Shingles when you're immunosuppressed

Of course its easy not to understand what is happening when you have a number of different ailments and sensitivities. So when I developed a swollen eye and red swelling on my forehead I assumed it was my usual sensitivity to sun. It wasnt - it developed into shingles. My RA pain is not too bad at the moment and it looks as though I'll be able to continue with ritixumab when the time comes. But I thought I'd warn you all about the possibility of shingles when you're immunosuppressed. Its no joke, I have a band of pain across my forehead and my face has felt as though I have a lobster encrusted into it.

So that is why I've been quiet and unable to offer sympathy and support for the last month or so, I dont need any but just wanted to share. Problem is that you have to take anti-virals within 36 or 48 hours or something of the symptoms appearing. If you've had it it can return, especially if the pain is bad - as in my case. So I'm going to talk to GP about a quick way to get the anti-virals if it recurs.

Hope everyone is in a slightly better place


19 Replies

  • Oh poor Cathie, I'm so sorry to read that. I hope NRAS have picked it up, as a warning.

    Take care of yourself. You have my sympathy, whether you need it or not! And please don't bother to respond ; use that energy for something essential and/or enjoyable. . Jo x

  • sleeping in front of computer at present! Thanks

  • Sorry to learn about the shingles Cathie. Mind you it is pretty possible to get these infections when not immunesuppressed - 25% of those with autoimmune diseases have very precarious immune systems. I've just been in hospital with abdominal sepsis for a week with the latest infection on a very strong IV antibiotic despite having only just started another immunesuppressant a few weeks ago - which rules it out as culprit. The pain was on a par with the last stage of childbirth and this followed the flu and pneumonia of March/ April. Hope the pain dies down very soon for you. Tx

  • So sorry to hear this, I have had shingles twice, severely, so appreciate the pain you are in. Can recommend capsaicin cream. If it's any consolation, I had antiviral treatment both times, but still had a bad time, didn't seem to make any difference.

    Hope you get over it asap.

    Best wishes, M x

  • Really sorry to hear this Cathie, I know how painful & concerning it is, any time any where but particularly on the head. You take good care of yourself & if it inches over & starts to affect your eye don't delay in seeking help. Take care. x

  • Sorry to hear you've been having a tough time Cathie. Hope you get well enough to be able to have your rituximab when its due.

  • I'm sorry but I don't feel able to reply to everyone individually but thanks for the support. Ironically, or something, the shingles started to erupt at the point that the ritiximab kicked in. They seem happy with my response, but I'll have to keep going now until my knee op. Surgeon said its better when ra isn't flaring which is what I've been saying all along. Goodnight all xx

  • I've had it twice and had the anti virals do I know how you feel. It can be side effect of steroids too I believe . Hoping your feeling better xxx

  • Hello Cathie so sorry you have shingles. I've had it too and know just how painful it can be. Really hope you feel better soon. Also really glad the Rituximab is helping and hope it continues to help you as much as it has me. Thinking of you. Lots love Tillyxxx

  • Feel better!! Thanks for the tip. Glad your RA pain is manageable. When will you get your next rituximab infusion? How long does shingles last are you clear now?

  • Thank you friends. Ritiximab will prob be after my knee op they say the effects last quite a while. I really hope so

  • Cathie, what a rough time you are having with shingles on top of everything else !!

    Sending warmest wishes for a quick recovery, thinking of you, Lynda xx

  • Oh my gosh Cathie, this is a terrible development, but all we can do is plug on. I hope you can manage to find some type of pain control that doesn't interpreted with everything else. I agree people do not take Shingles too seriously because there isn't a lot of advertisement about is especially for anyone under 50.

    1 in 4 will get it. My rheumy had me get vaccine before I started biologics. It may not stop shingles but the Zostavax may lessen the symptoms if I did get shingles. At my age 46, the shot is only 25% effective, it is recommended in Canada not to get it until ago 50 and above, the older you are, the more affective it is. It's not covered here and the shot was very expensive. My GP disagreed with my Rheumy and told me not to waste my money. I told my GP that for me a 25% effective vaccine is better than 0% so I paid and insisted on it.

    My GP brought in a fellow doctor trying to get another doctor to agree with him ( she didn't) and he told me a side effect was the risk of getting it on the face and in the eye. This is quoted in the New England Medical Journal - a warning about being on Biologics and getting the Zostavax Vaccine.

    People need to make informed decisions and decide if it's right for them. I decided the risk was worth it because my boyfriends niece got it and then his mother got it, so the disease was close to me.

    Cathie I hope beyond hope you manage through this ok. I seen how painful this can be. Sending gentle hugs for Canada and I am hoping your symptoms fade as quick as possible, you got enough to deal with, without this added virus. ((Hugs))

  • Thanks for the hugs! I tried to get the vaccine before I started back on biologics but it had to be private. That was ok but I didn't get round to it. At present I think an early dose of anti rials is good but you have to be alert to what's going on.

  • Oh Cathie I sympathise with you I got shingles about 18 months ago and the neuralgia across my head was horrid. Yes you are right you need to get the antivirals as soon as you can or there isn't much they can do. Hope you feel better soon.

  • thank you everyone. It helps to have all the support. Just have to get on with it dont we


  • I was very fortunate when I developed shingles - the GP surgery saw me as an emergency within an hour and I was started on anti-viral medication immediately. All I had to say was that I thought it was shingles, and was immuno-suppressed, to get the receptionist swinging into action. So thanks to her and to the surgery for her training.

  • I didn't really know what it was. But they've given me antivirals now even though it's very late because the pain is continuing esp around my eyes. What a fuss. But my original post was intended to alert people to this dread affliction

  • Ouch, poor you. I've had shingles twice before I was on immunosuppressive drugs, I hope I don't get it again now that I am. Last time I had an undectable vitamin d which caused low immunity. Amitryptilline can help with the pain of shingles and help prevent post herpatic neuralgia. You have my sincere sympathy - wishing you a speedy recovery. Jane xXx

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