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Neutropenia after 13 years Valtrex suppressive therapy
Hello there, I am a 52 yo perimenopausal female and am trying to come off Valtrex. I contracted HSV2 in 1989 and did not have any further OBs until a pregnancy in 1995. After the birth of my second child in 2001, I was having monthly OBs so began suppressive therapy (500g daily). In 2010 I was diagnosed with chronic idiopathic neutropenia (I don't know the actual neutrophil count, just that it was low enough for me to have to see a hematologist). I had continuous mouth ulcers and throat infections and small wounds took weeks to heal. A month ago I decided to go off Valtrex. Three weeks after cessation, I had a severe OB with headaches, joint pain, excruciating blisters, urinary precipitation, plus aching in the whole waterworks region (it was far worse than any earlier OB). Symptoms are slowly subsiding, but are still present after 8 days. Have there been any studies about the successful cessation of suppressive therapy? Will my immune system ever recover? Will OBs gradually become less severe? I'm willing to endure OBs for a while, but I just need some medical guidance. Thank you.
MEDICAL PROFESSIONAL
Welcome to the forum.
This is an interesting situation -- a couple of situations, actually -- and ones that should not be addressed only by a distant, online advisor. I'll give you some thoughts, but you need to be seeing someone professionally for sure. (Perhaps you are, but you don't say so.)
First, I doubt valacyclovir has anything to do with your neutropenia. Was that the reason you stopped the drug? With or without professional advice? That said, I cannot guarantee they aren't related -- rare idiosyncratic reactions can occur to almost any drug. But if your WBC count did not rise on stopping the drug, it probably is safe for you to resume it.
The second issue is easier to address. Valacyclovir is not known to have any effect on immunity to HSV. While there are some reports of people having particularly severe outbreaks after stopping long-term therapy, the research actually shows that this isn't any more common in people who have or have not been on suppressive treatment. In other words, there is no proved "rebound" effect after stopping long-term treatment. Therefore, if you continue to not take valacyclovir, I would expect your recurrent HSV-2 outbreaks to settle down into whatever pattern you had before starting treatment all those years ago -- or to something like a few outbreaks a year, generally not severe.
Finally, to cover all bases, I need to ask whether you might have been at risk recently for a new infection. Given the severity of the outbreak, I have to wonder whether you might have acquired a new infection with HSV-1, on top of your ongoing HSV-2 problem. Any recent risks? Was your current outbreak tested to identify the virus (e.g. culture or PCR test)?
I hope these comments have helped. I may have more to say if you can fill in some of the questions I have asked.
Best wishes-- HHH, MD
This is an interesting situation -- a couple of situations, actually -- and ones that should not be addressed only by a distant, online advisor. I'll give you some thoughts, but you need to be seeing someone professionally for sure. (Perhaps you are, but you don't say so.)
First, I doubt valacyclovir has anything to do with your neutropenia. Was that the reason you stopped the drug? With or without professional advice? That said, I cannot guarantee they aren't related -- rare idiosyncratic reactions can occur to almost any drug. But if your WBC count did not rise on stopping the drug, it probably is safe for you to resume it.
The second issue is easier to address. Valacyclovir is not known to have any effect on immunity to HSV. While there are some reports of people having particularly severe outbreaks after stopping long-term therapy, the research actually shows that this isn't any more common in people who have or have not been on suppressive treatment. In other words, there is no proved "rebound" effect after stopping long-term treatment. Therefore, if you continue to not take valacyclovir, I would expect your recurrent HSV-2 outbreaks to settle down into whatever pattern you had before starting treatment all those years ago -- or to something like a few outbreaks a year, generally not severe.
Finally, to cover all bases, I need to ask whether you might have been at risk recently for a new infection. Given the severity of the outbreak, I have to wonder whether you might have acquired a new infection with HSV-1, on top of your ongoing HSV-2 problem. Any recent risks? Was your current outbreak tested to identify the virus (e.g. culture or PCR test)?
I hope these comments have helped. I may have more to say if you can fill in some of the questions I have asked.
Best wishes-- HHH, MD
Hi, I have a similar issue.
I was diagnosed with HSV-1 when I was 16. My first outbreak was severe. sores everywhere in my mouth, flu symptoms, headache, swollen lymph nodes. etc..
