Prednisone and herpes

Hi.

Am a 40 year old female taking prednisone 8 months at 20mg per day now tapering down. Have not been sexually active in about 10 months. In December I noticed one tiny tear on right side labia, it was quite sore not like pimple or sebaceous cyst I would be prone to and I also had yeast infection. Treated yeast infection.  2 weeks ago suddenly had swollen itchy left labia much higher up, white cottage cheese etc. treated again for yeast. This time noticed 3 tiny sore tear/cuts inside on the mucosal membrane, LEFT side. Got very worried. 3 days later went to Infectious diseases Dr (had to wait as it was weekend), he swabbed the sore area, thought it looked 50/50 for herpes. Took blood and urine for other STDs. They all came back neg. Swab was also neg, but he said may have been too late for accurate test. He also did HSV antibody which came back positive.....I asked for which HSV, he said test did not distinguish between HSV 1 and HSV 2. Am confused, Dr says come back asap if another sore appears. He also says Herpes sores usually come back in same location, mine did not. My ex was negative for HSV, (unusual?) now I am afraid I may have unwittingly gave it to him eventhough he has no symptoms. He is getting new test.
MY questions, could I have been HSV  positive for years and years and have had NO symptoms until taking prednisone?
When I stop prednisone is it probable that I will go back to never having symptoms?  Will I be contagious?
How important is it to know if it is HSV 1 or HSV 2? Or the viral load figures that I see people quoting here, what is the benefit?
Why is it that some people are positive and have no symptoms? Can you still pass it on??
It's all a shock, sorry so long! Thanks!

[gracefromHHP]

it's unfortunate that you had the wrong blood testing done. you needed a type specific herpes igg blood test done, not the non-type specific. Pretty much the provider wasted your time and money ordering the non-type specific test :(  

next time you think you have a yeast infection, don't self treat ( and by all means do not see an infectious disease provider! ).  See your regular doctor or your gyn to be properly tested for yeast and bacterial infections vaginally  before treating.  chronic vaginitis can cause issues with the skin, causing tearing and such so make sure that you are properly treating what is going on. I know it's a pain to go and be seen when you have symptoms when you can buy otc yeast treatments but you are immunosuppressed with the long term prednisone so it's well worth proper testing to make sure you aren't having issues with a strain of yeast that needs more aggressive treatments too.   they can send a swab off to the lab to check.

if you are prone to yeast issues in general, check into either fem dophilus by jarrow or rephresh proB ( forget that company name ).  Both are probiotics that have strains that have been proven with good research to colonize the urogenital tract in females to help reduce vaginitis ( and uti's ).  Unlike some other products marketed for females, these contain strains of "good" bacteria that will do more than just give you healthier bowels.  I swear by the fem dophilus myself and always have at least 1 bottle of it in my fridge to start at the first sign of vaginitis or whenever I'm on antibiotics.  

grace

[petal130]

Most likely you had the wrong testing done. As to the swab, "thought it looked 50/50 for herpes" is not possible. A culture (assuming that's what was done) is definitive one way or the other - it goes out to the lab and either comes back positive or negative. Otherwise, if the blood test wasn't typed, then most likely you had a combined test or an IgM, both pretty much worthless for diagnosing herpes.

Best you can do at this point is call your doctors office and ask specifically for your test results. And then most likely you'll have to be properly tested with an IgG type specific blood test.

As to your symptoms, they easily could be related to the prednisone. Did he test for fungal/bacterial infection as well?

