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Opportunistic HSV Infection
I am being successfully treated for a rare autoimmune condition with 15 mg prednisone and 1 gr mycophenolate daily. Although mycophenolate use involves a risk of opportunistic HSV infections, I was not warned about this.
I recently had sex WITH A CONDOM with a partner whose status for HSV infection is unknown. Within about a day, I had developed numerous lesions. These spread rapidly and my doctor said they had an appearance consistent with HSV. A culture taken from one of the lesions was negative. Because mycophenolate therapy could not be discontinued, my doctor prescribed acyclovir. The effectiveness of acyclovir is apparently paradoxically INCREASED by mycophenolate. The lesions healed rapidly following initiation of antiviral therapy.
My questions involves testing to confirm HSV infection. My doctor ordered IgM and IgG tests for HSV-1 nd HSV-2 10 days after onset to confirm the diagnosis. These were all negative, and will be repeated at 30 days. I found these tests reassuring until I discovered that mycophenolate supresses formation of both types of antibodies. It is my understanding that all of the common HSV tests look for antibodies rather than the virus itself.
Does this mean that I may have difficulty reliably determining whether I am infected?
I am now on valacyclovir for prophylaxis and supression, because I must continue mycophenolate use. Of course, there is no point in doing this if I do not have a latent HSV-1 or HSV-2 infection. On the other hand, I am reluctant to allow a recurrent opportunistic infection. Moreover, I have a regular but intermittent partner who I have informed about these developments. She does not want to discontinue our relationship, but I do not want to put her at unnecessary risk by discontinuing suppression.
Do you have any suggestions about how to manage this complex situation?
I recently had sex WITH A CONDOM with a partner whose status for HSV infection is unknown. Within about a day, I had developed numerous lesions. These spread rapidly and my doctor said they had an appearance consistent with HSV. A culture taken from one of the lesions was negative. Because mycophenolate therapy could not be discontinued, my doctor prescribed acyclovir. The effectiveness of acyclovir is apparently paradoxically INCREASED by mycophenolate. The lesions healed rapidly following initiation of antiviral therapy.
My questions involves testing to confirm HSV infection. My doctor ordered IgM and IgG tests for HSV-1 nd HSV-2 10 days after onset to confirm the diagnosis. These were all negative, and will be repeated at 30 days. I found these tests reassuring until I discovered that mycophenolate supresses formation of both types of antibodies. It is my understanding that all of the common HSV tests look for antibodies rather than the virus itself.
Does this mean that I may have difficulty reliably determining whether I am infected?
I am now on valacyclovir for prophylaxis and supression, because I must continue mycophenolate use. Of course, there is no point in doing this if I do not have a latent HSV-1 or HSV-2 infection. On the other hand, I am reluctant to allow a recurrent opportunistic infection. Moreover, I have a regular but intermittent partner who I have informed about these developments. She does not want to discontinue our relationship, but I do not want to put her at unnecessary risk by discontinuing suppression.
Do you have any suggestions about how to manage this complex situation?
MEDICAL PROFESSIONAL
"My impression is that initial HSV infections and recurrent HSV infections are both significantly more frequent in mycophenolate users."
There are no published studies on this. More severe recurrent outbreaks fits with the common experience with other immunosuppressive drugs and diseases. I'm less sure about increased severity of initial HSV infections.
It remains my judgment that you very unlikely to have genital herpes. I can accept the possibility that various risk factors can break the wrong way, i.e. one can get infected despite a low risk exposure, symptoms can be atypical, etc. But for you to have herpes, several predictors ALL would have to break the wrong way: extremely low risk exposure; atypical symptoms; negative lesion culture; and perhaps negative blood test (if that's what you find a few weeks). Even with your immunosuppressive drugs, the odds against this sequence are astronomically small.
If you want to continue to pursue it, another approach would be to contact your sex partner and ask her (or him) to be tested for HSV. If negative, you can drop all concern about it.
If and when you have additional HSV tests, ask your doctor to skip the IgM test. As discussed many times on this forum, the HSV IgM antibody tests are useless, with a high rate of both false positive and false negative results. Only IgG testing is important in this setting.
