Anyone on Barcitinib? How did you get on with it?

[HilaryWB]

How are others coping with the Biologic Jak Inhibitor drug Barcitinib? I have raised platelets and am slightly anaemic on it

[Green230461]

That is interesting! My. GP asked this week for me to have a blood test because she thinks I am borderline anaemic! Test next week so I will keep you posted. Did they give any solutions? Been on baricitinib for 18 months 🙋🏻‍♀️

[Karen12]

Yes I had, high platelets for the first few blood tests which quickly settled. I have also recently been treated for anaemia, which was actually slightly low for a long time but became much more apparent quite quickly over a few months but this was before I started Baracitinib.

Unfortunately anaemia is very common with RA (anaemia of chronic disease) so some clinicians (like mine) don’t treat it as they don’t think it will necessarily improve. Mine improved dramatically with the current treatment and has had a huge impact on my fatigue levels.

[emmajj1971]

I had to stop it as it affected my liver and it wasn't working well for me

[Lighthousekeeper]

I was on it for a year. Had to have an iron infusion. I couldn’t tolerate tablets. No one linked it to the medication but they never seem to it’s only after I had stopped taking it I said I felt less swollen and they said it sometimes does that!

[Mmrr]

I did kinda ok on it, but repeatedly had minor viral infections and was changed to Toficitinib. I did not have any infections on it, but it stopped working. I'm now on Filgotinib, I've only been on it 2 weeks, so you early to make a call on it's efficacy.

[Leics]

I was on Baricitanib for a year but only half a dose due to hypogammaglobulaemia. I never had a side effect and it was great stabilised my RA well. Unfortunately it was infection that made me stop having it but with my immune system or lack of that wasn’t so surprising. I’m lucky I’ve never been anaemic so haven’t had to deal with that. With any luck the anaemia and skewed blood results might just be a blip and will normalise soon. But my experience with Bari was a good one.

[juliea793]

I have been on this medication since April 2020. It worked within two weeks. My Cholesterol is rising slightly and had a few blood results that markers slightly elevated but at the moment no extra medication. A couple of blood rechecks. If you do have problems and have to stop it, it leaves the body pretty quickly unlike medication like Enbrel .!

[Tottie10]

I was on it for about 3 years with good results. Downside was shingles, anaemia and very low neutrophils. Seemed to stop working after the first Covid jab and was switched back to an anti TNF (Rheumy didn't dwell on any connection at the time!).

[HevsK]

I’ve been on Baricitinib since end of August this year and have an almost constant runny nose since week 3. No other problems but now being investigated with bloods etc because I spent Mon-Thurs last week in the Stroke Unit. Working diagnosis is TIA but all kinds of tests been done to ensure the Baricitinib isn’t to blame and to check that further autoimmune buddies (ie Myasthenia Gravis) haven’t come to join the party. I saw my Bp go to 234/111 then they turned the screen so I couldn’t see it! I’m pretty sure the medication has been ruled out and I do hope so because my RA is the quietest it’s been for several years. I was on Tocilizumab for 10 years until June 2021 but its efficacy slowly dwindled after year 7.

Hilary, I hope your bloods settle down without further problems and you get excellent results from the Baricitinib xx

[HilaryWB in reply to HevsK]

Thank you, so far its been a life saver for me