I just need some reassurance from you as i am in major panic mode and getting things out of proportion probably.
I have shingles all around my waist and am on filgotinib.200mg.Started with pain and sore skin on saturday followed by rash yesterday which follows a line from middle of back to middle of tummy.
Saw pharmacist yesterday,said was shingles ,but did not have meds in stock,expected today,they will phone.Left 2 messages on rheumy nurses at hospital helpline yesterday re filgotinib,whether to suspend,but no reply yet.So,did not take last nights meds,as thought that was right thing to do.
Pharmacist said if feel unable to wake? Or high fever etc to ring 999 and this has created panic in my mind.I live alone and feel a bit isolated.
I have normal temperature,pain is bearable so far with paracetamol and slept for 9 hours,but rash seems more this morning.Am waiting for pharmacy to deliver meds or say they are ready to be collected.Just looking for someone to diffuse panic mode really.lots of love Joan
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SO sorry you’ve got shingles - it’s vile and painful and makes you feel so ill -I had it about ten years ago and felt rotten. Don’t panic, rest and keep taking paracetamol. You need anti-virals (which is what I guess the pharmacist has ordered) to fend off post herpetic neuralgia so good that you’re getting those. If you’re not phone 111 as you are on a big immune suppressant and they will advise you. You should stop Filgotinib until the shingles have cleared like you would with any other infection.
Do hope you get sorted out soon. It’s always the way -Easter and everybody you need closes down! All the very best and hope you feel much better soon. Xx
Thankyou so much for reply.Started antivirals when my daughter in law collected them this morning,and am glad to get them.Rheumy nurse phoned back from hospital too and told me to stop my filgotinib for 7 days and to expect a flare of ra.Great!!Have put the heating on,wearing loose dress,drinking plenty of water,and listening to a good book on audiobooks,so could be a lot worse.Will binge on netflix later !
Hi joan, sorry to hear you've got the shingles nightmare. Make sure your wearing loose clothing especially as this is around your middle.Take the antivirals that will arrive from the chemist.Drink plenty of water, sleep as much as you want, take paracetamol, and you will get better.
Sounds like the chemist was just being cautious with the advise.
Thankyou for reply,and doing what you said.Had first dose of antivirals,wearing loose dress,plenty of water and taking paracetamol.Have a good audiobook on ipad,and the heating on.Cant do much more,just wait for it to pass!! Xx
Thankyou for reply so much,all gives me reassurance and takes the fear away.Started antivirals now so thats good.I was on Benepali like you last year,but am now on JAK1 .Rheumy nurse phoned me back this morning to tell me stop meds for ra for a week until stop antivirals and to expect a flare.Oh Joy!!Will take the time to rest from gardening and dogsitting for my son,having told him i am very contagious,how wicked can you get!
Can just please myself over next few days with an excuse to rest up.Have even done a Morrisons online food order for first time for Good Friday,how lazy can you get.xx
Call 111 …… I live alone & I did that when I had shingles and they got me an immediate appointment to get the antivirals and they would know what you should do about your RA drugs
I did try 111 but never got through!Have got antivirals from pharmacy on second day and rheumy nurse did phone back next day to advise to stop ra meds for 7 days until antivirals stop.Feeling o.k except that central heating won’t come on today,you couldn’t make it up!Got a hot water bottle and nice warm blanket so will survive!xx
I had shingles last September and stopped taking rinvoq for around four weeks. Rash took until late December to disappear but pain eased during that time. Trying to rest and relax I found best remedy as any sign of stress, and pain increased! Don't know whether you have previously had shingles vaccine but I was advised in January that I can't have this for a year since contracting shingles but to be sure all ok going to leave til next February.
It's such a miserable illness so wish you speedy recovery.
Thankyou so much for reply.It is indeed a miserable illness,very painful.I am relaxing,reading a lot and dozing.Plus side is on day 2 of antivirals and no side effects so far,which I was dreading,so that’s good.I was sure I had had vaccination against shingles,but will ask g.p.when they phone.Evidently shingles is reactivated by filgotinib for 1 in 100 and of course it had to be me!x
Sadly….The vaccination is not designed to stop you getting Shingles…it just pre-warns your immune system to look out for it…..so when it appears ..your system reacts & you will probably only get it mildly.
I had shingles last year around my eyes, anti virals delivered pronto and they worked so quickly thank goodness as was told to go to A and E if got too near eye. Hope they work as quick for you.
Thankyou for your reply.I remember my grandma had it in her face and head many years ago and I used to go to her every day and put cream on her.it was awful for her.I am on my second day of antivirals,and hope they work soon.Blisters just beginning,so looked out a very loose cotton dress,no bra,and look a frightful mess,but just don’t care!Did you have any side effects from the antivirals,I havnt so far so hope I won’t.xx
oh bless you. I hope you managed to get the anti virals. I had shingles on my face last year. Most horrid thing. I just slept and slept. Had 3 weeks off work, I felt so exhausted by it. I’m on different meds, but yes I had to pause mine for 2 weeks I think, until it all scabbed over and was I felt better. Rest up, drink plenty of water x
Thankyou so much for your post.I have the antivirals ,have taken 12 so far and so far so good.Have paused meds since Tuesday.Like you I feel totally wiped out,just want to sleep all the time.Felt a bit isolated and down,but just saw my neighbour who had shingles in February and she has put calamine on my back where can’t reach and that is soothing.She is going to pop in as not afraid of catching it again.Drinking plenty of water and reading audiobooks to pass the time.just got to give it time.xxx
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