Baricitinib and dodgy feet....

[Felldweller]

Hi all you lovely people out there in this fabulous and SO helpful group. Quick question. Has anyone else had trouble with painful fluid retention in their feet whilst on baricitinib? And also aches and pains in other muscles/tendons/joints whilst on the same meds? I have had to stop taking the stuff just this past week, as my feet were painful and pudgy enough for me to call my (always fantastic and helpful) rheumy helpline thinking that I was having a nasty flare....but no, it would appear that the meds which are supposed to help are the culprit. I stopped taking them and my feet are less full of fluid and definitely less painful, but where to go from here? I see my consultant next month, so will have a good chat with him about it all. The worry is having to start a new drug and wondering about ghastly side effects. The baricitinib didn't cause me any obvious problems, but were clearly the enemy!! What a minefield this condition is. Take care, all.

[sylvi]

Thats scary as i am due to go on that drug in the near future.xxx

[wishbone in reply to sylvi]

As you probably know Sylvi, my feet are not in good shape due to RA erosion and trouble me a lot. Can't say that baricitinib has made them any worse, certainly no fluid like Felldweller has, except for a small amount on one ankle which was there pre-baricitinib. I'm only taking 2mg instead of the 4mg prescribed to most people, but am thinking of increasing it as it seems to be losing effect, which is a major concern for me.

Have you still not had the all clear with your lungs yet?

[sylvi in reply to wishbone]

I have finished the antibiotics so have been onto the rheumy to get something started before i go away in June i know it won't happen(or that i will get any benefit) before my May holiday.xx

[Felldweller in reply to sylvi]

Hi sylvia. As I told Wishbone, I was fine for a long time whilst on the lower 2mg daily dose. The trouble started when it was upped to 4mg daily. Have a good long chat with your rheumy about it when you see him. But again, the 2mg dose helped reduce the inflammation hugely and I had no fluid retention problems. X

[wishbone in reply to sylvi]

That is pushing it a bit. It started working for me in just a couple of days, so hopefully it will be the same for you once you get started.

[Felldweller in reply to wishbone]

Hi Wishbone. I was on the 2mg dose for a long time, and no problems. But then, like you, I felt it wasn't working any more, so was advised to up the dose, gradually, to the 4mg daily...and voila, the trouble started. I do feel that we are very much the guinea pigs where all these new meds are concerned. I have just returned home from a super walk, round the fields and lanes, and really enjoyed myself, striding out again. I could hardly walk at the start of this week because of the pain in my feet. I think the 2mg daily dose is enough? X

[sylvi in reply to Felldweller]

Wow i struggle to walk round the close.xxx

[Felldweller in reply to sylvi]

Give the lower dose baricitinib a go. Really, I did great on it. No ghastly side effects, etc. Dont be scared of the 2mg dose. You go, girl! Xx

[wishbone in reply to sylvi]

You are not on your own there Sylvi.

[sylvi in reply to wishbone]

I am trying to keep going this morning over the pain i am in.xxxx

[wishbone in reply to Felldweller]

That's not good to hear! Can you tell me exactly how they went about gradually increasing your dose to 4mg? It might be useful when I next see rheumy in late May.

I can but keep my fingers crossed as I'm experiencing increasing pain, so unless rheumy come up with something, then I don't have much choice other than upping the dose as it's a case of 'old mother hubbard went to the cupboard' regarding other RA meds. I agree 100% about the guinea pig thing and I do seem to feel more unwell and fatigued since going on baricitinib, but what else can you do! I did mention that I haven't been feeling too clever to the rheumy nurse when I saw her in January. She told me to see my GP but did jot it down in her notes.

Glad you enjoyed your walk. Wandering for miles birdwatching up in my local hills used to be a big passion of mine.

[Felldweller in reply to wishbone]

Hi again Wishbone, I must say that reading your bit about you feeling more unwell and fatigued on baricitinib rang a loud bell with me. I saw my rheumy nurse early March, whilst on 2mg, and tried to instill just how unwell, exhausted and weak I was feeling. She was great, as ever, and handed the tissues over when the tears came! So she said that the first thing to try was upping the dose of baricitinib. For a week I took 2mg in the morning, split a pill in half at night for another 1mg and all seemed ok. Then took 2mg am, 2mg pm, putting the sudden pains in my feet to maybe overdoing the gardening a bit. Thinking it was a flare scared me, as I was taking more of the meds to STOP any flare. So I was surprised when told, after giving all symptoms over the phone, that it was fluid, not inflammation, causing the feet pain and to stop the meds until the puffiness and pain had gone, then going back to the 2mg. I haven't taken anything stronger than paracetamol since Wednesday lunchtime, and I have to say that I feel SO well and HAPPY. What are these drugs doing to us? Really? I googled the long list of side effects re: baricitinib and there we go, fluid retention, depression, fatigue....and plenty more. I feel, today, as if my dimmer switch has been turned right up and everything is bright again. But what do we do to keep this dreadful disease at bay? Like I said in my first post, it's a minefield. X

[wishbone in reply to Felldweller]

That's quite a skill...cutting those tiny tabs in half!...even with a pill cutter. Think my wife will have to do the duties there. I'll see what rheumy has to say, but think it will be wise for me to stay on 3mg for much longer than a week before going on 4mg.

That's no bad thing managing on just paracetamol, and glad that you're feeling a lot better.

I hate taking these meds too, but it's a case of being damned if we do and damned if we don't, at least for some of us unfortunates. I'm participating in another thread because my tramadol has just been raised to the max dose, so am trying to find more natural remedies for constipation that these darned opiates are causing instead of filling myself up with over the counter anti-constipation meds, which I doubt do any favours to our bodies in the long run. (no pun intended) My arms and hands are so painful that it was a challenge applying cream to my face just now to control a skin condition I have, think my wife will soon be doing the honours there as too. So there's no way I can avoid high doses of opiates, at least for now. A lot hangs on an increased dose of baricitinib doing the trick, hopefully just 3mg.

Thanks Felldweller.

[Felldweller in reply to wishbone]

Hey Wishbone, good luck and the very best of British when seeing your rheumy next. Maybe I upped the dose from 3mg to 4mg too quickly, that hadn't occurred to me. But I am certainly staying off them for a week or so and will then start back on with the 2mg dose. X

[wishbone in reply to Felldweller]

Think it wise for me to give 3mg a decent run first, and who knows that might be sufficient to carry on with.

Thanks Felldweller, and good luck to you too.