What happens now?

[Kate2628]

After waiting so long for new bio drug, Abatacept, one injection 4 days later a get shingles, also on MTX, which have to be stopped , lve no idea how long for , and whether l should go back on Abatacept when things hopefully settle down, Has anyone else had anything like this, on 5 day of medication for shingles, thanks Kate x

[Neonkittie17]

No, sorry to hear this. I’ve been on ABATACEPT since September 2022. No issues as such re infections 🙏🏻. Hope you get back on it soon and feel better. Presume you’ve notified your rheumy team.

[Kate2628 in reply to Neonkittie17]

yes lve spoken to them. Just thinking should I inform Lloyds who provide the bio drug maybe l should, thanks for your reply. Kate x

[Neonkittie17 in reply to Kate2628]

Not sure if they need to know unless you were pausing the med for a long while for an op. x

[Amnesiac3637]

Never rains……….sorry to hear you’ve hit such a snag with shingles (ouch) and hope you can get in touch with your rheumatology team to ask advice. Get well again soon and with any luck you’ll have no more trouble once the shingles has cleared.

[Kate2628 in reply to Amnesiac3637]

thanks for your reply, I’ve left a message for Rheumatology so they should get back soon, hopefully, Kate x

[TheBoys]

am sorry to hear that. That’s now one of my fears. I always hope that a med will do a wonder and then I get uncommon side effects. What now ? Best to speak with Drs I guess…. Shingles is awful my other half got it after a covid infection

[Kate2628 in reply to TheBoys]

Thanks for replying l will see my doctor again 2 more days of medication for shingles then see what happens then, not sure how long shingles lasts l expect it’s different for everyone, thanks again Kate x

[Neonkittie17 in reply to Kate2628]

Hi again, I was unable to post very much before sorry, but wanted to add my shingles were fairly mild and in one place (and weren’t as a result of ABATACEPT as it was 3 years before I started it and I was on Rtx then.) They were in an area of approx 2 x 2ins on my side/waist and were fiery and tingled. All typical symptoms. I felt a bit off colour.

I got Acyclovir anti viral tablets and took them on day 5 as I saw the GP once I saw the blisters but they said the rheumy had to authorise them and rheumatology took 4 days to get back to me so on day 4 I got fed up and went to a private dermatologist I know well who said definitely shingles and recommended the GP prescribe them immediately and told them. Dermy also recommended some soothing cream (Dermacool) you can get OTC but not to put on open blisters but wait till they’ve closed/got a scab.

The small blisters took a month to properly heal over and a couple of months to disappear and I had some loss of sensation in the blistered area but it returned after a couple of weeks. I think it’s called postherpetic neuralgia, where the brain sends strange signals to the nerve endings in the blistered areas, but the AVs are given to prevent that. Sending healing wishes. x

[Gottarelax]

No advice but gentle hugs and hope that you recover quickly x

[Kate2628 in reply to Gottarelax]

thank you for your kind reply, it means a lot when your feeling down. Kate x

[Madmusiclover]

I was told to go back on my drug post shingles ‘when I felt fit and well’. (Sadly thanks to post herpatic neuralgia that has never quite happened 🤦‍♀️)

[catcat01]

The exact same thing happened to me, i was taken of the medication and had to take an antiviral drug then wait until all the blisters had gone which took about 4 weeks, i then restarted my biologics. Hope your feeling ok as I know shingles are unbelievably painful x

[Evie3]

😭

[2678]

I was on zeljanz & I got shingles it was terrible plus about 6 UTI’s in 1 year. Finally they took me off it. I am on Rinvoq it is like a miracle drug so far. Hope u feel better soon.

[Love2camp in reply to 2678]

Can I ask please if your uti's cleared up after coming off xeljanz? I've had uti's about every 6 was for the past year and it's exhausting. I'm due to switch to abatacept this week but not because of the infections. My rheumatology nurse wouldn't agree the drug was linked to the infections.

[2678 in reply to 2678]

I was on zeljanz also had shingles & had 8

UTI’s. Went thru a series of tests meanwhile it was the medicine. Went on Rinvoq & I am fine & pain free. Before Zeljanz I had 6 different infusions nothing worked.

[Fra22-57]

When I got shingles I had to stop Abatacept for about a month or more as my body needed to fight it.As you know our immune system is rubbish and Abatacept etc lowers it more. What a pain.Hooe you recover soon as its terrible

[cathie]

shingles is horrible I had it shortly after starting rituximab. I kept on with the latter though. I’d recommend that people get the shingles jag before starting any immunocompomising therapy.

[Kitten15]

Get better soon Kate . Sending lots of gentle hugs your way. Such a horrible thing to take. No wonder your down xx

[SlothSandpit]

I got shingles whilst I was in MTX rather than my biologic and they don't seem to have reappeared since I stopped the MTX. I was put on antivirals and I think I had to stop my meds until I was on the mend. Hope it's not too bad for you ❤️

[Kariss]

Hi, sorry to hear you have got shingles. I have had recurrent shingles since my early twenties and I was also on mtx for eight years. Every time my shingles broke out I had to stop the mtx just for the course of the antivirals (5 a day for a full week). Then I was able to go back on my regimen. The shingles became so regular that I now have to take a prophylactic daily to keep them at bay. However, as you’ve only just started your biologic I’d definitely contact the rheumy team to see how long before you can re-start that. A similar thing happened to me with adalimabub and once I’d stopped taking it I wasn’t allowed to carry on. Hope this is some use to you. Best of luck.