[gracefromHHP]

it's unfortunate that you had the wrong blood testing done. you needed a type specific herpes igg blood test done, not the non-type specific. Pretty much the provider wasted your time and money ordering the non-type specific test :(  

next time you think you have a yeast infection, don't self treat ( and by all means do not see an infectious disease provider! ).  See your regular doctor or your gyn to be properly tested for yeast and bacterial infections vaginally  before treating.  chronic vaginitis can cause issues with the skin, causing tearing and such so make sure that you are properly treating what is going on. I know it's a pain to go and be seen when you have symptoms when you can buy otc yeast treatments but you are immunosuppressed with the long term prednisone so it's well worth proper testing to make sure you aren't having issues with a strain of yeast that needs more aggressive treatments too.   they can send a swab off to the lab to check.

if you are prone to yeast issues in general, check into either fem dophilus by jarrow or rephresh proB ( forget that company name ).  Both are probiotics that have strains that have been proven with good research to colonize the urogenital tract in females to help reduce vaginitis ( and uti's ).  Unlike some other products marketed for females, these contain strains of "good" bacteria that will do more than just give you healthier bowels.  I swear by the fem dophilus myself and always have at least 1 bottle of it in my fridge to start at the first sign of vaginitis or whenever I'm on antibiotics.  

grace

[green2010]

Thanks.....have been reading up here on the difference between the Herpes tests and will ask for the specific HSV test instead.. It was an STD testing clinic I went to and the DR  happened to be an infectious disease specialist. Am not happy with the way he left me not really any the wiser. Years ago I used to be troubled with recurrent yeast infections, they were just constant, but since then I had managed to avoid antibiotics and it's only since been on the prednisone that I have had trouble. I do take acidophilus but I think the effect of the prednisone can overwhelm. I will visit Gyn this week I  feel like I still have a mild yeast not causing discomfort but have tiny bits of that discharge and a bit red there. Will reply when I get more results as it may help others in the same way the post here helped me!

[gracefromHHP]

most acidophilus supplements do not colonize the urogenital tract. Many of them don't even make it through digestion to colonize the bowels even. you really have to do your homework before buying a supplement.

grace

[green2010]

Hi Grace,

To update since my last post, I am getting nowhere fast unfortunately. The Ob/Gyn sent off a blood test I specifically asked for the IgG, TYPE SPECIFIC, told her I had the non specific type that came up positive. I am not in the US but surely Herpeselect is available here. She swabbed me for vaginosis and yeast, gave me a diflucan tab plus Flagyl tabs. She just called to tell me the blood test came back but it was just the non specific type AGAIN, saying that I had recent exposure to HSV and that I need to have a swab taken to confirm. I knew when I asked for the specific type test she had not a clue. She says she will call the lab again.
Also I contacted the STD dr where I first went (mentioned in my first post above) I told him what I had read included the link from here from Dr Hansfield etc., and asked him could I get the IgG specific test, not just for the purpose of knowing if I have HSV1 or HSV 2 or both but to get a supposedly more reliable result! He replied by telling me that there is too much info on the internet.....the virus reference lab he sent it to does a combined igg  HSV1 and HSV2 and does not separate out the two. He says the test is very reliable and DOES NOT give false positives!!  He also states "It just says previous exposure to HSV, but does not prove clinical disease!  He says of course best way to confirm is to come back in the first 2 days if I get a lesion to do a swab, but he thinks that as soon as I finish the prednisone that my immune system will stabilize and probably no more outbreaks.
As you can image I am not happy, I hate this wondering, the antibody test he did, he tells me 80% of the population would test positive. I wanted to know for sure so I can deal with it and move on but this way I am still in limbo.  I resented the "too much info on the internet remark he made, it was insulting, since I also tols him the info wa on the CDC website. Please advise.......

[gracefromHHP]

So you built a brick wall in your back yard and you just go out, talk to it and bang your head against it?  Good grief - I bet you are pulling your hair out about now!!

when the provider gave you flagyl and diflucan, did they properly test you for yeast and bv or just throw both at you?

it's unfortunate that the std doc i so under educated about the blood tests he is doing :(  Unfortunately that seems to be the attitude in general about herpes testing in europe fro what I've seen at the conferences I've been at.    You are right about the testing though, he is wrong.

