Doing my usual. It’s 6am and I’ve been awake for about an hour not being able to turn my brain off. So
I was diagnosed a month ago with seropositive RA I’m not on any meds yet just a steroid injection at diagnosis. The steroid made a massive difference to the pain and stiffness. So far all is ok but symptoms are starting to come back (as expected). On Wednesday my hands were very painful and stiff and I though “here we go I took paracetamol and ibuprofen to get me through the day which helped. I fully expected to get up Thursday and be in pain again but it had really subsided again.
My question is.......is that how this disease works on a day to day basis?? I thought that when it was bad it was bad for weeks not just the odd day??
I know everyone’s different of course but trying to get some idea of what’s to come I guess. Thanks all. Going to TRY and get back to sleep now as it’s Saturday and no work so no need to be up at silly o’clock lol
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Longlocks
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What can you do to control it, I've been on methotrexate 15mg once a week now for 10 weeks nothing has changed I think I possibly hurt more .... I'm not thinking very positivity at the moment I did in the beginning but it wavering fast , sorry was wondering if you could help me
10 weeks is early days still. It can take longer for MTX to work. Sorry! This post-diagnosis period is really the absolute worst, so I do sympathise.
Have you had blood tests, and do they show that it is starting to have an effect? As often the reduction in inflammation shows up in your blood before you can actually feel it improving.
And when is your next appointment, as may need to talk about reviewing drugs and either increasing dose or adding another drug if its not working.
In the meantime you could ask you GP for a stronger anti-inflammatory.
Hi I’m not actually on any drugs at all other than the steroid injection 4/5 weeks ago. Unfortunately my bloods showed low WBC/nutrofils so cant take anything until they’ve worked out why. So far more blood tests, scan and the most traumatic bone marrow biopsy. Won’t get results till 22nd October and my next Rhumy appt is 5th Nov. Don’t get me wrong the NHS has been bloody fantastic and very thorough. They’ve also arranged that my GP can give me another steroid injection should I need one. I guess that’s what I’m trying to work out really. When do I have it?? When I have a succession of bad days I’m thinking 🤔. Thanks for your reply and info x
Hi, you also have to factor in with the timing of the steroid depo that if you are able to start on DMARD'S after your next rheum appointment they can take 12 plus weeks to start working 😒
I've had blood test every 2 weeks, just get told liver and kidney function normal no one has mentioned any other results ??? ... Thank you for your time, do you know does the pain get worse before it gets better, ? My pain seems to be even worse .
Ask! It’s a good idea to start to get to grips with blood tests. They are going to be part of your life. You have the right to get copies of your results - after all it’s your blood!
So learn to track your inflammation levels - either ESR or CRP test.
A flare that lasts one day? I wish. I would even take a week!
I have been in one since Dec 2018 in my wrists & shoulders!
RA dr has had me loaded up with prednisone since then! Been on humira, which gave me a fungus infection and needed sinus surgery, been on Xeljanze did nothing and now been on iv infusion actemra and still no relief!!
Without the prednisone I would not be able to move to even turn the faucet on to get water for the coffee pot, let along take a shower and wash my hair and get ready for work!!
I am wondering why my flare is lasting sooooo long?
Steroids are great, but not long term. I have been on them sine last November and I am trying to get off them at the moment, I am down to 5mgs from 10mgs and the 1st of next month I will reduce them again.xxxx
Congrats! I cannot even reduce to 12.5! Pain comes back! I will love to see the day when I am down to 5mg. Hopefully by then all my Cushingoid symptoms will GO AWAY!
Hi Longlicks - my only advice would be don't get complacent. Steroid made me feel like my old self! Gone were the aches and pains, but alas I spoke too soon. It all came back, I was hoping I was one of the few where it went into remission.
Prednisone hid the true pain. I vowed not to take it unless I am in such pain I have no choice.
Take each day as a blessing. Good days I make the most of things, not so good my body needs to relax. Eat well, gentle exercise, and limit stress.
