Hi all
I have lots of questions about flares:
Do they affect all joints, whole body, different parts?
How long do they last?
Do they work their way around the body to different parts?
Now that my really terrible back/neck problems seem to have calmed down, it's the elbows, does this mean a flare? My feet hurt a lot too and my wrists but the elboes are taking a star turn.
Do flares make you feel tired?
Is fatigue a symptom of a flare?
I think yours is active disease. If it’s a flare it tends to come on quickly after awhile of being well.. one thing after another with no break is active disease
It does sound like active disease. But we all vary.
Once we have experienced both flares and uncontrolled disease activity, it’s easier to tell how our own body deals with or behaves during each stage.
thank you both - I didn't realise there was a difference. I suppose 'one thing after another' means that meds aren't doing anything?
You have echoed my feelings about flares! But what a revelation the responses about flares and active disease have been. I have had a veil lifted from my eyes and the waves of brain fog have parted to reveal the ‘blindingly obvious’. My symptoms are varied and variable...they too seem to lurk within my whole body, some days attacking one small joint, other days seemingly everywhere..sometimes mildly as if teasing and other times with a vicious intensity. Recently fatigue has been off the scale, to the point where I have had to seriously consider finding a new home for my beloved companion, Meg (field spaniel) because I have more and more times when I am unable to walk her. Those two words, “active disease” explain so much...the penny dropped! I have not got my RA under control since being diagnosed. We are always asked if we are “flaring” and being not too long along this road so not fully understanding, I have supposed all my symptoms are ‘A Flare’. However, this constant ‘flaring’ has become so debilitating and is badly impacting my physical (and now mental) health. Fortunately I have good rheumy care so after 3 failed DMARDs and a 16 week stab at Hyrimoz (no help), I am awaiting contact from Lloyds re a delivery of Orencia (abatacept) which I am hoping will be ‘The One For Me’. I’m so grateful for this amazing site, the phenomenal wisdom, insight into living with RA , practical help and laughs .... plus the medical staff involved in my (and everyone’s) care, the drugs and those who have done all the leg and brain work in their development, and the love and care of all those who know me, but at this very moment...the posts from J1707 and charisma. Thank you ladies 🙏💐💐
I don't think we've ever been in a state where we weren't in active disease state Brychni , I've had times where my jaw might hurt more then my hands but I've never been pain free since I've been diagnosed.
Now though 2 weeks in on benepali I don't wake up in the morning and think ooh my hands hurt 👍 Small steps x
Hi M - I think you've had a greater degree of pain than me. I mean it's often extreme but short lived, anywhere from a couple of days to a week or so. Although the neck/back thing went on for ages. It's so weird because after my panic about that, I can honestly say that not only is it not hurting any more but my neck is moving more freely. I know it won't last though!I remember from older posts that you were becoming really incapacitated by the pain and thankfully that hasn't happened to me. again, there are times when it interferes with acitivites but not to the extent that I have stopped doing certain things altogether.
I'm so pleased the Benepali is working for you. Have there been any side effects?
for the moment I am happy to give the MTX a chance as it hasn't given me any problems so far - just not doing anything !
I deem myself active disease as had no let up since diagnosis. When I hit the 'well route' then I would assume an off period is a flare. It took me ages to work this out.
So hard to know. I have never been pain free since I started this journey. Some days are better than others but I find also that different bits hurt more or less each day. However, I was in such a state before my meds that I could not go to bed and had to stay in the chair all night, so an grateful that I now sleep. Sleep is so important to me to make me feel that I can cope.
Hi W - what medication are you taking? Do you feel that it has helped? Yes, I have bits of me that fluctuate. As I said the elbows have taken centre stage but my feet are creeping back into the picture again. I think I have been stupid to feel relief every time a certain pain passes, because it always creeps back or something nastier comes along. It's the same with my migraines - a bit like childbirth; you forget how awful it was and then WHAM! it hits you again. I fall into the same trap every single time with trying to take 'soft' medication instead of nipping it in the bud with the injections even though after over 20 years of migraines I know full well it won't work.
I suppose at the back of my mind I am also hoping that a massive mistake has been made and it's not RD but OA and then it will all die down with a some exercise...
🙄
HI, I know how you feel. I am currently taking Cimzia (biologic) and methotrexate injections. It has definitely helped my spine enormously which I am very grateful for. However, I have pain in my knees, wrists and ankles and sometimes in my arms. It fluctuates and like you when I have a good day, I think it has all gone and then it returns. I even asked my rheumatologist if I was imagining it at which he gave me a bemused look. Sometimes I think that I am just having trouble adjusting to RD and need to accept that some days, I will just have to accept that I can barely walk. Am hoping for a review appointment with rheumatologist soon so tat I can talk to him. He is very lovely and sympathetic, so perhaps I need a change of meds. Who knows! Hang on in there. xxx
It's all individual , flares are awful and best moderated by your rheumy. I do really feel for you. Xx
Hi A - going up to 15mg of MTX tomorrow - fingers crossed. x
Goid luck , I hope that helps get on top of it, and remember the old fashioned stuff too, regular on the dot painkillers and ice/heat as is best for you 💗
Yes fatigue is a massive part of a flare for me.
does it make you feel 'go to bed' tired or physically drained sort of tired? I'm asking because lately I have had a horrible dead feeling in my muscles especially upper arms and lower legs which makes me feel physically done in but not 'head' tired - if you know what I mean? almost like mild paralysis.
