Baricitinib and shingles

[MoniqueB]

Hello all. I'm set to start Baricitnib next week and read that one of the side effects is shingles. As a result, I'm considering paying out of pocket for a non-live vaccine. I'm just wondering which other UK posters have done so? And if you did receive the non-live shingles vaccine, how did you go about getting it? Thank you in advance for your help!

[Hidden]

Hi Monique before I started Baricitnib I had a blood test to see if I had immunity to shingles . Sorry can’t remember the name of test .

[helixhelix in reply to Hidden]

Its the varicella zoster virus test. You could just ask your GP if they will test you to see if you have immunity.

[Snoofy in reply to helixhelix]

YOU CANNOT HAVE THE NHS Shingles vaccine because it's LIVE vaccine especially if you have been on Biologics within a year. Check it out with your rheumy.

[helixhelix in reply to Snoofy]

I was suggesting she check first to see if she had immunity. And when she posted she hadn’t yet started on biologics so could have had the live vaccine.

[MoniqueB in reply to Hidden]

Good advice, thank you both.

[Mmrr]

I've been on Baricitinib, during which time I had a number of viral infections (including hand, foot and mouth disease) I now take Toficitinib and seem to be less prone to viral infections with it 🤞. I've never been asked about shingles or offered the vaccine. I only became aware of the possibility of getting the vaccine after I had started Baricitinib, by which time it was too late.

[MoniqueB in reply to Mmrr]

Thank you for your reply Mmrr. I'm so sorry to hear that you had a spell of viral infections but, of course, I'm happy to hear that Toficitinib has been working well for you.

[Madmusiclover]

All I can tell you is I’ve been on Baricitinib for two years and no shingles. I’m not sure how likely it is you can get shingles. I’ve had the text book two chest infections in the first year but nothing since. Good luck. It’s a great drug for me.

[MoniqueB in reply to Madmusiclover]

Thanks for letting me know MML and thank you for your good wishes! I'm delighted to hear that Baricitinib been working well for you. I hope to have a similar response. 🤞

[medway-lady]

I'm not sure if this helps but my understanding is that if you've had Chicken pox then you can get Shingles and I as not old enough to get the vaccine so I just got Shingles out of the blue and I was so ill I was taken to hospital for a few days and had to lie on a mattress that made me feel seasick. The admission was for pain relief and I had over 6 months on Pregabalin after morphine pain relief. It was agony and like being sawn in half with a blunt saw. I had Shingles in my lower back , down my leg and back up into the groin area. So if you can get a vaccine and not on the NHS then please steal it or buy it , it might save you from a virus that for some is minor but for others its hell for months. I tried CBD, the NHS cream and Tiger Balm, Deep heat and the only thing that gave any relief was the pregabalin with Deep Freeze after the scabs had healed.

[MoniqueB in reply to medway-lady]

That sounds like a truly horrific experience! Poor you! My sister had shingles a few years back and I know that it's not a walk in the park, to put it mildly. Yesterday, I contacted CityDoc to ask for details on Shingrix, but I've yet to hear back.

[Green230461]

I had shingles before baricitinib. I have had an ingrowing toe infection but that is all. The tablets have got rid of my knee pain and I can now walk again so for me it is worth the risk 🌺

[MoniqueB in reply to Green230461]

Thanks for your reply Green. I am hopeful for a time that I can be pain-free, or at least have significantly reduced pain and inflammation. The last time I saw my rheumy, she asked me if I'd had a flare and I replied that for the last three years I've never been flare free. That said, my RA has improved since the early days.

[Green230461]

Hope it works well for you 🌺

[Snoofy]

Hi Monique, I had a Shingrix DEAD shingles vaccine a few days ago and no after effects. I costs £250 for each vaccine and you need 2 vaccines the 2nd one between 2 mths and no more than 5 half months apart. Mine was done in Salisbury at Southern Independent Medical Practice and they were great. My husband drove me to the house and waited outside then we went straight home. The other choice for the same price was CityDoc - Moorgate LONDON but I didn't want to travel that far. There is no shortage of Shingrix (the nurse who gave me mine said she had given over 600 this year) it's just the NHS think that the LIVE shingles vaccine which is 50 to 60% effective is good enough yet the Americans only give Shingrix because it is 90% effective and it can be given to anyone. My 2nd Shingrix will be when I've had Baricitinib for a few months and then I will have to stop the Baricitinib for a week to have the 2nd Shingrix. Don't underestimate Shingles, in some cases it can affect your eyes and ears, some people have permanent nerve damage after the sores have healed. Of course some people don't get it but I didn't want to chance it.

[MoniqueB in reply to Snoofy]

Thank you so much for your very helpful answer Snoofy. I'm so pleased to read that you didn't have any side effects. Best of luck with the Baricitinib!

[helixhelix in reply to Snoofy]

There is still only a small production of Shingrix, so not enough to meet all demand. Especially when the Americans buy it at an inflated price so it is unaffordable for the NHS. So they buy 10 times more of the live vaccine and treat 10 times more people.

If you can afford £500 to buy it then good for you.