As noted above, I would be happy to comment again after you have discussed my perspectives with your own doctor; and/or if you want to report the results of a later (6+ weeks) HSV blood test. Until then I won't have further comments or advice.
There are no published studies on this. More severe recurrent outbreaks fits with the common experience with other immunosuppressive drugs and diseases. I'm less sure about increased severity of initial HSV infections.
It remains my judgment that you very unlikely to have genital herpes. I can accept the possibility that various risk factors can break the wrong way, i.e. one can get infected despite a low risk exposure, symptoms can be atypical, etc. But for you to have herpes, several predictors ALL would have to break the wrong way: extremely low risk exposure; atypical symptoms; negative lesion culture; and perhaps negative blood test (if that's what you find a few weeks). Even with your immunosuppressive drugs, the odds against this sequence are astronomically small.
If you want to continue to pursue it, another approach would be to contact your sex partner and ask her (or him) to be tested for HSV. If negative, you can drop all concern about it.
If and when you have additional HSV tests, ask your doctor to skip the IgM test. As discussed many times on this forum, the HSV IgM antibody tests are useless, with a high rate of both false positive and false negative results. Only IgG testing is important in this setting.
As noted above, I would be happy to comment again after you have discussed my perspectives with your own doctor; and/or if you want to report the results of a later (6+ weeks) HSV blood test. Until then I won't have further comments or advice.
Thank you for your prompt response. It is much appreciated.
My principal reason for seeking advice here was to get insight from an expert on the likelihood that lab tests for HSV will eventually give me a definitive answer. I would not expect you to have also have specific expertise on the effects of immune suppression drugs, but I have now learned that mycophenolate has been shown to reduce the reliability of antibody screening tests used for CMV. I suppose that I should wait for further testing to be complete before looking for an alternative, but I am sure you understand that the psychological burden of not knowing is very great. Perhaps I could ultimately go off the suppression and try to culture a potential recurrence, but I prefer not to take that risk.
As for your observation that an initial infection in a patient on immunosuppression would likely be severe, I believe my symptoms were quite severe (at least to me). The first lesion was very large and highly inflamed, and it took nearly a week to heal. Subsequent lesions were small and unremarkable, but they were quite numerous and spread rapidly. According to my doctor, these looked very typical for genital herpes.
My impression is that initial HSV infections and recurrent HSV infections are both significantly more frequent in mycophenolate users. These are considered to be opportunistic, but not as serious as something like shingles. Moreover, they respond well to antiviral agents because mycophenolate actually potentiates such agents. I did not know any of this before but I know it now.
I know that part of your job here is to alleviate unwarranted anxiety. I would rather not have to take yet another drug for the rest of my life, but I can certainly deal with that if I have to. I just want to know what I am dealing with ASAP and to assure that I behave responsibly to prevent any further transmission.
My principal reason for seeking advice here was to get insight from an expert on the likelihood that lab tests for HSV will eventually give me a definitive answer. I would not expect you to have also have specific expertise on the effects of immune suppression drugs, but I have now learned that mycophenolate has been shown to reduce the reliability of antibody screening tests used for CMV. I suppose that I should wait for further testing to be complete before looking for an alternative, but I am sure you understand that the psychological burden of not knowing is very great. Perhaps I could ultimately go off the suppression and try to culture a potential recurrence, but I prefer not to take that risk.
As for your observation that an initial infection in a patient on immunosuppression would likely be severe, I believe my symptoms were quite severe (at least to me). The first lesion was very large and highly inflamed, and it took nearly a week to heal. Subsequent lesions were small and unremarkable, but they were quite numerous and spread rapidly. According to my doctor, these looked very typical for genital herpes.
My impression is that initial HSV infections and recurrent HSV infections are both significantly more frequent in mycophenolate users. These are considered to be opportunistic, but not as serious as something like shingles. Moreover, they respond well to antiviral agents because mycophenolate actually potentiates such agents. I did not know any of this before but I know it now.
I know that part of your job here is to alleviate unwarranted anxiety. I would rather not have to take yet another drug for the rest of my life, but I can certainly deal with that if I have to. I just want to know what I am dealing with ASAP and to assure that I behave responsibly to prevent any further transmission.
