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 Post subject: immunosuppressed
PostPosted: Wed Apr 20, 2011 8:23 pm 

Joined: Tue Apr 19, 2011 2:57 am
Posts: 4
Location: Berkeley
I have multiple sclerosis and have been in a clinical trial since Jan 07 for a drug that sequesters lymphocytes. I do not know whether I was on drug or placebo for the first 2 years, but since Jan 09 have definitely been on the drug. In Jul 08, everyone in the study was tested for various viral infections because two participants had died from primary herpes infections (HSV2 and zoster) while being treated with high doses of corticosteroids. My HSV 2 Ab IgG came back 5.80. I knew I had been exposed to herpes during the 1970's, but was never aware of any outbreak myself.
A couple months after my diagnosis, I was having some perineal discomfort and saw 1 or 2 small lesions (not blisters); when I was checked by a gynecologist, she said I had atrophic changes related to menopause. In Sep 09. I saw 1 blister; was dx'd with HSV2 (+cx) and took acyclovir. Repeat about a year later.
This year I was having some discomfort around Christmas, but no blisters -- I made an appointment with my regular gyn, but the discomfort went away so I canceled. I had the discomfort again starting about 3 weeks ago; no blisters but I saw an "atrophic" lesion and made appointment with my gyn to discuss possible treatments. The appointment was last week. My gyn said that I did not show any other signs of menopausal atrophia (or yeast) and that she suspected the lesion and redness were herpes that my body was trying to fight off (it was in the same area as the previous blisters). She did not cx the lesions.

Questions:
1) My husband of 27 years is going to get a blood test. Am I correct in understanding that if it comes back positive, we can continue to have intercourse even though he has never noticed an symptoms?
2) I will occasionally have a blister on my tongue. I got one shortly after my 1st clinical dx of genital herpes. The blister was negative for HSV when cultured. Do I need to be concerned about oral sex?
2) Is there any point in taking the short course of acyclovir at this point? Long course?
3) Can lesions be cultured as well as blisters and is there any point in doing so?
4) Any other insights or advice for me?

Thanks so much for being here for everyone (and answering the same questions over and over)!


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 Post subject: Re: immunosuppressed
PostPosted: Thu Apr 21, 2011 5:30 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
1) My husband of 27 years is going to get a blood test. Am I correct in understanding that if it comes back positive, we can continue to have intercourse even though he has never noticed an symptoms?

correct - if you both have hsv2, it's not an issue for either of you. if he tests negative for hsv2, you already know how low the risk of transmission is so totally up to the 2 of you if you even want to change anything about your sex practices. If you did nothing this long and never even knew you had it, just avoiding sex when you have anything going on genitally will probably go a long way for the rest of your marriage together.

2) I will occasionally have a blister on my tongue. I got one shortly after my 1st clinical dx of genital herpes. The blister was negative for HSV when cultured. Do I need to be concerned about oral sex?

once you know who has what, you can make educated decisions about what to do about oral sex. same advice though as in 1st question, you've done nothing for 27 years so not really a big reason to change much now.

2) Is there any point in taking the short course of acyclovir at this point? Long course?

Personally, I'd consider daily suppressive therapy. if you are on high dose steroids and having genital issues regularly, suppressive therapy will help reduce recurrences. who needs to have more genital discomfort than necessary is my motto! We know steroids trigger herpes to reoccur more often, suppressive therapy would help to counter that side effect of the steroids for you.

3) Can lesions be cultured as well as blisters and is there any point in doing so?

well at this point you know what you have and where. Unless you have something questionable that doesn't seem like your "typical" ob's, no real reason for culturing. Just treat ob's as they happen/let them run their course or reduce ob's and their severity with suppressive therapy.

4) Any other insights or advice for me?

just keep asking questions that you and your hubby have!


betsy

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 Post subject: Re: immunosuppressed
PostPosted: Wed Apr 27, 2011 1:29 am 

Joined: Tue Apr 19, 2011 2:57 am
Posts: 4
Location: Berkeley
Ignore this -- I'm learning how to use this site


Last edited by leludo on Wed Apr 27, 2011 1:46 am, edited 1 time in total.

