Shingles and Humira

[Siri84]

Hello all , how’s your weekend ?

I started Humira on 13th Nov and admitted to AMU yesterday with Shingles . Didn’t even know what it was before yesterday - so very painful.

My left eye is infected and my face is riddled with blisters- and I am isolated since this disease is contagious.

Stopped all medication and now , waiting for anti viral to kick in .

Did you have any such experience on biologics? Does this mean - I can’t get back on Humira again ? Frankly speaking , I don’t care for this miracle medication . I’d rather be at home in occasional pain than dealing with this dreadful experience.

Siri

[medway-lady]

I'm not on Humira but had Shingles in July and was taken into hospital being in isolation does have a plus side a single room and shower. The anti virals work quickly bu I'm still on Pregabalin as its left me with post nuroppathic pain so still hurts. A rotten disease and I hope you feel better soon. x

[Siri84 in reply to medway-lady]

Thanks for the reply . Unfortunately, I got a room with no washroom or anything attached. And they are pumping in so much of painkillers/ anti viral drugs . Face looks swollen and super horrible right now . I hope you feel better soon- this condition is even worse than RA :/

[AgedCrone]

I got Shingles over my eye & into my head a couple of years ago.

I wasn’t taken in to hospital as I was lucky (!) enough to recognise the spots on the first day they appeared so got meds. very early.

I was on Rtx which is an infusion so couldn’t do anything about that.

However, once the. Anti virals & anti biotics kicked in the pains did settle in a few weeks,

However I was left with the pins & needles like headaches for quite a while afterwards.

Do hope the meds work for you very soon.

[Shelley1701]

I had shingles on my face 3 years ago so I do feel for you. Was in a side room in hospital with no private bathroom and paint peeling off the wall. I was off the Humira and Methotrexate for about 6 weeks while I was on the antibiotics and antiviral drugs first on a drip then sent home with tablets. I looked like the phantom of the opera. Went back on the Humira and Methotrexate after the shingles had gone. Humira wasn't cause of it. Had been on it for over 10yrs. The drugs they put us on for RA mess with the immune system. Hope you get better soon. I know how awful it is.

[Siri84 in reply to Shelley1701]

Thanks Shelley for sharing this. Glad that Humira worked for you . Guess my doc will take the same route - still early to discuss . I am so dazed with all the morphine and drugs - don’t feel a thing . Thankfully they started me on anti histamines so the itchy feeling stopped . I want to go home so badly now :/

[oldtimer]

The good news in your post is that you are only having occasional pain from your Rheumatoid Disease, so that you could think of coming off a biological treatment because of the shingles episode in the dangerous place next to your eye.

If your monitoring shows that you have no active disease at present you could discuss with your medical team reducing your medication, or having a break while you recover from the shingles. But you need to keep in mind that Rheumatoid Disease needs long term monitoring to prevent bone erosions, distortion of joints and the other effects of an uncontrolled auto-immune disease.

[Siri84 in reply to oldtimer]

Hello , I was down playing the effects of RA. :/ just feel comfortable with a known devil .

I am 35 and suffering from RA since I was 17 - so have active OA in lots of joints / horrid fatigue etc . But Shingles is super painful and I don’t like hospitals and I am a clean freak .

[Neonkittie17]

Sorry to hear you have shingles. Sounds like a nasty attack. I am just getting over them myself and they occurred five days after the second infusion of my Rituximab. I had read several times that Rtx could trigger them if you’d had chicken pox as a child which I have had. This was my 8th round of Rituximab and no shingles before on the other ones. I wasn’t admitted to hospital but given Aciclovir anti virals by a GP and shingles was diagnosed by a dermatologist. I tried to inform rheumatology and get advice as to if anti virals were needed. I had to phone the rheumy secretary back again five days later to ask if anyone would speak to me to help as she wasn’t interested, and I asked her to ask someone to phone me ASAP or it would be delaying my treatment. ( I am not impressed with this secretary as she has caused havoc before resulting in my infusions being delayed a few years back. Not a nice woman.) Anyhow as it was confined to a small area on my hip and not in my eyes or multiple areas I wasn’t sent to hospital. Just told not to touch them which I haven’t. I was recommended Dermacool menthol gel by the dermatologist. The painful part of the blisters was lessened after is had a couple of days of the anti virals and also the numbness subsided a lot.

I have been told I can have my Rtx infusions next time in Spring 2020 so I don’t have to stop those. I took Humira myself for three months about six years ago and didn’t have any success with it working for RA, but it didn’t give me any side effects either. I hope your rheumy can find something to help your RA once your shingles have cleared up. I still have a small amount of nerve damage under the spots/blisters which have all healed over now after three weeks, but there is a little nerve numbness directly under them but not the huge area there was of numbness before at the onset. I only had the stabbing, burning pain too at the onset. More the numbness which was the worse for me. Hope you soon feel much better and can talk with your rheumy about the meds. Take care. NK