Cold Sores (Valtrex Daily Anyone)

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sooper
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Date Joined May 2003
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   Posted 8/20/2010 2:02 PM (GMT -6)   
I have had 7 cold sores in the last 8 months. I dont wanna get into details but this has ruined me, seriously ruined me :( I'm very depressed because of it, it isnt funny at all. My GP is not off on vacation until the 25th of Sept. I called my GI he is on vacation until the end of this month. So I then called my nurse and left a message and was like what are the safety issues of taking once daily Valtex to pray I can minimize this madness all I wanna do is cry. They havnt called me back.


Anyone take this on immunosurpressants?? Did it help limit the outbreak of your herpes? What if any are the possible complications??

On the site it just says the safety has not been determined... I Dont care at this point. If it kills me I would be happy with that. I just want a few happy years I can enjoy with someone without spending 14 days a month waiting to make sure these ****ers are gone and not to spread this to anyone. I'm sick of the crap people give you if someone really loves you they will deal with your problems. I have a lot of problems that people have to deal with. Who cares what they are but I assure you there is about 4 BIG issues that people have to accept. I DONT WANT PEOPLE TO HAVE TO ACCEPT ME. I just wanna be happy and take what comes : (
God help us all, please, already.

notsosicklygirl
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   Posted 8/20/2010 4:51 PM (GMT -6)   
I don't get coldsores but I know people who do. There is some prescription cream that you can use right when you feel one coming on and it can make the cold sore last a few days vs. a week+. Have you looked into this? I am sorry you're feeling so down. I can relate slightly because I have acne and though it is not contageious, it is unsightly and it makes me feel terrible about myself. I also have a lot of baggage...
 
I am sure you can get a script for valtrex and it will control the cold sores. Try not to stress, it only makes things worse.
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Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 8/20/2010 11:01 PM (GMT -6)   
Sooper,
Are you sure the cold sores are from herpes? I had mine tested and was negative. I get cold sores a lot now that I am on Imuran. Never had them before. A strong multi-vitamin and additional vitamin D and calcium decreased the outbreaks a lot. I also use an orajel mouthwash 4x a day and an rx viscous lidocaine for pain. The mouthwash is very effective. I hope you find some relief quickly!
S

j_web
Regular Member


Date Joined Nov 2009
Total Posts : 204
   Posted 8/20/2010 11:17 PM (GMT -6)   
Subzeromambo - I have a tiny thing in the corner of my mouth that won't go away, I just started imuran about 2 months ago - i have never had a cold sore before. I already take a prenatal vitamin and a ton of vitamin D and extra calcium, perhaps I should mention it to my doc and get tested?

sr5599
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   Posted 8/20/2010 11:23 PM (GMT -6)   
I never had a cold sore (though I was exposed from my ex-husband years prior) until I went on a higher (10mg/kg) dose of Remicade. I took Acyclovir every day while on Remicade. I've since quit (both Remicade and Acyclovir) and have not had another cold sore since that one time. But, I took the two at the same time for a year at least. Didn't see any adverse reactions.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

sooper
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Date Joined May 2003
Total Posts : 815
   Posted 8/21/2010 12:32 AM (GMT -6)   
I really appreciate the replies everyone. I have replied to you all in this. I doubt you will make it through it all but whatever. You have all helped me a bit. This site has always had so many great people on it. It is nice that people have a place to come for stuff like this.

Subzeromambo -These are 100% cold sores. herpes on my lips. I have gotten them and confirmed when I was about 8 year old. I am 30 now. In the last 3 years they have really been a problem and only seem to be more frequent the older I get.

notsosicklygirl -I do have the prescription cream ZOVIRAX aka Acyclovir. I find if I put this when it starts it usually still comes through or it pops up on another part of my lip which sucks, I know some people only get one in the same spot for each outbreak. It helps keep it a lot more minimal and scabs over much faster so it never gets all ***** and oozy like they used to without the cream. BUT the overal healing time is not improved by the cream, its about the same if I dont use the cream. Only like I mention they dont get as ooozy so you have a more scab like sore for the duration. I 100% need to try some sort of pills that are daily at this point. Something that is always in me at all times. Thats my only hope at this point. Im sorry you too hav a lot of baggage. It isnt nice I know and I really apprecaited your reply and optimism.

