I recently posted about a rash I've developed, which I first thought might be shingles. Went to my GP on monday to be told that he thinks the rash is caused by a cold sore virus and prescribed antivirals. What a relief, or so I first thought! Apparently, I've since found out that it's more than probable that I'm having my first ever outbreak of type 2 (genital) herpes, which has got a lot worse since seeing my GP. I'm not saying it's as bad as shingles, it's probably not..but it certainly ain't much fun I can assure you!

Not sure how I've managed to pick this thing up, but it's definitely not from sleeping around :) , perhaps more likely something to do with my meds and suppresed immune system. I'm due to inject myself with enbrel this evening and am wondering if I should hold off 'til I can get in touch with rheumy on monday. Same thing goes for my MTX tabs, which are due on saturday. I know that some of us have had their medication stopped with shingles, so wondering if the same goes for herpes?.. which I've heard can be a sod to shift in people not on immune suppressors, let alone people taking them.

I really didn't want to post about this on Christmas day, that's why I've left it so late. But I am a bit anxious about what the best thing for me to do?

Thoughts much appreciated, and merry Christmas everyone.

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10 Replies

  • Well shingles, chicken pox and herpes are all part of the same herpes virus so keep taking the anti virals that your doctor has prescribed. Did he not tell you what to do about taking your Enbrel? I'm afraid I can't advise you but personally, I wouldn't take it until I'd spoken to someone about it. Clemmie

  • No, he didn't say anything, and I didn't think to ask as I did not think it important at the time. I've had a headache for much of the day and am feeling feverish off and on, which could be due to the virus or the antivirals I suppose. Whatever it is, I'm feeling pretty run down at the minute.

    Thanks for replying so soon. I should have injected this afternoon but had more or less decided that I wasn't going to..think I just need some reassurance. That said, I fully appreciate that it's my own decision. Will phone my rheumy helpline monday morning.

  • It's very difficult as on here we aren't allowed to give advice but are urged to talk to our relevant medical professionals which is often difficult, especially at holiday time. But I think that we really want reassurance, don't we. I'm on Humira and I wouldn't inject that if I had shingles, etc unless I was told that I should so I think that you are just being sensible in waiting until you've spoken to your rheumy helpline. Better safe than sorry. I've just had a look at the info included with Enbrel and it says that patients should be closely monitored whilst taking it if they have an infection. So I would wait definitely. Hope you feel better soon. Clemmie

  • Thanks Clemmie, much appreciated. Enjoy what's left of Christmas......

  • Hi Wishbone. I too would wait first to speak to your doc before taking any meds, hopefully waiting a few days wont throw anything too far off, as usually the drugs stay in our systems for a long time, so even if you delay in taking them, you will likely be fine and have enough in your system to carry you through. Once you talk to your doctor they can give the go ahead or order to stop meds.

    About the herpes. Since you haven't been sleeping around ;) there are other ways to contract genital herpes. If you already carry the virus in your system for herpes simplex type 1 (HSV1) which is the oral type which sometimes comes out on mouth, lips, and nose, then you are at risk to develop herpes simplex type 2 (HSV2). The route that this happens is usually "self-infection' of hand to genital. If you have an open oral herpes sore, one that is weeping, and the liquid gets on your hand, then you touch your genital, you can develop genital herpes. This can happen when wiping after going to the washroom, and especially in the shower, when water hitting your face (with an open cold sore) runs down, or the use of a washcloth on the face, then the genitals.

    The oral type is contracted the same way, touching something or someone that is contaminated, then touching your mouth.

    Dont worry bout posting on Xmas, RD doesn't take any holidays!!!

  • Thanks for that Hobbits, very informative.

    Can't remember the last time I had a cold sore, and can count on my one hand, with a finger or two to spare, the number of times I've had a one in my life. I've been wondering if I could have picked this thing up from a mate. About 2 months back his mother had shingles and he developed a couple of cold sores around the same time. I posted here at the time seeking advice if I should give him a wide birth for a while. Anyway, it's irrelevant now as I I've got herpes and that's that.

