Baricitinib

[Beth72]

Iv been taken off this medication (baricitinib) due to not working and Iv been off them just over a week I have mouth ulcers sores and spots and dry skin coming and feel like I’m having a cold has anyone else had this problem xx

[sylvi]

No, but I have only been on it less than a week so I don't know. xxxx

[Mmrr]

Beth72 I've been on and off, stopping and starting Baricitinib 4 mgs for around 8 weeks. I had to stop taking it again a couple of weeks ago mainly due to bleeding mouth mucosa, but it also flared up cold sores which I hadn't had for years. The fatigue was awful too. Rheumatology want me to try 2mgs, but they take weeks to organise.

After stopping it I felt so unwell and flared so, I started taking 4mgs every 36 hrs rather than every day, whilst waiting for 2mgs to arrive.

Fingers crossed I seem to be doing ok and feel so much better since starting it again.

[Beth72 in reply to Mmrr]

I’m still waiting for delivery of my new meds and nothing yet not even a phone call the nurse took me off barcitinib on 27th August all I’m on is painkillers and I feel awful don’t want food feels like I’m having a cold headache all my mouth and gums hurting I feel dreadful 😞

[Beth72 in reply to Beth72]

Oh and my fingers wrists and feet are all swollen 😩

[Mmrr in reply to Beth72]

It sounds like you need to ring the nurse and ask what progress has been made in ordering the new drugs. Ask for your concerns over your health to be written in yiur notes too.

[kathgallagher]

I started this about 8 weeks ago and feel awful. The pain and swelling are really getting me down. Spoke to specialist nurse who really wasn't much help. I feel like I'm existing not living.i feel as bad as when this first started 12 years ago. Spoke to GP who sympathised but his hands are tied. Thinking of trying medical herbalist

[Recorder500L]

I have been on Bariticinib since September 2018 and it really does suit me; I have had no problems at all. It started to work for me after 2 days. However everyone's system is different and as with all drugs they affect us in different ways. Sorry it is not working for you, maybe give Rheumy Nurse a ring. Take Care.