SR5599. Right there thats all I need to hear. You took the pills.I'm taking some pills. Thats that for me. I cant find much of this online, especially any specific adverse reactions with immunosurpressants other than they all say for people with healthy immune sytems with the exception of HIV patients for some reason. I wanna be optimistic but they all also say they dont know the efficiency of the pills with people on immunosurp. Like are you kidding me you havnt doe a study to see.. seriously!


Anyway.....My GP will prescribe this for me im hoping. I have gone to him for 14 years now and he is awesome. Usually when I cant get an appointment for a month he will call me within 48 hours if I request it. I'm a bit crazy too so I get pretty jumpy about my emotions he knows this and knows I dont abuse him calling me I might have done that once every 3 years over the last 9 years. I'd do it now BUT he is on vacation not in the office for a month.

darn I dont know you and its the internet but you SR5599 you say you took em im trusting you. 1 year. I'll tell my doc I have a friend who did it haha with the acycolvir PILLS. In the end im gettin pills I will get someone else on them and take them from them if I have to. I just got pretty worked up about this today for good reasons. Also what if they dont help im pretty worried at this point especially if this never gets better even with pills. I could handle 1 2 of these a year. BUT I cant blame anyone when im spending almost half of every month risking infection. I dont wanna do that to anyone. They dont deserve that. I know that. I dont mess around though with infecting people at the first sign right until a few days after its been totally clear. I avoid all contact. What happens though if one is kinda there or some crap and I dont notice you know. NOT GOOD. You can get these bad boys downstairs... not good at all!!!! I dont have any there ever so thats good but I cant imagine doing that to someone by mistake. I couldnt live with myself.
God help us all, please, already.

Post Edited (sooper) : 8/20/2010 11:42:09 PM (GMT-6)


Subzeromambo
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Date Joined Sep 2009
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   Posted 8/21/2010 1:07 AM (GMT -6)   
j_web,
My husband's ex-wife had herpes so I was worried my husband might be a carrier and gave it to me. He has never had any symptoms. I had the cold sores tested for piece of mind and to make sure I wasn't contagious. If you have ever been exposed to herpes, I would have it tested.


Soopa,
I checked with my pharmacist and there are no contraindacations to your taking it with Azathioprine, Remicaide or Humira. I don't know which immune supressant you are on. You might want to check the manufacturers website. I hope you are out of pain soon.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/21/2010 1:59 AM (GMT -6)   
My wife has had cold sores on her lips since she was a little girl and she does not have the type of herpes that calls for valtrex or is sexually transmitted. All cold sores are a type of herpes but there are multiple types of this virus and you should be tested to see what type you have. You may not need valtrex and there may be other forms of support. She uses an over the counter medication called herpicin whenever she gets a cold sore and it helps heal them right up. Being that you are immunosuppressed you are going to be more prone to all types of viruses and infections. I started getting sores in the corners of my mouth when I started on remicade years ago and I also started getting cankers during flares. My doctor told me that it was an external manifestation of the disease.
If you do have herpes, it is really important to find out if you have type 1 or type 2. Both are contagious but have different characteristics as to what part of the body they establish latency and which part of the body they typically affect. If you have type 2 or the type typically associated with being transmitted through sexual relationships, there are a lot more people out there than you think with the same situation. In the U.S. 1 in 4 people have genital herpes and only about half of those show active symptoms.(another reason to practice safe sex and know those that you choose to have intimate relations with) There are plenty of people who also have partners with herpes and they do not. One of my very best friends married a girl who had herpes. She had only been with one partner but her first husband had been sleeping around with multiple partners and gave it to her. Before they got married she told him how much she loved him and that she understood if he did not want to be with her because she had herpes. She told him the situation and I would be lying if I told you he was not confused on what to do. He took some time and thought about what he should do because most people would probably not even consider the risk of contracting herpes but he was in love with her. He told her that he would do whatever it took to be with her and they even went and spoke with a doctor about how to avoid his contraction of the virus. Now 6 years and 3 kids later neither he or any of their children have herpes. All of the children were born through c section and I am the only friend that knows about the herpes situation. Nobody else needed to know and the only reason I know is because we are like brothers and he came to me for advice. There are also dating websites specifically for people with hsv-1 and 2.
As for taking valtrex I can't see why your primary care physician can't prescribe it for you. Your PCP should probably be the one that is managing your virus since they deal with it a lot more than your G.I. You mentioned that you get mouth cold sores, but do you get them other places.(not trying to be too personal and don't need a description where) Do you get shingles too? If you are getting shingles with your outbreaks, you may want to talk to your pcp about getting on a medication like neurontin or lyrica to help with the painful symptoms. If you are getting them in other areas then there is a higher likelyhood it is hsv-2 but you should really be tested.