Thank you. I have little alternative at the mo until I can get on the meds. I have a blood issue which needs to be investigated before I take anything for the RA. It’s all a learning curve because 2 months ago I was (I thought) pretty healthy and have never really been ill. I thought all this joint pain was menopause until I had a blood test showing my Rheumatoid Factor was 602.8 😳. I just like to have as much knowledge as poss and this is a good place to come. Thanks
Don't despair - as someone who was healthy (no smoking, drinking) never took a paracetamol - I was floored when diagnosed - I would not except it hoping it was a mistake. I had the CCP that showed mine at 200. Even if it was 5 he said you have it no matter the number. With no meds just be be mindful as to your daily lifestyle. I did not want to take medication thinking eating would help but had to succumb to meds as the destruction of tendons and tissues was raging like a fire. The meds dumbed it down. Don't rule meds out. Wishing you all the best and may you find the right meds to support you. Hessie 😌
I'd it an injection that works through the whole body or individual joint ? Please
Oh the joys and complexities of this disease. We are all different. To start with I use to get fatigue!!!! And flu like symptoms use to swipe me off my feet. I do get pain and stiffness now which can last for weeks/ months. I sometimes just get fatigue!!!!! I call it fatigue but it really doesn’t describe it . I can barely think , talk or eat etc my days just blur and barely participate in life . Even though I have no pain the disease is working away at my joints and they are often changes after a flare like this. Now I’m barely with out pain in my feet. This morning one of my toes has over lapped the other. Seems to have happened very fast and getting an appointment with a podiatrist is nigh impossible on the NHS🙄🥺. Sorry I’ve gone off topic. Flash flares for me are common. I could be having a good day and from nowhere I can’t move with stiffness and fatigue then a couple of hours later it’s gone(I hate these) it makes you feel very vulnerable. You will get to understand your disease as time goes on but it a mystery most of the time as it likes to throw you a curveball now and again.
Keep asking any questions you have . This is the best place to learn ,better than any medic 😁
My RA is not yet under control fully like yours so I need oral steroids daily and injections too when things are really bad. Yes I find I get some bad days and less bad days .... perhaps the wet weather/high humidity or eating/drinking something that makes things worse (white wine and cheap bubbly for example!).
I find cold packs help my hands and Voltarol gel for knees and ankles. I have a wheat wrap to heat in microwave for neck and shoulders which is lovely. If you can manage to get in and out of a bath try putting in Epsom salts - some find that helps too. Paracetamol or cocodamol occasionally (beware its addictive).
Hope you get some RA meds soon but steroid injections will help for the time being. You may find you need another injection if the flare continues.
Welcome. Lots of good information above, all I would add is the only thing that remains predictable with my RD is it's unpredictability. Things can change from hour to hour, morning to afternoon and back again. It's the nature of the beast. Hopefully you get onto medication soon and begin to stabilise.
Hi longlocks I to am still trying to get my head around how this blessed disease works and what is what but I just wanted to ask if you have done anything like lifting a heavy pan or anything as I had a similar thing yesterday my left hand hurting and stiff fingers , I had carpel tunnel in both my hands for a few years pre diagnosis and had the release op in my right hand in 2016 well the pain I have had yesterday felt different to RD pain and I now realise that on Thursday I did a silly thing by lifting a heavy electric fence battery a short distance and now paying for it, thing is I try to carry on as I used to (stupid thing to do) but thankfully my pain is now subsiding , sorry for the long story but just wanted to make you aware of how it can be ..
Just think of it as a very personal journey, there are no rules to this disease, everybody has a different journey and occasional we connect. Read all the experiences of others and experiment with their hints and suggestions. Your body is unique to you and you will find a path that enables you to manage this condition, I will not give into RA, whilst i have lots of living to do, even though at times it can be unpleasant.
Everyone's brains work overtime, have you tried to relax. It does help, I do my prayers in the morning, and am relaxed, try some prayers and don't think to much, we all go through this stage... Be positive it will help.
Mine usually lasts for about 2 to 3 days ,so thankfully for me I know there will be respite between flare ups. But I think you will find some people get it a lot worse and some a lot less. I take a lot of tablets and it all helps. So good luck with your treatment.
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Numbness and tingling after wrist fusion surgery 
What a terrible night ! Terrible 2 weeks actually. Support or a kind word from a fellow sufferer would would be lovely. 🌸
