Big, massive flare - help!

[Amnesiac3637]

Been having problems with fatigue since I had covid in February (posted about it then) but since then my RA has joined in, my Baricitinib has seemed to stop working (am to switch to Tocilizumab ) and I’m feeling so weak after the slightest exertion that I’m not sure if I’m going mad!

It’s such a long time since I had something like this that I’m not sure how I should feel in a flare. I’m ok one minute and then my energy suddenly drains leaving me trembling with fatigue and my head woolly and as if my jaw doesn’t want to work properly to get any words out. Have to go and sit down until my legs get some strength back in them and my head clears - can take an hour or so. Am still on Baricitinib and 10 mgs of pred (up from 7.5) joints slightly better but energy zilch.

What I want to know is does anyone else get the same feeling during a flare. Rheumatology thinks this is post covid and RA combined 😫 but can’t tell me what it feels like. Thanks everyone - I know you’ll come to the rescue. X

[Hidden]

OMG FATIGUE!!! I too am on Baricitinib and struggling. I haven’t had covid but after each vaccine it doesn’t seem to work as well and now I’m struggling with various joints but it’s the fatigue that truly disabled me no amount of rest or sleep helps. Slightest exertion means dizzy woolly legs/ head even chewing or swallowing is a Herculean effort. Sorry I can’t help you but I certainly understand. I see my rheumatologist In June think I’ll be changing meds too .xx

[Amnesiac3637 in reply to Hidden]

Oh thanks, you’ve helped enormously!! I can’t remember ever feeling so knackered in head and body and so shaky and trembly with no let up from rest or sleeping. Interesting that you’re on Baricitinib and think the vaccines may have had an adverse effect on it. I’ve had four vaccines, the last one just before I got Covid and from then on not been right since. It’s either covid wot’s dun it or the vaccines or a combination but whatever, it’s all gone wrong as I was pretty well controlled on Baricitinib with no side effects.

Do hope that whatever you change to works and you get your life back! It’ll be interesting to see if the vaccines are having an effect on our meds and I expect we’ll hear from others if they think so too. All the best and hope you feel much better very soon. X

[Ali_H]

Sounds familiar!!

I was well maintained on MTX for the past 6 years (since diagnosis) and then I got COVID in Oct 2020 and it all went to pot!!! My actual bout wasn’t too bad at the time but it seems to have dragged on a bit!!I tried to sit it out and see how things would pan out but I had to add sulfasalazine in August 2021 to try and settle things with no joy so baricitinib was added in January- things are finally settling and rheumy asked me to drop the sulfasalazine in my appointment last week to see if baricitinib and MTX will work without it.

This past winter there has been a lot of hunkering down and resting... My routine was wake; work; home again - snuggle down after my bath and asleep by 7pm at the latest for about 3 months straight. This month I am finally turning the corner and having the energy to be up and doing things more but pacing is definitely crucial right now!

So give yourself time as it’s a pig of a virus even when the actual bout wasn’t that hard to deal with (in my experience any way)

Take care

Ali

[Amnesiac3637 in reply to Ali_H]

Thank you Ali. X . Good to know you’re finally coming out the other side and hope recovery continues. It is a pig of a virus - I didn’t have it badly at all but have slid downhill ever since. Lots of resting though what a pain that is!

[Otto11]

Hi I have long Covid & this is exactly how I feel. Like someone just pulled the plug out & I can’t function at all. I need a lot of rest when I get to this stage. I guess it’s post viral fatigue ( which is I presume what long covid is) plus we have our other conditions & meds thrown into the mix. Just try to pace & not do too much ( easier said than done I know). It won’t do any harm to contact your Rheumy team. Sending 🤗 x

[Amnesiac3637 in reply to Otto11]

Fabulous and sensible reply, thank you 😘 You feel so alone with something like this but this site is so good for finding out others have a similar problem and can put some perspective on it! Hope you recover as soon as possible and get rid of this vile virus and its after effects once and for all. X

[Otto11 in reply to Amnesiac3637]

Bless you thank you so much for your reply. The same applies to you too. If it’s any help at all I am starting to improve so hopefully you will follow suit. I had Covid last August so been a long time feeling rubbish. I think it didn’t help as others just don’t understand how dreadful it is & reply with stupid comments that upset me a lot. I had an appointment with my Rheumatologist in March & she has been the first person I have spoken to that really seemed to understand & is sending me for scans before referring to long covid clinic. Everything is taking forever though so I’m hoping I’m recovered by the time I get to be seen. At least she listened which is more than my GP has. So speak to your Rheumatologist or team if you can & let them know how you feel.Just noticed someone mentioned about vaccinations. I asked my Consultant about the possibility of those contributing to the fatigue or indeed causing it. She didn’t think so.

I think it’s normal for our brains to need answers as to why we are feeling so bad. I hope you start to see some improvement sooner rather than later xx

[Amnesiac3637 in reply to Otto11]

Interesting the consultant didn’t seem to think the vaccinations cause this and I tend to agree otherwise there’d be millions of us with adverse reactions! My team has today said they think this is a combination of post viral fatigue and RA flare and has become a perfect storm. Good to have some sort of answer though doesn’t help the way I feel! It is a huge problem that everything takes so long to happen these days and getting longer! Hope the scans and the clinic come after your complete recovery but if they don’t hope you get answers and help. Xx

[Otto11 in reply to Amnesiac3637]

Thanks. You too. I did eventually get referred to Endocrine & saw him last week for first time & have been under medicated with Thyroxine for several years so had dose increased & B12 injection’s reinstated ( GP stopped them at the beginning of lockdown ). Hoping both of those will help a little with the fatigue. At least I am getting an MOT. Take care xx

[Tatiana13]

I had covid last October and I suffered with fatigue and general unwellness for months , amnesia woolly head sore throat , dizziness. But have been ok since early May ,hopefully your symptom will subside with improved weather be brave

[Amnesiac3637 in reply to Tatiana13]

Thank you - I shall aim for an end after 6 months though I have to say, six minutes is long enough to have this! Very glad you’re well now and do hope you never have it again. All best to you. X

[Knit12]

I was on baricitinib but it stopped working after my first covid vaccination. I was put on Tocilizumab and the next time I had my vaccine I was told to stop taking 3 days before and 3 days after and it did the trick, I do this for each vaccine now. Unfortunately the drug wasn’t for me but I was put on Rinvoq more than 6 months ago and thankfully it has been my game changer. I think RA hits us all with fatigue but you sound a lot worse so maybe it is the covid. My flares effect my joints big time and at times I have struggled to walk or move. Hope you get sorted x