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/21/2010 1:05 PM (GMT -6)   
When I was first dx'd with the DD, I was doing a preceptorship with a family doc and I took some Valtrex for my cold sores...I was getting them quite often...and it seemed to help dramatically decrease the frequency of these things...

BTW, an FYI, research has shown that there may not be as much of a difference between type I and type II...that either strain can show up on the mucosal membranes, and that the orginal study determining the difference may have been flawed...

Valtrex is useful for many types of Herpesviridae, and though not specifically approved for these by the FDA, it is common to have them as off label use, including treatment of shingles(my father was rx'd this for his shingle by his FP)...

I hope that you find help soon...these sores can be very, very painful...

More on Herpesviridae en.wikipedia.org/wiki/Herpesviridae

Oh, and on Valtrex... en.wikipedia.org/wiki/Valtrex
"The earth laughs in flowers"

PV
Veteran Member


Date Joined May 2006
Total Posts : 1143
   Posted 8/21/2010 1:22 PM (GMT -6)   
My husband gets cold sores. We have a script for valtrex to be taken at the first sign of a coldsore. He doesn't take it preventatively, but if he feels one coming on, he takes 2gms in the morning and 2 gms at night, and it shortens the duration and the virulence of the outbreak. Most times, if he takes it early enough, it doesn't even form a blister.

He's never had any side effects from taking the valtrex. He's on 5mgs/kg of remicade every 8 weeks, and he's not having too much trouble with coldsore outbreaks - may 2-3 a year, which are controlled with Valtrex. Before he was on remicade, he'd get maybe 1 a year. So, a slight increase in the number of outbreaks, but for the most part, since he seems to be able to recognize when an outbreak is starting, he takes the valtrex and does fine.

I think Valtrex is pretty safe to take, from what I read before my husband started taking it, it has a good safety record. It really does work to keep the outbreaks short. And from what I read, taken preventatively, it keeps the number of outbreaks down too.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
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sooper
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Date Joined May 2003
Total Posts : 815
   Posted 8/21/2010 1:52 PM (GMT -6)   
Thank you so much everyone for all the replies! I feel a lot better about the siutation from reading everyones replies. Greatly appreciated. Right now I can just hope for the best. Seems to be a safe bet I can take the pills. So thats what I will totally be doing... Just have to get in touch with someone hopefully sooner than later and hope that these things mess off!!! a couple a year sure but every other month is ridiculous.
 
 
 
 
P.S whoever asked I have never had a sore on my unit haha. Who knows maybe im one of those 1 in whatever who have it and doesnt know. But there def has never been an outbreak down there. I'm pretty sure my mom said they determined I had HSV1 when I was under 10 years old.
 
Thanks again!!!

God help us all, please, already.

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 8/22/2010 1:36 AM (GMT -6)   
Just to be clear, I specifically mentioned that I did not need a description where you had other sores and did not mention your junk. haha That is the last time I try and respond to a cold sores post. I was actuallly wondering if you get them on your eyes or hands too but I can see how you may take it as that. It is all good.

kazbern
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Date Joined May 2010
Total Posts : 7086
   Posted 8/22/2010 10:15 AM (GMT -6)   
I love acyclovir for herpes on my lips. But you know what else really, really helps prevent them? Using an SPF 15 or better sunblock on your lips and face. You can find a lot of lip balms with sunblock in them.

