OMG what a rotten day !!

[Leics]

Morning RA warriors. Just a quick ish post. Is anyone else in as much pain today as I am ?

My legs absolutely wreck, my hands are really stiff and painful too. I know everyone has probably been there, done that and got the t-shirt but boy am I suffering today !!

I know it’s probably down to the weather and the fact I had to stop baricitinib two months ago because of two nasty virus infections. I’m currently taking 10mg of prednisone per day but that doesn’t seem to be helping much either.

Hey ho I will just increase the painkillers today and take it easy but thought I’d reach out and see that I’m not on my own, not wishing this on anyone though. I’m hoping that everyone else is as ok as they can be.

Update today I’m feeling a little better as it’s not so cold and raining cats and dogs. I forced myself to go for a walk today didn’t get far but still pleased with myself.

My bloody hands keep locking up though which as you can imagine is a bit ++ painful but at least my legs feel a little better. Very tired though PJ’s are going on early tonight lol.

Hope everyone is ok today and thanks so much for the uplifting replies to my moan yesterday 😃

[charisma]

Hi Leics,sorry you’re in so much pain. Would it perhaps be good to ask for a temporary increase in corticosteroid till you get back on effective RA suppressing meds?

I am tapering steroid myself, now down to 10mg daily too. If pain becomes too much, I will let them know as it could be 16 or more weeks till my new drug kicks in.

Just wondering, what pain med do you have? I had to quit Tramadol after it suddenly started making me very nauseous and dizzy, and nothing offered in its place. Paracetamol is no use!

[Leics in reply to charisma]

Thanks for your reply charisma. I’m on Fentanyl patches 12mg dose but I’ve swapped that for a 25mg dose today coz it’s so awful. I can’t take tramadol either just makes me unconscious literally even at a very small dose. Paracetamol is no good either but I find I get on better with effervescent ones they hit the mark quicker. I very occasionally take co-codamol but only low dose codine as it bungs you up and makes me a bit dizzy. I’m not allowed to increase the prednisone unfortunately because of immune system issues and immunologist doesn’t really like me on them at all but she doesn’t have to cope with no RA meds so I will take the risk lol. I know today I’m just having a moan and hoping things will be better tomorrow but everything hurts as much as it can including my lower back. Just call me crunchie today lol.

[charisma in reply to Leics]

Thanks, I know others who have Fentanyl. I think I need to make more fuss when pain is so bad. But ok for now. Yes, we need to let the ‘ moan’ out from time to time!

Hope you feel better soon. Gentle 🤗

[Leics in reply to charisma]

Yeah it’s supposed to be addictive and I had a massive fight with my GP to get them then he saw that I have never abused painkillers or anything else for that matter so we came to an arrangement that I will only order them when I need them. I’ve never had as many as perhaps I should I’m my own worst enemy and tough it out too often. When baricitinib started to work I think I went for 3 months this year without them but then came autumn and here we are.

[Pippy25]

There are a lot of nasty viruses and bugs about this year and they are wiping out the healthiest of people so it's harder for us to 'bounce back' so to speak when our immune systems are compromised. It's been weeks and I'm still battling with the remnants of a nasty virus then infection. So being in pain on top of this makes us feel worse. Take care and sending my warm wishes to you and hope tomorrow is a better day.

[Leics in reply to Pippy25]

Thanks yeah I’m the same had one virus which was pretty bad I was sent to A&E by my GP (over-reaction). That one lasted a month then was free from it for about 5 days and got another 🤬 that has also lasted a month but I don’t have a working immune system so hardly a surprise. I wouldn’t mind but I’m housebound most of the time so I’ve no idea where the second one came from. Obviously meds were stopped and saw rheumy last week and he’s got to arrange for another prescription for baricitinib so hopefully the pain swelling etc I have atm is only temporary and down to the weather because it will probably be another week before I get the baricitinib. I will kick my own ass soon and fight back but not today 🤗😬

[Pippy25 in reply to Leics]

Sounds similar to me, had this virus thing and ended up with a deep voice like Barry White the 70's singer, was ok for almost a week. Had a biopsy on my lip (ouch ouch) then here we go again and it's never let up. Feel drained. I feel a bit like wishbone and hibernation would be good right now (for lots of reasons), but alas I have to venture out I have no choice. Hope you feel ok soon and things get back on track. Take care

[wishbone in reply to Pippy25]

Oh ****, that's all I need with my lungs!! It's times like this I wish I was a Hedgehog! Then again they're in big trouble!

Seriously, I wonder if it's worth stopping baricitinib until the worst is over. Think I'll phone rheumy tomorrow.

[Leics in reply to wishbone]

Think in my case it’s because Bari was increased to 4mg from 2mg because I had remained infection free for almost a year. I obviously can’t tolerate the higher dose so was massively susceptible to every virus and infection going. My hubby who gave me the bug 1st time was only sick for about 4 days but it took me a month both times and I’m touching wood that now I’m going back to 2mg I will be ok and infection free from now on lol. Just a big moan fest by me today which I don’t do often coz I’m in so much pain maybe the weather but perhaps the lack of treatment??? If you think you’re ok infection wise I wouldn’t stop the Baricitinib if it helps or you’ll end up perhaps in trouble and pain like me.

[wishbone in reply to Leics]

Hiya Liecs, sorry that you're having such a rough time. Feel free to moan away as you'll have to go some to catch up with me! I've been on 2mg since starting baricitinib about a year ago. My problem is infections too as you probably know from past posts of mine. Think I've been more off than on baricitinib this past few months. Was hoping to have a decent run with it but think I'd prefer to put up with the extra pain etc for a couple of months than risk getting a chest infection. As baricitinib leaves the body a couple of days after stopping it, there may not be any worthwhile benefit coming off it, plus there's a risk of it not working again, which has just come to mind. I'll phone rheumy to see what they have to say.

Hope you feel better soon and 2mg does the trick.

Oh, almost forgot... been there, done that, got the t-shirt! lol

[sylvi]

It is miserable here in the Midlands and yes it affects my joints as well.xxxx

[Leics in reply to sylvi]

Yeah not stopped raining and bitter cold today. I knew I wouldn’t be the only one who’s really feeling it today. I’m also in the midlands but I bet it’s country wide just because it’s Election Day. Thank god for postal votes I say 😃. Hope you don’t suffer too much sylvi.

[Pippy25 in reply to Leics]

I'm a bit further t'up north and it's same here.

[CarolyneJA]

The 10 mg pred doesn't sound high enough

[Leics in reply to CarolyneJA]

Yeah I tend to agree with you but my immune system is so compromised that I won’t be given a higher dose. I only ever have prednisone for about 3 weeks at a time and then they’re always reduced slowly. I’m afraid that it’s my only choice and I’m still grateful for them when I’m feeling pants.