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 Post subject: Re: immunosuppressed
PostPosted: Wed Apr 27, 2011 1:40 am 

Joined: Tue Apr 19, 2011 2:57 am
Posts: 4
Location: Berkeley
betsyb1967 wrote:
1)
... If you did nothing this long and never even knew you had it, just avoiding sex when you have anything going on genitally will probably go a long way for the rest of your marriage together.

I guess I am most concerned because I may have been on placebo prior to Jan 09 and did not have any blisters until after that time; i.e my pre-drug strong immune system might have been protecting me from ob’s and also from shedding the virus so that it is only for the last 27 months that my husband has been at an increased risk..

Personally, I'd consider daily suppressive therapy. if you are on high dose steroids and having genital issues regularly, suppressive therapy will help reduce recurrences. who needs to have more genital discomfort than necessary is my motto! We know steroids trigger herpes to reoccur more often, suppressive therapy would help to counter that side effect of the steroids for you.

Are there problems associated with daily suppressive therapy? I have osteoporosis and GERD both of which were worsened/caused by meds I took to counter side effects of other meds I took (so I’m a little reluctant to take another new drug).

3) Can lesions be cultured as well as blisters and is there any point in doing so?

well at this point you know what you have and where. Unless you have something questionable that doesn't seem like your "typical" ob's, no real reason for culturing. Just treat ob's as they happen/let them run their course or reduce ob's and their severity with suppressive therapy.

Other than the herpes and a case of shingles, I am having very good results with this new MS drug (not a steroid). The reason I was wondering about culturing the lesions is to know how frequently I am having ob’s. If it is only the 2 blister times, then I am not too concerned. If, however, the lesions are also herpes, then I am having more frequent and prolongued ob’s and that’s a factor in deciding if (1) I want to take the daily suppressive therapy and/or (2) continue on this new MS drug which is now on the market, not presently covered by my insurance and incredibly expensive.

just keep asking questions that you and your hubby have!

My gyn gave me an rx for estrogen cream to try on my perineum short-term to see if it helps (ie the lesions are due to atrophy). Is there any problem using the cream on herpetic lesions? (I trust my gyn and figure she would not have rx’d the cream if there was a problem, but better safe than sorry).

Do you know of any good advice websites specifically for people who are immune-compromised? I have been having trouble locating one.

Thanks again



betsy


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 Post subject: Re: immunosuppressed
PostPosted: Wed Apr 27, 2011 4:20 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
if you had hsv2 prior to meeting hubby and never knew it, you've been actively shedding the virus this whole time regardless of if you were noticing ob's or not. the virus sheds about the same amount no matter if you are having 0 ob's a year or 10 ob's a year. Of course the other scenario is hubby had it prior to meeting you and transmitted it to you at some point. no way to figure it out at this point. did he get his herpes blood test results back yet?

there are no long term side effects to suppressive therapy with the herpes antivirals. nausea , headache and abdominal pain are quite common with them and typically they go away after a week or two when taking them suppressively. Acyclovir is the cheapest option and you just take it 2x/day to ward off recurrences.

no issues with using topical estrogen cream to help with atrophy issues you might be having.

betsy

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 Post subject: Re: immunosuppressed
PostPosted: Thu Apr 28, 2011 5:09 pm 

Joined: Tue Apr 19, 2011 2:57 am
Posts: 4
Location: Berkeley
No, my husband hasn’t been tested yet, but will be going tomorrow or Saturday (his pcp was out of town and just returned yesterday). Who brought the herpes into the relationship isn’t an issue for us. We were both sexually active before our marriage and are confident in each others' fidelity, so no blame games. If he is positive (which I expect he will be), it will be a relief since he hasn’t had any problems because of it.

The info re suppressive therapy and estrogen cream was very reassuring.

You’ve been such a help to me, Betsy, and I really appreciate it. Thank goodness ASHA exists! (a check is in the mail)


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 Post subject: Re: immunosuppressed
PostPosted: Sun May 01, 2011 7:20 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
we are always grateful for donations :) thank you very much!

you know how to find us if the two of you think of any more questions :)

betsy

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