Hi there
Hope you are all doing ok. I was just wondering if any of you guys are taking Baricitinib to treat lupus and how do you feel on it. Has it caused any serious infections? This was prescribed as I have exhausted methotraxte, rituximab, cellcept treatments. I’m also on steroids (deltacortril 7.5mg) for the past 26yr and plaquenil.
Many thanks
Sorry to hear you have exhausted other avenues of suppressants, interesting your being prescribed this medication. I am not familiar with this, please keep us up-to-date in how it helps you or not.... Wishing you well. ml
Hi CB My wife had been on MTX for about 15 years when it seemed to stop working and she was put on Baricitinib in March 2020. We were delighted, and had high hopes, to be getting such high class & costly treatment. However, by early May 2020 she was very ill indeed and admitted to hospital. We and the medics now think that the BCNib was so strong that it over-suppressed her immune system - the result = 3 X infections -- candidiasis (thrush) all the way down the oesophagus, pleurisy, & gastritis. To make matters worse, the hospital staff had not heard of baricitinib so kept giving her the tablets alongside the antibiotics. Bear in mind this was at the height of the first phase of covid 19 and there was no visiting and the ward would not answer the phones etc. Eventually, I managed to get through to them and had to tell them to stop the BCNib as it would be negating the antibiotic/antifungal treatments.
We now know from the ESR/CRP history that she had been building up to a huge Lupus flare as early as January 2020. About 3 weeks after being discharged (with no diagnosis i.e. the doctors did not have a clue!) a consultant rang to say that a test had come through to show that her dsDNA antibodies were over 1000 (normal max is 30!!) -- quite a strong indication that she had Lupus. Thankfully, after over 12 months of slow recovery she is now much better and has had to learn to eat and swallow again not to mention learning to walk again.
No doubt baricitinib is a good medicine for some patients. I think the moral of this story is to be a little wary and look out for any adverse signs and symptoms.
Sorry for being somewhat negative but do hope this helps you.
All the best.
Hi there
Thank you so much for your reply. I am very weary of this drug as I contracted a very rare bacterial infection which led to septic arthritis in my left shoulder. I was on rituximab and methotraxte at the time. Infectious team believed my system was suppressed too much due to the meds. My immunosuppressants were stopped straight away and because of that I am very conscious to what I am prescribed going forward and will it lead to further serious infections. Stuck between a rock and a hard place to decide what is best to do. Thanks again for your reply and I hope your wife is doing well.
Sorry --I forgot to say --the MTX was for rheumatoid arthritis. Also, she has been treated with hydroxychloroquine (400/200) since October 2020.
Severe heat intolerance 
Southampton Genral Hosp- Lupus clinic
Telephone Consultation Results of:
Flu Jab
"A Year Since Lockdown" Online Survey - NOW CLOSED