Hi Brychni,I too use to wonder what was meant by flares but I think I know now for me. I occasionally get hot swollen wrists ( not at the same time) or a hot swelling on the back of my hand.sometimes an elbow.It’s always painful ,lasts for a few days and I take paracetamol. I guess it could happen anywhere in the body but these seem to be the areas I get affected, nothing too major. I am lucky in that I don’t suffer with fatigue either. I haven’t had a flare for a couple of monthsIt might be a good idea to have a chat with the rheumatology department if you have multiple ongoing flares You might need your medication adjusting.
Hi P - managed to get a phone call from rheumatology last week and this week I am going up from 10 to 15mg mtx.
Hi B it sounds as if you are in good hands and the higher dose will hopefully do the trick.
Hi. I experienced a flare last year. It started in July and ended in September. It wasn’t really bad all of that time, kind of started quietly and ended quietly. The middle part was the worst with intense pain in ankle joints, elbows, fingers and knuckles. The fatigue was bad, some days I stayed in bed and more or less slept. Then I had high temperature with chills. A flare I would not like to have again!😡. SpaceLady. Take care
Hi - that sounds horrendous did it happen while you were on medication? I read sometimes that people still have flares even though the disease is under control?
No, had not started medication at that stage. That was my 1st flare and following that was diagnosed with RA and started on medication to hopefully stop any further flares or make them less brutal🤞
Hello SL53, Im interested in how you were diagnosed with RA, I,ve been treated for PMR since oct 2016 started on 40mg pred, been a long haul, several stress epsisodes over last 5 yrs, but now been down to 4 mg , for couple of weeks, but even while on 5 mg, which had been on for mos, have started to have very painful hands, fingers stiff on waking, sometimes heels when getting out of bed, sometimes most of day, told Rheumy, and actually asked her if she would send a requisition for me to have the RA blood work test, so just wondering how your,s was diagnosed, ?
Hi Arvine I was diagnosed following an appointment with rheumatologist who examined thoroughly all my painful areas. Bloods were done before that and he had my results. ESR very high. C-reactive protein very high along with other bloods which gave abnormal readings. RA is an autoimmune illness and I already have another autoimmune illness. Not unusual for two to come along or sometimes three. So all this was taken into consideration. Oh.........also had X-rays .
Arvine.......I was immediately started on Hydroxychloroquine and feel so much better. Still feel pain in ankles in morning but apart from that all ok. Been on Hydroxychloroquine since September last year.
Hi Brychni, I'm new to all this and was only diagnosed with PsA in November, the main pain was my left elbow, right shoulder and left hamstring, in December the pain went through the roof also affecting my forearm, wrist & fingers of the left hand, I couldn't even cut up my food, I contacted the GP who said it was a flare, I wasn't even aware that this could happen, I was prescribed a weeks supply of prednisolone which helped slightly but not enough to take all the pain away and developed a burning sensation in my arm, I've also increased the MTX in the last 4 weeks to 20mg, since my last dose I've been extremely fatigued, feeling sick and dizzy, from what I understand from this lovely group it could be the MTX and I might benefit by increasing my folic acid intake, currently 5mg once a week, I also understand that if the disease is active this also causes fatigue. I've since December had pain in my feet, around my thumb on both hands and my hip which is making it difficult to sleep on my left side. I'm struggling to understand what is classed as a flare and what is active disease, they both sound very similar x
Ah yes the thumbs! I have that too now, in both. although short lived, the pain when holding something makes me wince 😣 and my wrists ache all round although in comparison to the elbows it's not that bad. They are also quite weak.Since I was diagnosed in March last year I feel things have got worse very quickly, as if the diagnosis cursed me 😅 . It's been up and down ever since and 'episodes' are getting closer and closer together and that's something I noticed from when I first realised something was not quite right - years ago before I had even the vaguest idea of what RD was.
Yes I know exactly what you mean, I've even thought is it the medication that's making it worse! I'm also wary of saying to the rheumatologist that the medication isn't working as I thought it would, perhaps I'm expecting too much 
but I'm also worried that he'll say that it isn't PsA after all and it's just random joint pain with psoriasis thrown in for good measure and to just take co-codamol or amitryptaline, mad I'm sure but......... think Covid hasn't helped with new diagnosis for people as I'm guessing the support isn't as it would be under normal circumstances but I don't know this, what you've never had you never miss so to speak which is why I'm so grateful to this site for their invaluable help and advice x
Prednisone taper pack and flares
How long do your flares last?
Mini flares and sore throat?
Flares?