I hope you get answers soon!  Keep going back anytime you have genital issues for proper testing and hopefully you can get the right blood test done soon. perhaps you can find a herpes support group in ireland that can help guilde you to a nearby provider who does know what they are doing?

grace

[green2010]

Grace,

The Ob/Gyn did swab me for both bacterial and yeast, she did give me both the Flagyl and Diflucan I guess to cover all and yesterday those results showed just a small amount of yeast nothing to suggest a full yeast infection. I have a lot of cyst/hair follicle bumps many under the skin  they got worse on the prednisone, Dr told me steroids thin the skin so could explain irritation there. She did mention to me about doing a PCR test for Herpes? What is that? Does that seem like a super high tech more expensive test that the type specific?? Should I go for that??
Also. my last partner got tested (the non specific typeof course) he was neg before me and is still neg, hope that is good sign?
Just one more Q please.....All my sisters and my late Mother got cold sores, I have never, how did I miss out? Even as children kisses etc., is it possible to be HSV1 pos for cold sores but never have them??
Will keep pushing that wall! Thanks so much, sorry for all the Qs I have searched but I don't think you have answered these before!

[gracefromHHP]

pcr is way to do a lesion culture that actually looks for herpes dna in lesions. you have to have symptoms to have it done.  it's more accurate than regular viral cultures of lesions because you don't have to depend on actually growing the virus out in the lab.  

pcr can not be done on blood if your provider was suggesting that. herpes is not a blood borne virus so getting a pcr blood test for herpes is a waste of time.

even the best blood tests still miss 1 out of every 10 hsv1 infections. if your gene pool is such that you are likely to get obvious cold sores ( most folks who get hsv1 don't get obvious cold sores to know that they are infected ) , you very well might not have hsv1 yourself.  At the same time, perhaps you really do have hsv1 orally and got the better family genes that keep you from having obvious cold sores. no way to know at this point due to the less accurate testing you've had done.

your questions are all appropriate - keep asking them!!

[green2010]

Grace,
I eventually found Ob/Gyn who knew where to get type specific test and unfortunately I do have HSV2. My guess is I have had it years but had no symptoms. It is about 10 weeks since stopping the Prednisone, am told it can take a while for my immune system to return to normal. I have mild outbreaks, thankfully (one blister, some pain down the back of my leg) but are very frequent, about every 2 weeks and usually a day or 2 before my period. Dr agreed this is too much, and prescribed a 3 week course of Famvir. She says I can't take it forever, but I read here of people being on suppressive therapy for a year or more???  How long can you take it? If you stop will the out breaks resume with the same frequency? Also, If I have no out breaks while taking suppressive therapy does that mean I would not be contagious.   Hope you get this with the thread. Am still adjusting to this, am single and don't think I can ever have a relationship again.

[gracefromHHP]

you can take suppressive therapy for as long as you want. if the provider is being "iffy" about famvir, ask for acyclovir. Plenty of info out there on the safety of its long term use.


The herpes handbook at www.westoverheights.com is a terrific resource for general reading on herpes. Give it a read ifyou haven't already. it's free to read online.

Even though this isn't a new infection for you, finding out you have it is. give yourself some time to adjust to the idea of it all. No reason not to date again when you are ready :)

grace

[sissygirl234]

Hi,
I am new to this forum. I am also a single women in her 40's(will be 42 very soon) and i  just got diagnosed with HSV 2 3 days ago. I don't remember having any outbreaks like I have read about on-line. I was in a committed relationship for 31/2 years until about 2 months ago. I think I must be asymptomatic or I must have a very mild case because I had no idea I was positive  for HSV 2. I got the test because I thought my ex may have been cheating on me at the end of things so I got tested just in case, not really expecting anything. Wow, was I blown away when the nurse called me with the news. I feel so crazy being a woman in y 40's, a single mom with herpes.Amazing!!!!  How have you been coping with your diagnosis? How has it affected the rest of your life?  I'm trying to deal but sometimes it's kinda hard. I'm a positive person and I'm trying to make sense of things. I like my like a lot and I don't want this to change that. Thanks for your help. Sissy

