollen hands in the verge of disfigurement, and from out conversation I gathered she’s been treated by doctors for years and years . However, a few things stuck out for me;
1. Her questions were really basic , like she had no clue whatsoever what RA is , what is does , how it can progress, what different meds there are and their side effects....
2. She seemed to be under the impression that once the symptoms ( swelling in her hands) went down its properly expected that one should stop taking their meds naturally, and not go back to see that doc anymore coz he did the job.
3. She was upset that the doctors treatments don’t seem to work( see point 2🤯🤯🤯) and that she is in a lot of pain and discomfort.
4. She seemed to be there because she heard this doctor has a great reputation, however she didn’t understand until I told her that RA and other such diseases have no cure. She thought this guy was finally going to give her the righ meds to make this go away once and for all.
After she spoke to me, and I made a few points clear to her, I think she got depressed .
I have no idea how she managed to stay for so many years oblivious. Is it that the doctors never truly explained anything to her or they might have and she is someone who just doesn’t listen and disbelieves everyone, or does she live under a rock?...
in any case , please keep asking questions and get to know your condition and accept it and go on with confidence that you are doing everything possible. We live in a day and age that we have access to more Info than we possibly need. All questions can be answered in minutes and there are forums and support groups such as this one that really make a difference. We are very lucky and we need to take advantage of everything we have.
You’re not being stupid, I had pretty much the same thoughts when I was diagnosed in 2004. I expected that once the right cocktail of drugs was established I would be back to how I was before the whole thing started. This isn’t the case, for me anyway. I ended up on mtx and Enbrel (now Benepali, same drug as Enbrel but cheaper!) but I still have pain all day, every day, but no where as bad as I was experiencing before diagnosis. I also have flares in some joints that usually last from one day up to a week. Then the pain is much greater, and the joints are warm. I also get fatigue at that point. This is just how I am, but everybody's experience is different.
You sound like me.. Except Im not on meds.. I am to scared of all the meds.. I have been offered Humuria but than my other RA dr told me to never take Humuria due to my blood clotting issues.. Said it could kill me.. So the new RA dr wants me to go on 200mg of Planquiel but Im scared to take it due to all the side effects and loss of sight that can happen. If I only swell up a little bit on my joints and it goes away in a few days .. should I stay off the meds .. Am I not that bad like they tell me? And if Im not that bad than why are they trying to give me these horrible drugs?? Anyone please help.. Im so lost.. Thanks Boobalou
I think everyone has to decide for themselves whether it’s worth taking a risk on getting side effects from the RA meds, or not taking them and risking joint damage. For me that was never the option because I was in too much pain at the beginning and decided that the risk was necessary in order to be able to do my job, and just have a life. I do now have to take othe meds because of the side effects of these meds - for high blood pressure and acid reflux, and I now also have adrenal insufficiency because of being on steroids too long. That would be one thing I would be wary of - watch the steroids, but for me, I wouldn’t do anything differently.
I had my eyes checked the other day and Dr said that he has not seen any problems due to Planquiel in a very long time possibly due to lower doses now used and that eye problems caused from build up in eye is reversible. I've been taking for over 5 years and had no side effects
Thanks Izabella. I agree its really important to be informed. It may not sound like it but ive done a lot of reading and research on RA so feel relatively well informed on it though its the individual differences that I struggle with and a bit like the Rheumatoid Arthritis label being misnomer, I always say Rheumatoid Disease, I think terms like 'flare up' and 'remission' are very ambiguous and somewhat confusing for those of us who are nee are trying to understand the everyday nature of the disease which is often not really covered in more academic texts. I think theres also a diffetence betwren intellectually knowing about RA and psychologically and emotionally knowing. Its clear that on here and another forum im on that there is alot of confusion about this illness. Thanks for your sage advice.
Hi Beelady,
I too, have been pondering this question. I had 18m => 2years of various issues with a foot, and one hand, and then the other hand. Until finally both hands turned into a nightmare. My hand therapist took one look and sent me back to my GP, as he had concerns. Blood tests showed elevated “everything”. Diagnosed double positive RA.
I think this was my “flare” and that I had possibly been living with RA for 18 months or so.
I took Pred for a week and it knocked most of my symptoms on the head. I’m now taking Plaquenil - I now have morning stiffness and get swelling/sore joints with exercise, plus I’m fatigued a lot. So more to work on. However, my swelling/stiffness/pain issues seem to be worse on one side of my body than the other
I’ve come to the conclusion that RA is a bit of a lottery, which is why I’ve posted. I’m of the opinion that genuine feedback from RA folk is probs for the best. Helps folk to get some idea of what to expect. I do have to say that I believe my case to be quite mild so, do bear that in mind.
Hope things improve for you, and no, you’re not stupid, you are you, we’re all different.
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