I was then diagnosed with HSV-2 genitally at the age of 23. I had no outbreaks when I was diagnosed. My college boyfriend did at the time. not me. I was diagnosed with both via blood work.
For 10 years I would maybe get a cold sore every 3 years. I would have a genital outbreak every year. So I was really able to tolerate these viruses.
The past 2 years. All of a sudden I was experiencing outbreaks inside of my mouth on a specific area of my gums (behind my two front teeth) and the roof of my mouth, and also experiencing a genital outbreak at the same time. With these outbreaks I will get the flu like symptoms everytime. Headache, malaise, swollen neck glands. But also nerve pain. Like nerves in my neck would hurt and nerves in my scalp would hurt. This had never happened to me before. The outbreaks were happening about every 2 weeks. After suffering from both viruses attacking me at the same time every 2 weeks for about a year, I broke down and saw my gyno because she was the only one who would half way listen. She prescribed me 1000mg of valtrex a day for suppressive therapy. I started with only taking 250mg because I wanted to see if a lower dose would be effective..
Presto...no more outbreaks....for 9 months. Then fast forward to now. I started a severe outbreak while on the suppressive therapy and so far it has lasted 11 days. This outbreak is the most severe to date besides my initial outbreak, with new symptoms...I started with the flu like symptoms as usual, and then had painful sores on my gums, roof of mouth and genital area. I had the nerve pain in my neck. But this time I had a different type of headache. It was like there was pressure in side of my head or like someone was gripping my head with their hands. I also had moderate neck pain located on the back of my neck below the skull. I can describe the neck pain as just sore and achy. I have never had those 2 symptoms before. I thought being on suppressive therapy would at least reduce my symptoms during an outbreak.....?
I am so scared that one or both of these viruses is trying to travel elsewhere inside my body. I know that if it travels to your brain or organs, there is a high fatality rate. I am so worried.
I have had bloodwork done for auto immune disorders (lupus, lyme disease, rheumatoid, and for anemia..) all came back normal.
I have had ultrasounds of my liver, kidneys, pelvic area, and nothing abnormal. Only thing that came about is that I had a sightly over active thyroid. And the doctor advised not to treat it since it was mild and treating it could make it worse. I also had nodules on my thyroid that were biopsied and are not cancerous. I do not have HIV either.
I cannot figure out why all of a sudden my body cannot control these viruses and I am having frequent outbreaks. What are these new symptoms? Is it going to kill me? Have you heard of this before?
I am a 30 year old female, no children, no known health issues.
Please advise. I am desperate!!!
I was diagnosed with HSV-1 when I was 16. My first outbreak was severe. sores everywhere in my mouth, flu symptoms, headache, swollen lymph nodes. etc..
I was then diagnosed with HSV-2 genitally at the age of 23. I had no outbreaks when I was diagnosed. My college boyfriend did at the time. not me. I was diagnosed with both via blood work.
For 10 years I would maybe get a cold sore every 3 years. I would have a genital outbreak every year. So I was really able to tolerate these viruses.
The past 2 years. All of a sudden I was experiencing outbreaks inside of my mouth on a specific area of my gums (behind my two front teeth) and the roof of my mouth, and also experiencing a genital outbreak at the same time. With these outbreaks I will get the flu like symptoms everytime. Headache, malaise, swollen neck glands. But also nerve pain. Like nerves in my neck would hurt and nerves in my scalp would hurt. This had never happened to me before. The outbreaks were happening about every 2 weeks. After suffering from both viruses attacking me at the same time every 2 weeks for about a year, I broke down and saw my gyno because she was the only one who would half way listen. She prescribed me 1000mg of valtrex a day for suppressive therapy. I started with only taking 250mg because I wanted to see if a lower dose would be effective..
Presto...no more outbreaks....for 9 months. Then fast forward to now. I started a severe outbreak while on the suppressive therapy and so far it has lasted 11 days. This outbreak is the most severe to date besides my initial outbreak, with new symptoms...I started with the flu like symptoms as usual, and then had painful sores on my gums, roof of mouth and genital area. I had the nerve pain in my neck. But this time I had a different type of headache. It was like there was pressure in side of my head or like someone was gripping my head with their hands. I also had moderate neck pain located on the back of my neck below the skull. I can describe the neck pain as just sore and achy. I have never had those 2 symptoms before. I thought being on suppressive therapy would at least reduce my symptoms during an outbreak.....?