[green2010]

HI, thanks for your comment, I still have not adjusted, can't believe it, feel weird at my age, I had no symptoms not until I had to take prednisone for 8 months. Wish I never had to take that med, all I know is that a previous partner is definitely neg and that was before I started taking the meds. Also if its any help not aware of any ex boyfriends having any symptoms which mean that even though I was HSV2 pos for God knows how many years, being asymptomatic I did not pass it on. Just keep your immune system healthy. Even with supplements am still not back to normal. One Dr thinks that once it gets back to normal I may have no more out breaks but not yet happening. If you have no symptoms that is good, though the symptoms can feel like a yeast infection or a mils irritation like using a strong deodrant type soap instead of something like Dove. Not sure at all about a new relationship, this has changed everything. My Ob/Gyn is 'don't worry, it's nothing, just Herpes' well yeah, I won't die but I still hate it, just that one small blister I get feels dirty/ very painful and I feel so contagious, tho when you have even a mild outbreak, sex is the last thing on your mind. Maybe I will feel different as time goes on :(

[gracefromHHP]

so it was your blood test that came back +? do you recall the exact results?

grace

[green2010]

Grace, Yes I got a pos blood test, they didn't actually give me numbers but it WAS type specific, HSV2. How would it help to actually know the values??
Also as a follow up, I took Famvir daily for 3 weeks end of June/July, had no outbreaks, only minor side effects. I went back today to Dr, they are reluctant to put me on suppressive therapy, she says they have no previous experience of using the drug that way. I am in Ireland, and from what I can figure Famvir is the only antiviral on the market here and probably also in the UK, sure there is Zovirax for cold sores only. So it is a learning curve for the 2 Ob/Gyn I have been seening and fair enough they admit that. It started with trying to get a definite blood test and the one Dr did her homework and found the lab here to do the type specific. I also mentioned the website/handbook you had recommended (btw that was the best info on Herpes I have read, so helpful, thanks, and gave me hope that I can have a relationship without passing it on) My Dr asked for the website I just sent her the link to Westover heights clinic.So she is open minded!!
To conclude, my outbreaks, are twice a month and definitely triggered by hormone  changes, i.e. prodrome (Sharp pain down back of one leg) the night before period starts, so am miserable with both period and blisters. By day 12 or 13 of my cycle new blisters appear. Not sure if this is complete new outbreak or just new blisters from original outbreak from day 1?? Either way. I have probably only a bare week each month that I don't have new blisters or half healed etc etc.
The Dr gave me a new RX today for Famvir to begin as soon as prodrome symptoms appear just before my period starts, 2 doses per day for 5 days, 125mg, and to do this for 4 cycles, then reaccess. For me I would prefer to take it every day but this is the compromise, it seems she wants to see how I get on. So its one step at a time. What else can I do, I do understand their cautiousness with drugs they are unfamiliar with and I cannot just tell a Dr here, 'I read it on the internet and this is how they do it in America' so I will keep on pushing. With some luck my own immune system will keep getting better after 9 months of prednisone and maybe the outbreaks will get less numerous. Is it common to get 2 outbreaks per month?? Thats 24 PER YEAR!
Sorry so long winded. Appreciate all your help, you've been great! Thanks.

[gracefromHHP]

acyclovir is available in ireland and it's specifically approved for genital herpes so it shouldn't be an issue. not giving you suppressive therapy is actually totally inappropriate given the frequency of your symptoms.   since they stopped it for you, I'd try to be seen within 24-48 hours of your next ob for swabbing again to confirm your hsv2 status since there's little hope of getting confirmatory blood testing in your area I"m sure.  With your other issues, making sure this really is herpes is worthwhile.  the reason I asked for the blood test results is because there is a false positive issue with the hsv2 igg blood tests and if you have a low positive, you might not have hsv2. a lesion culture of active symptoms is an ok compromise.  

