filgotinib and shingles,

[Doodlereggie]

hi everyone

Just getting over last 2 weeks of awful shingles ,my god painful or what!!

As I am on filgotinib and it lists side effect can be reactivation of shingles virus,I can only assume it is that.Has anyone else had shingles while on any of the JAK meds?

Pharmacist prescribed antivirals within 24 hours of blisters,and g.p. Has given me amitryptaline for the nerve pain,so can’t complain at all re prompt action.My neighbour ,bless her,had doused me in calamine lotion twice a day,for which I am eternally grateful.I went to my sons round the corner this morning as been in for last 10 days,but wanted to get home after an hour,as a bit scared that his boisterous labradoodle would knock me where it is so painful and feel wiped out anyway

Rheumy nurse at Chase Farm Hospital also rang back twice to advise on stopping meds for ra while on antivirals,and then to start again Thursday night.Happy to do that as hands and feet starting to play up a bit.

Anyway,please please get shingles vaccination if possible,as it is very nasty condition and messes up our ra meds routine.

Best wishes to you all,I read all posts every day!xx

[welsh12]

Yes chicken pox and shingles cases on the increase at the moment hope you feel better soon

[Doodlereggie in reply to welsh12]

Thanks for reply.I do keep hearing of people here in Hoddesdon who have just had shingles so may not be side effects of meds at all,just picked it up at church or in shops etc.Much prefer that than meds caused it!x

[Karen12 in reply to Doodlereggie]

You can’t catch Shingles from somone with Shingles as it is a reactivated virus from past chicken pox infection. You can however catch chicken pox from someone with Shingles but it is only contracted via the liquid from the blisters I believe.

[Amnesiac3637]

HI Doodlereggie. Glad to hear you’re on the mend now as shingles is a bugger to get and get over! Good warning to everyone to get vaccinated against it. It may have been caused by reactivation due to Filgotinib or a community bout but it doesn’t really make any difference now as you’re very unlikely ever to get it again. Carry on recovering well. All the very best! Xx

[1245toie]

I was on Filogotinib & suffered a bad reaction to the drug.

Breathlessness, fainting & dizziness. I had to stop driving as I nearly passed out. Rheumatologist said I have a rare form of RA. & my immune system reacts to different meds. I am off of prescribed medication for awhile and I can honestly say I didn’t truly appreciate the positives that arthritis medicine has. I’m now relying on paracetamol and in a lot of pain. Has anyone else had problems with Filogotinib?

[tyncwmmarchhywel]

Booked in for mine soon.

[Madmusiclover]

yes! Facial shingles on Baricitinib. Still got post herpatic neuralgia under my eye 5 years on. Had first shingrix jab last month, second one booked. They weren’t offering shingrix to immunosupressed back then sadly.

[Doodlereggie in reply to Madmusiclover]

That must be awful to have it on your face,I can’t imagine.Mine is mostly on my back,side and front in a very distinct line.Thought I had got off lightly but last night and today not so good.Hoping tomorrow is better.G.p. Has given me amitryptiline but nervous to take as can be addictive I think.Just on paracetamol at present.xx

[Madmusiclover in reply to Doodlereggie]

Good luck. I did get antivirals but rather late in the day as A and E missed diagnosis. And it was a bank holiday….

[Otto11]

I’m sorry to hear you’ve been unwell. It is awful pain apparently but glad you are on the mend. My GP sent me a link to book my jab but the link only lasted a week & I was unwell so couldn’t attend. I must ask again. Take care.

[York54]

I had shingles 2 years ago, from my tummy button to my spine on my right side. It was very painful but luckily I got antivirals the day the blisters appeared. I have now started Amgevita ( amamdulib ) sp so before this treatment began I had my first shingrix jab, had second one 8 weeks later whilst my biologic had begun. I hope this will help if I get it again as it was truly horrible. Hope you feel better soon xx

[Doodlereggie in reply to York54]

Thankyou so much.I have it exact same route as you,which seems most common spot on right hand side.I am hoping worst is over today.I too will have shingrix jabs as soon as i can when this bout is over.Hopefully we will both never get it again.xx