Just wondering if anyone can point in the direction of any guidance on whether or not to pause filgotinib around the time of covid vaccination please? I am aware of advice to pause methotrexate 2 weeks after vaccination but can’t find anything concrete on jak / filgotinib.
I think my Consultant advised 1 week before & 1 week after last time, but have had so many appts lately I am confusing myself! I asked my nurse and she thought there was no need now as we are “used” to the jab which is contradictory to what I’ve previously been told. So confusing!
Many thanks!
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RockChickGirl
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Not surprised you’re confused. The problem with getting any advice these days is that there’s no one on the end of a phone to give you any and then, after what seems the obligatory three week wait to contact someone, anyone, they often have no idea or give contradictory info so you’re even more frazzled…………
I hate to knock the NHS (I worked in it as a senior sister for 40 years) but the mess caused by the pandemic, the backlog, the lack of staff, the…oh, you get the idea, means that there’s very little continuity for us as patients with long-term conditions who need to know about the heavy-duty medicines we are prescribed with so little information and back-up.
The staff in the rheumatology units change constantly, the GP’s have very little experience of jak inhibitors, biologics etc and the patients are left scratching their heads and hoping for the best when and if they get an appointment with a rheumatologist.
Your best bet is probably to ask a pharmacist or try the wonderful people on the NRAS helpline. I was on Baricitinib (jak inhibitor) through the pandemic and have had five covid jabs and was not advised to stop it at any stage so just carried on taking it. Have now changed to Tocilizumab and have no idea whether I should stop that when I have the sixth vaccine. Luckily, I have a great rheumatology team and am seeing them early October so shall ask!
Best of luck and fingers crossed things start to improve with our new health secretary on the case……………
Thank you for your helpful and supportive reply and apologies for the delay in responding, it’s been one of those weeks! It really is very confusing and a lot is left to the patient to figure out these days. Good luck with your appt and thank you for all your years of service in the nhs!
Sorry I’ve no experience re JAK’s, but have a look on the Creaky Joints website as they follow the advice of the American College of Rheumatology which my rheumy also does, along with the British Society of Rheumatology. There is a section on CJ re pausing for vaccines and RA meds but it’s not linkable. Here’s a copy of what it said re pausing some of the meds we take for the third vaccine but the page hasn’t been updated re the boosters since then. They list the majority of RA meds on the website, but don’t have full evidence or advice for them all re pausing for the vaccines. I’m about to pause my own non JAK med soon on the advice of both Immunologist and Rheumatologist for my first booster. (I’m very behind with my vaccines.) Good luck.
1. Hold immunomodulating or immunosuppressive medications (except for glucocorticoids and most biologics) for 1-2 weeks after the third dose, assuming disease activity allowsThis applies to the following medications:Apremilast (Otzela)IVIGSulfasalazine (Azulfidine)Leflunomide (Arava)Azathioprine (Imuran)Cyclophosphamide (Cytoxan)Belimumab (Benlysta)Mycophenolate (CellCept)Oral calcineurin inhibitors (cyclosporine or tacrolimus)MethotrexateJAK inhibitors (Xeljanz, Olumiant, Rinvoq)Abatecept (Orencia)The reason for holding these medications after the third dose is to try to help your body mount as robust a response to the vaccine as possible, says Dr. Sadun. “For most patients, holding their medication for a week or two does not put them at risk of a serious flare. With the third dose, we’re trying to bring the blunted vaccine response to a full response.”
Very surprised that Leflunomide is on that list as it’s half life is over 20 days. Stopping it for 1-2 weeks after wouldn’t make much difference. You’d need to stop it at least 20 days in advance. Even when I had surgery my rheumatologist said there was no point stopping it because of the length of time it takes to leave your system.
I am on Filgotinib, I had a appointment with my Rhummy last month and we spoke about the 5th vaccine he said to stop my Methotrexate for 1 week and carry on taking Filgotinib.but I personally stop Methotrexate for 2 weeks.
I know not the same, but my rheumy has advised to stop benepali and methotrexate for two weeks after 6th vaccination and try and have at least a couple of clear days before the vaccination.
The reason it's so confused is because of the lack of evidence, so everyone has their own opinion. There is some evidence that, in some people, stopping methotrexate temporarily gave them a better immune response to the Covid jab.
It's a balance. If you are likely to have a flare because you stopped medication, then it's not advisable - a flare puts you more at risk of serious infection and vaccination takes around two weeks to be effective. If you're not likely to have a flare after stopping the medication, then you may have a better response to the vaccination.
I've been on Filgotinib since last December. I was told to stop it (eg, for a week) if I get a bad infection/ covid etc. . I checked with the Rheumy before having my 5th covid jab & they said I didn't have to stop the Filgotinib (FIL) for that. Had the jab and no problem.
I did though get covid for the 1st time about 5 weeks ago & stopped it straight away after testing positive as advised (though had had symptoms a few days beforehand) - but judged it myself once over the worst of it I started FIL again after a week off it. All has been well in that regard.
I did have an antibody infusion in the local hospital the next working day after testing positive for covid (we are eligible being on FIL with immunodeficiency as you'll know) and I commend the swift organisation & excellent service. I did have a bad reaction to it & didn't quite finish the infusion - very bad head, very high BP, funny arm etc = and weirdly one knuckle joint on opposite hand flared suddenly as if the RA inflammation instantly starting up! Was OK a couple of hours later.
Unfortunately, I have symptoms that I think are more than likely due to the FIL and being checked out - but in terms of your query - I was told it wasn't necessary to stop FIL for the covid jab & I didn't and was fine. But did stop it when I got covid itself - for a week as that 'felt right' with how I was feeling strength-wise and body-wise and as symptoms improved. I was on Methotrexate (MTX) for many years & occasionally had to come off it for infections or live bloods out of kilter etc, but was OK (though body got 'poisoned' with it really in the last few years of it & feel it has damaged me, though did a very good job really with the RA on the whole).
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