the dose of famvir for genital herpes for episodic therapy is actually a 1 day dose - 1gm 2x/day for 24 hours.  works just as well and less days to take medication.   no benefit to taking the 5 day dose and it's less convenient.  

if you get a + lesion culture, I'd be very adamant about getting suppressive therapy. it's ridiculous to wait for ob's when you are having them this frequently and one can even argue successfully that it's malpractice to not give suppressive therapy with ob's this frequently.  I used to get 20 ob's a  year at one point - seemed like I was always taking a round of acyclovir. went on daily suppressive therapy and my ob's went down to 3 or 4 a year immediately.  I had a life back.  

grace

[green2010]

Grace,
To give an up date on this sorry saga, I went to another Dr here in IRL he was trained in the US and practiced there before moving here, he is a GP. Told him my story, i.e. can't get supressive therapy from 2 Ob/Gyns only one course of Famvir 125mg twice per day for 5 days for the OB that starts with my period, no treatment for the other outbreak in the month (average 2 per month) he gives me what he says is better, an rx of 250mg 3 times a day for 5 days. Not receptive about supressive, says it's hard on kidneys/liver and also I may become resistant to antivirals????? News to me. He insisted that the higher dose for this current outbreak would prevent another OB happening so soon. I was blunt and said  'if I still get 2 a month you still won't recommend supressive therapy?'  He muttered something about talking to someone and refering me to a specialist. (He took blood to check myoverall health.  I did talk to my very helpful local pharmacist, he regularly dispenses Valtrex, Zovirax and Famvir but Rx are usually from Hospital consultants, i.e. for patients on chemo/radiation or otherwise immunosuppressed. SO, it seems the medical profession in IRL and UK will not treat HSV with supressive therapy only episodic. All I hear is that, Oh HSV is very common, but no attempt to treat it properly, maybe the hope the entire sexually active population here gets HSV so then it can't be passed on. There are no UK/IRL Herpes Forums so it just a dirty secret! Am angry.

[gracefromHHP]

no, the higher doses don't prevent another ob from coming so soon :(

No, no worries about building up resistance to the antivirals. the rate of penciclovir resistance is still the same as when it was first used for herpes treatment.  It's really not an issue for most folks who are immunocompetent ( ie otherwise healthy, no hiv or cancer ).  

no, herpes antivirals are not hard on the liver or the kidneys at all.

I can't imagine your frustration with these providers you are seeing ( resisting the urge to call them names )!

[green2010]

Hi Grace,

Am still getting approx 2 OBs per month, am planning to give a local GP a chance  am not going back to the previous GP (the American trained one mentioned above) he was dismissive when I asked if he was not comfortable prescribing antivirals would be refer or talk to some one who was.  I am determined to keep trying.
I had a terrible demoralizing experience a few days ago, a guy I had been dating and slowly geting to know over about a month,( I read the chapter on how to tell prospective partners) I found that things were getting to that point. I told him I had herpes, the result was dreadful.....apart from the shock and horror, his first instinct was ' If I was you I wouldn't tell anyone that'  then he just left and said later in a text that knowing I had it meant he could never get it out of his mind.  The rejection cos I mentioned the herpes word was devastating! I really didn't plan on getting involved with anyone, some things happen, I do need the company, I feel so lonely, not really the sex for I feel at 2 outbreaks per month I cannot offer any reassurance that a man cannot catch it from me, since the inbetween time between outbreaks is so short, I probably have viral shedding anyway. My only hope is suppression meds, I have read that this reduces asymptomatic shedding????  I would love to be able to buy antivirals online but you need an RX for that?? And the site that offer without RX surely they can't be trusted that the meds are real?  
Cannot find any chat or online discussions here to get tips on Drs from other Irish people, am very down and really don't know how to get the help I need, have lost hope....