MEDICAL PROFESSIONAL
Welcome to the forum, and thanks for your question and your confidence that we might be able to help. Unfortunately, you have a complex medical problem; this really is not a situation that you should attempt to resolve by any online forum, including this one. I can make a few general comments, but you'll need to address the details with your own doctors.
Mycophenylate and other potent immunosuppressive drugs can increase the chance that a chronic infection may reactivate, but to my knowledge there is no evidence they increase the risk of infection if exposed. Your comments suggest you already know this.
The risk of catching HSV is low from any particular sexual exposure, even without a condom and when the partner is known to be infected. Given the condom use plus no evidence your partner had genital herpes, the chance you were infected with HSV was very low. As noted above, I would not expect your drug treatment to elevate the risk. You don't give enough detail about your genital lesions for me to judge the likelihood you had herpes. But new genital herpes, especially in a patient on immunosuppressive drugs, usually would be more severe than a few genital lesions. I would expect multiple lesions, serious pain, lymph node inflammation in the groin, and systemic symptoms like fever. Therefore, I'm skeptical you caught HSV or that herpes explained your genital area lesions.
I cannot judge whether mycophenolate might prevent, blunt, or delay an antibody response to HSV (or any other virus) if you were infected. From my understanding of that drug -- which admittedly is not great -- I would not think so. Therefore, I believe your negative HSV blood tests will be reliable. That said, 10 days is meaningless except as a baseline against which to compare future tests. A repeat negative test at 30 days will be reassuring, but not definitive; even in immunologically normal persons, it often takes 4-6 weeks for positive results and sometimes 3-4 months.
Finally, if worse comes to worse someday -- i.e. you have or catch HSV, of either type -- I doubt it would be a problem as an opportunistic infection. Even in people with profound immunodeficiency, e.g. overt AIDS, terminal cancer with potent chemotherapy, etc, HSV rarely causes important opportunistic infections. Certain other herpes group infections, especially cytomegalovirus and varicella zoster virus, often do so -- but HSV only rarely. So I really don't see this as a serious worry for you.
Consider printing this thread as a framework for discussion with our doctor, who probably is a much more qualified expert in opportunistic infections than I am. I would be interested in his or her response to these comments.
I hope this has been helpful. Best wishes-- HHH, MD
Mycophenylate and other potent immunosuppressive drugs can increase the chance that a chronic infection may reactivate, but to my knowledge there is no evidence they increase the risk of infection if exposed. Your comments suggest you already know this.
The risk of catching HSV is low from any particular sexual exposure, even without a condom and when the partner is known to be infected. Given the condom use plus no evidence your partner had genital herpes, the chance you were infected with HSV was very low. As noted above, I would not expect your drug treatment to elevate the risk. You don't give enough detail about your genital lesions for me to judge the likelihood you had herpes. But new genital herpes, especially in a patient on immunosuppressive drugs, usually would be more severe than a few genital lesions. I would expect multiple lesions, serious pain, lymph node inflammation in the groin, and systemic symptoms like fever. Therefore, I'm skeptical you caught HSV or that herpes explained your genital area lesions.
I cannot judge whether mycophenolate might prevent, blunt, or delay an antibody response to HSV (or any other virus) if you were infected. From my understanding of that drug -- which admittedly is not great -- I would not think so. Therefore, I believe your negative HSV blood tests will be reliable. That said, 10 days is meaningless except as a baseline against which to compare future tests. A repeat negative test at 30 days will be reassuring, but not definitive; even in immunologically normal persons, it often takes 4-6 weeks for positive results and sometimes 3-4 months.
Finally, if worse comes to worse someday -- i.e. you have or catch HSV, of either type -- I doubt it would be a problem as an opportunistic infection. Even in people with profound immunodeficiency, e.g. overt AIDS, terminal cancer with potent chemotherapy, etc, HSV rarely causes important opportunistic infections. Certain other herpes group infections, especially cytomegalovirus and varicella zoster virus, often do so -- but HSV only rarely. So I really don't see this as a serious worry for you.
Consider printing this thread as a framework for discussion with our doctor, who probably is a much more qualified expert in opportunistic infections than I am. I would be interested in his or her response to these comments.
I hope this has been helpful. Best wishes-- HHH, MD
You are reading content posted in the STDs Forum
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