I am so scared that one or both of these viruses is trying to travel elsewhere inside my body. I know that if it travels to your brain or organs, there is a high fatality rate. I am so worried.
I have had bloodwork done for auto immune disorders (lupus, lyme disease, rheumatoid, and for anemia..) all came back normal.
I have had ultrasounds of my liver, kidneys, pelvic area, and nothing abnormal. Only thing that came about is that I had a sightly over active thyroid. And the doctor advised not to treat it since it was mild and treating it could make it worse. I also had nodules on my thyroid that were biopsied and are not cancerous. I do not have HIV either.
I cannot figure out why all of a sudden my body cannot control these viruses and I am having frequent outbreaks. What are these new symptoms? Is it going to kill me? Have you heard of this before?
I am a 30 year old female, no children, no known health issues.
Please advise. I am desperate!!!
MEDICAL PROFESSIONAL
Above you wrote "a few episodes" of facial shingles, but it now appears you had only a single recurrence 10 years later. That doesn't have any implications about the immune system, so that's no longer an issue.
But the rest of my advice still applies: see an ID specialist; continue to stay off the valacyclovir for the time being; and if and when you have apparent recurrent outbreaks of either oral or genital herpes, have the lesions promptly tested by PCR.
But the rest of my advice still applies: see an ID specialist; continue to stay off the valacyclovir for the time being; and if and when you have apparent recurrent outbreaks of either oral or genital herpes, have the lesions promptly tested by PCR.
Thank you once again Doctor. Although it was 40 years ago (!) I do remember having a large patch of blisters on my cheek and the doctor giving me an injection of some kind in my thigh. I had another, less severe, facial outbreak in the same area, 10 years later. I guess they could have been HSV1? The cold sores I get are on the corner of the lip.
MEDICAL PROFESSIONAL
There are several very atypical aspects to all this. Recurrent shingles is very rare. Were all of your "few episodes" professionally diagnosed, and tested for the singles virus? Or for HSV? How about your cold sores -- also professionally diagnosed? Were those outbreaks in your mouth, on your lips, or where?
Assuming you indeed have oral herpes, almost certainly it is HSV-1, since they began in childhood; and almost certainly your recurrent genital herpes is HSV-2. However, dual infection with both viruses does not, in itself, increase the frequency of outbreaks or severity of either one.
If not yet done in the past, all three types of your potential herpes outbreaks -- recurrent shingles (if it happens again), oral cold sores, and a genital outbreak -- need to be swab tested by PCR to identify the exact virus responsible. A blood test for HSV-1 and 2 also may be helpful. All this should be at the hands of a true expert, such as an infectious diseases specialist. I recommend you ask your ObG to refer you to an ID doc and then follow that person's advice about the details. You could print out this thread as a framework for your initial discussion with her or him.
Assuming you indeed have oral herpes, almost certainly it is HSV-1, since they began in childhood; and almost certainly your recurrent genital herpes is HSV-2. However, dual infection with both viruses does not, in itself, increase the frequency of outbreaks or severity of either one.
If not yet done in the past, all three types of your potential herpes outbreaks -- recurrent shingles (if it happens again), oral cold sores, and a genital outbreak -- need to be swab tested by PCR to identify the exact virus responsible. A blood test for HSV-1 and 2 also may be helpful. All this should be at the hands of a true expert, such as an infectious diseases specialist. I recommend you ask your ObG to refer you to an ID doc and then follow that person's advice about the details. You could print out this thread as a framework for your initial discussion with her or him.
Thank you so much Doctor. Your comments have been very helpful. I have not had a test since the first OB, so will do so ASAP. I have not had any re-infection risks (monogamy for 22 years) but I have had a few episodes of facial shingles (the first OB was at the age of 12) and regular cold sores (easily treated with Zovirax). Is it possible that I may have both HSV 1 and 2, and if so, could this account for severity? And which test do you recommend?
Thanks again.
Thanks again.
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.