[gracefromHHP]

Not sure of the rates of hsv2 infection in your part of the world but typically they aren't too different from those of the US and Canada.  This person really needs a reality check from the sounds of things!  That was a knee jerk reaction to hearing herpes pure and simple.

daily suppressive therapy reduces ob's by 70% and shedding by 80-90%. they really do work.  

I'm not trustful of ordering medication online that you pay for their doctor's prescription for it. too costly and you never know if you are getting what you are paying for or not.  

I don't know of any irish support groups for herpes. when I checked the yahoo uk groups, none were listed either.  

hopefully you find someone to listen and give you suppressive therapy so you can start trying to control your herpes better. If you are still getting symptoms this frequently while on suppressive therapy, then you know it's more than just herpes going on too but first you have to get a chance to control the virus much better than they've allowed you to so far :(

[green2010]

Grace, some good news at last today, was angry and riled up, called GP and told him it was not acceptable to suffer 2 OBs per month, that taking recurrent treatment did nothing as I still got another OB within 2 weeks. Said 'you are the DR but all I know is that someone with this many OBs needs to be on supressive therapy' I told him the pain and discomfort was not really the problem but I have no life and I didn't want to be a nun. I was crying, maybe that was what was needed, cos he said, I understand! Told me come see him in 2 days as he needed to consult with another DR I presume but would have something sorted for me when I go there FRiday! So fingers Xed, PLEASE let him have an RX for me. Will post again Friday!

[gracefromHHP]

fingers crossed!  

channel friday whatever you had today!!!!!

I'm going to pm you a link to an article on the long term safety of acyclovir and valtrex to print out and take with you too :)

[green2010]

Grace,

Went to Dr, gave me rx for acyclovir, to take for 30 days.....then come back to see him, to review, maybe be on it for 3 weeks and then one week off????? Christ it really is one step forward and 2 back!!! He then mentioned something about a cream?? Not for blisters, but wouldn't tell me anymore. When I come back in 30 days he will review, maybe lower dose if possible. But, get this, I go to my pharmacist, he tells me that it's a very low dose....it's total 200mg per day, i.e. 100mg twice per day!! He advises splitting a tiny tab would risk loosing part of it so advises that I may be better to take the liquid form!!! I see from Westoverheights Acyclovir for supp should be 400mg twice per day 800 total, so I only have 1/4 of the FDA recommended dose!!! Pharmacist rolled his eyes at Doctors reasoning that resistance to antivirals is a worry, he can't believe their lack of info, his words. But he then remarked that the 2 bottles he gave me would cover MORE than 30 days.  
Important question.... If at this lower dose 200mg Acyclovir daily I do NOT get any out breaks in the next 30 days, that would be fine BUT would the lower dose DECREASE that percentage (80-90%)of viral shedding/transmission risk, meaning I may have only have approx 30% reduction of viral shedding and transmission risk, compared with the larger dose.

[gracefromHHP]

it doesn't work if you don't take it all the time. on 3 weeks and off one isn't worthwhile.  

acyclovir ointment is ineffective for genital herpes recurrences.  

A lower dose isn't effective either. really, what info is this dude reading about herpes antivirals because it sure as heck isn't anything that is published in respected medical journals!!  200mg daily isn't effective for controlling genital herpes.     did you give him the article I pm'd you?  I sent you a link that you could print out.  

Resistance to herpes antivirals is the same now as it was over 20 years ago when acyclovir was first introduced - 1% for otherwise healthy people and 5% for immunocomptent folks.  

Honestly this is malpractice.  

[green2010]

I didn't see any article, what do you mean by PM, where is that article on here??
I originally went to this GP cos he used to live in the US got his MD in Boston, I asked why is it common practice in the US to use antivirals and not here....says 'Different school of thought'   It's not exactly the back of beyond here and not sure if the same 'school of thought' applies in the UK, though probably, but the UK is technically just a short trip across the border into Northern IrL the GUM clinics operate there, may check them out.

[gracefromHHP]

I sent you a private message. It should be in your inbox unless you have pm's turned off.