Anti TNF's/Biologics and Cold Sores ?

kellis
kellis Bots Posts: 69
edited 28. Sep 2012, 15:01 in Living with Arthritis archive
I'm on RoActemra, before that I was on Humira.
I went in for my infusion this week but they refused to do it as I have a small cold sore. I am prone to cold sores, but they have increased recently. My rheumy threw a complete wobbly and asked why I'd never told her that I get cold sores - I'd never really thought about it as it's just been something that I have over the years.
She gave a long explanation as to why I couldn't be treated with a cold sore, but as I'm in France I didn't 100% understand what she was saying - does anybody know what the danger is?
For now I've been sent home with a fortnight of anti-viral/anti-shingles/anti-herpes :shock: medication before going back to the hospital for my next infusion - assuming I get the all clear!

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Kellis, it's nice to hear from you again albeit for a not very nice reason.

    I think because we are on immuno-suppressant meds any infection can become quite dangerous as we don't necessarily produce the right symptoms at the right time. People without these meds know they are ill because their bodies produce symptoms as the white blood cells fire up and get to work. Our white blood cells don't do that particularly well (if at all) and so an infection may get a hold and turn very nasty. I remember being told about an immuno-suppressed lady who went with her husband to his rheumatology appointment only to discover she had double pneumonia. She felt a 'little under the weather', that's all.

    Take the anti-bios etc and I hope the sore clears up soon so you can have your next infusion. I have not taken my meth this week as I have a 'scratchy' throat and am developing a rather lovely chesty cough. I want whatever it is over and done with rather than battle on with a bug being aided and abetted by the meth. Let's have a race to see who gets better first! Take care and heal soon. DD
  • stickywicket
    stickywicket Member Posts: 27,104
    edited 30. Nov -1, 00:00
    From my, very limited, knowledge of these things I think DD is right - as usual :wink:

    Cold sores are a result of infection, anti-tnfs/biologics/DMARDS dampen down the immune system so we both more susceptible to infection and less able to deal with it when it arrives.

    They know now that you are prone to these so will treat you accordingly. (Probably no different to before but with both you and them more alert to any sign of infection.)
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Hi Kellis,

    cold sores are herpes simplex virus which is same family as chicken pox and shingles. I am on another anti tnf and have to see GP if I get either of them. As the others have said, it is to do with the suppression of immune system and it can cause a very nasty infection.
  • Petitesse
    Petitesse Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi Kellis,

    I am very interested in your story because I get cold sores too and I am supposed to start on TNF-blockers.

    Cold sores, as you probably know, are not an infection but a virus. It cannot be cured. You can only get meds that will reduce the length of the outbreak.
    The outbreaks usually occur when your immune system is low and this could be because of an infection somewhere or a cold or other underlying causes, even just stress.

    Could you tell me the name of the meds you were given for this? I would like to look up these meds to see if there are news on this front that I don't know about or if they are just trying to make sure you have no underlying infections.
    I am a little baffled why they would treat an outbreak that usually only last about a week at most with 2 weeks of meds? Especially anti-viral for a virus that can't be cured, but only go into dormant stage again until next time.

    Anyway, I am so glad you posted this, because I wouldn't have thought of telling this to my doctors either. I have lived with outbreaks of cold sores all my life.

    Hugs Pia
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Pia, whenever I have had to turn to anti-bios it's usually a case of a two-week course, one week to sort of get rid of it and another week to firmly knock it on the head. I always stop my meth and humira when I'm on them; alas I took my humira this week on Wednesday, feeling down and more achy than usual and what happens? A lurking bug decides to make its presence known! :lol: 'Fess up Pia, I think your rhuematologist should be made aware of this but I agree that it is hard to remember who should know what. DD
  • kellis
    kellis Bots Posts: 69
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    ..... as the white blood cells fire up and get to work. Our white blood cells don't do that particularly well (if at all) and so an infection may get a hold and turn very nasty.

    Interesting comment, as my Neutrophils (white blood cells) are also low - not dangerously low, but lower than they should be.

    Petitesse wrote:
    Could you tell me the name of the meds you were given for this? I would like to look up these meds to see if there are news on this front that I don't know about or if they are just trying to make sure you have no underlying infections.
    I am a little baffled why they would treat an outbreak that usually only last about a week at most with 2 weeks of meds? Especially anti-viral for a virus that can't be cured, but only go into dormant stage again until next time.

    I've been given a course of Valaciclovir 500mg - 6 a day for 7 days then 1 a day for 10 days. I did do a search and it appears it should lessen the frequency and severity as i'm having too many. I've had one outbreak after another for around a month, so hopefully this should sort it out and put me back to an 'acceptable' 3 or 4 a year!
  • Petitesse
    Petitesse Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi DD ,

    I was gonna start by saying that I hope you feel better after seeing your thread, and now you have lurking bugs coming after you? You poor thing, I will send some warm (((HUGS)))
    Sometimes you just wonder why you keep coming up for air, right?

    I get 2 weeks course too when it is pennicilin, but I never tried anti-viral meds. I am not sure how they differ. And yes, I will fess up!*LOL*

    Hi again Kellis,

    Thank you so much for your reply. I have always just used the over the counter type of creams like aciclovir. It never really bothered me too much. But I am glad to know now that my doctor needs to know. I have only been informed I should tell if I have an infection, so I wouldn't have thought of this myself. I should probably pay attention to the frequency of getting them too after going on TNF-blockers and see if I need meds to keep it in check too.
    Thanks again xx
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Petitesse wrote:
    Hi Kellis,

    I am very interested in your story because I get cold sores too and I am supposed to start on TNF-blockers.

    Cold sores, as you probably know, are not an infection but a virus. It cannot be cured. You can only get meds that will reduce the length of the outbreak.
    The outbreaks usually occur when your immune system is low and this could be because of an infection somewhere or a cold or other underlying causes, even just stress.

    Could you tell me the name of the meds you were given for this? I would like to look up these meds to see if there are news on this front that I don't know about or if they are just trying to make sure you have no underlying infections.
    I am a little baffled why they would treat an outbreak that usually only last about a week at most with 2 weeks of meds? Especially anti-viral for a virus that can't be cured, but only go into dormant stage again until next time.

    Anyway, I am so glad you posted this, because I wouldn't have thought of telling this to my doctors either. I have lived with outbreaks of cold sores all my life.

    Hugs Pia

    I don't know about cold sores but for shingles I used to be given Acyclovir tabs. They shorten the severity and duration of the outbreak.
    Haven't had shingles for about 10 years so don't know if there are any new drugs out there.

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