    If I'm reading you correctly, then it seems possible that I can pass this on to others just by socialising? I ask because, all being well with me, I'm hoping to travel to the Gower Peninsula with friends on Sunday and wouldn't want to pass this thing onto any of them. Well, maybe with the exception of my cold sore mate who'll be coming along. ;)

    Fever and headaches seems to have cleared up so am feeling a bit better today. Have had a bit of a flare in my feet this last few days though, which could have been brought on by this herpes I suppose. Just hope it doesn't get any worse or I won't be going to Gower in any case.

    Thanks again

  • Im glad to hear you are felling a little better, this is good news!!

    Luckily you can not get it from just socializing, you have to come in contact with the actual virus via the liquid within a herpe blister which happens when the cold sore is weeping fluid. If you touch the liquid and then touch a door knob, the door knob can then be contaminated with the virus, and if someone else touches it, then touches their mouth or genitals they can then contact it. It can be passed onto others via intimate contact.

    If you have any flare, postpone any intimate contact with your partner.

    Yes, unfortunately one you have it you have it.

    I get oral cold sores myself, I contracted it as a kid, like most of us and I get them occasionally. My doctor GP was the one who told me to make sure to never touch genital area when you have an open oral cold sore....so i got fanatically religious about hand washing when ever the nasty cold sore comes up....

    I find when my immune is really weak, they come out more. Certain foods that have alot of Arginine which is an amino acid (tomatoes and chocolate) tend to make them come out, where as Lysine rich foods (red meat, pork, poultry tend to inhibit them. I take Lysine tablets, you take them as soon as you feel that funny tingle before an outbreak. 1000mg tablets, I take two, twice a day during an outbreak, It will make the outbreak less severe and it will go away quicker. It really does work, its chemical. Too much Arginine, stress, weakened immune can cause the virus to be released out of your spinal fluid where the virus hides within your body....Lysine amino acid counteracts the Aginine amino acid. I'm quite surprised more GP's do not tell people about this, so people needlessly suffer with cold sores. Lysine is available at any drugstore in the vitamin supplements isle.

    There is also a drug, called Zostavax, its a cream, in a tiny tube available by prescription.

    You put it on at the first sign of tingling, can be used for oral and genital. The cream has a property in it that changes cells, so you have to be careful just to put the cream on the affected area. It changes the cells and tricks the virus into not recognizing itself, so it stops growing . It wont stop a cold sore from coming, but it does limit its size and severity. I also use it on my oral cold sore, and it does help, but i find the Lysine works alot better.

    GO socialize, get out there and enjoy wishbone!!!

  • Wow!.. thanks ever so much for that lot Hobbits..looks like I did the right thing posting here! :) I'll be picking up some Lysine ASAP.

    Looks as if our Gower trip is going to be called off anyway. Not due to my condition, but because my mate has just told me he's got a nasty cold so doesn't feel like going, which makes you wonder when I was going to pull out all the stops to try and go with ailments a tad more uncomfortable than a common cold..we sure are a tough bunch us arthritics. :) That said, it's probably for the best if we leave it 'till another time as there'll be a fair bit of walking involved and think I'd be pushing my luck a little.

    All the best for the new year

  • Hi wishbone,

    sorry to hear about the problems you are having. I have put a link to the NHS website section about herpes for you. I hope that you can find all the answers that you need there:



    hope you feel better soon,

    Beverley (NRAS Helpline)

  • Thanks for that Beverley.

    Things seem to be slowly improving. Initial batch of sores are beginning to dry up, and can't say I've noticed any new ones for the last day or so. Saw my GP again today, he gave me a second course of antivirals and seems confident that this will do the trick..hope so anyway! The discomfort from this thing is no big deal, as I've obviously had to put up with far more acute continuous pain from my RA and other health conditions. It's more to do with the shock of getting herpes at my age (63) that's a little upsetting, and just in time for Christmas too..typical innit! Still, as mentioned, I seem to be on the mend so am feeling a bit more cheerful. :)

    Thanks again, and best wishes for the new year.

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