I mostly use Zovirax on my lips. I had shingles a few years ago and took Valtrex and I think I'd take the pill again rather that use Zovirax if I got another outbreak on my mouth - the maintenance of the zovirax (every 4 hours for 7 days, blech) is just too hard.

Just like with every other virus, being healthy and well-rested is a good preventative tip. If you're taking an immunosuppressant, that has got to make things very frustrating. I'm sure you are not the first patient to have active herpes while on imuran - talk to your GI!
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

sooper
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Date Joined May 2003
Total Posts : 815
   Posted 8/25/2010 10:40 PM (GMT -6)   
No worries! and I certainly didnt mean haha in an offense of way. Herpes anywhere are not funny


I start valtrex monday

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 8/25/2010 11:03 PM (GMT -6)   
Sooper, anything including herpes can be funny. If you can't laugh at yourself or your situation then what can you laugh at. Everytime we see a valtrex commercial, my wife always says that she wants herpes so she can get on valtrex because they are always kayaking or biking or having fun. Anything can be funny but good luck with the med and I hope that it works for you.

Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 8/26/2010 12:12 AM (GMT -6)   
Hi, sorry about the recurrent cold sores.
 
My little sister got herpes (vaginal) and she was very young when she got it ( 14 or 15). She got outbreaks more than once a month, and the 2 drugs used to treat it , neither worked. (I think called Valtrex and Famvir)? I went online to check things out because of the deperate cries for help from my sister.
 
I found a natural remedy, that had good revews. I thought it sounded too good to be true honestly.. but since there was no other option I could find, I purchsed it for her. it cleared up the herpes like magic! It actually started healing within MINUTES of being applied. She does not tell anyone bc she does not want anyone to know she has herpes, but I want to shout it from the rooftops becasue it seems most people don't know about it.. and it works SO great. Also WAY cheaper than herpes meds and lasts a very long time.
 
I looked on their website and it also heals type 1 and type 2 so would help for cold sores.
The only drawbak is it has a smell. Kind of an herbal smell (not offensive though). http://fonoils.com/hbalm.html
 
 
This WILL work- I swear. I have nothing to gain by suggesting it.
Hope your sores clear for good, soon.

njmom
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Date Joined Apr 2006
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   Posted 8/27/2010 12:38 AM (GMT -6)   
My cold sores seem to be triggered mainly by sunlight...it takes just 15 minutes on a sunny day to get one that shows up later that day or the next...so before going outside, even briefly, I religiously put sunblock all around and on my mouth.
 
OJ seems to be a trigger, too, but not nearly as bad as sun. 
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

Not2Spunky
Regular Member


Date Joined Feb 2008
Total Posts : 151
   Posted 8/27/2010 11:28 AM (GMT -6)   
Hello, the only difference between Hsv1 and HSV 2 is HSV 2 is below the waist and HSV 1 is above the waist. My husband get the cold sore around his lips and has taken Valtrex for years. He tried the acylovair but it did not help at all. I have ask the Dr several times about his long term use of it and he says it is fine. AS I still worry about it. I am going to get of the herbal remedy that Taa reccommended, it looks to be pretty good. I know how you feel as my husband gets real imbarrassed and does not want to go out of the house.

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/27/2010 1:29 PM (GMT -6)   
Not2Spunky...no, that is not the difference...it is actually based on a serotyping en.wikipedia.org/wiki/Herpes_simplex ...and both are spread via close contact on the mucosal membranes...

And the research about one type being the "sexual" was found to be later incorrect(the original study was based on too small a population, and based on a very small geographic location)...they have since done larger studies and found that either type can occur on the lips or in the genital area...and that with any form, you should be careful not to spread it to others when there are vesicles...

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 8/27/2010 11:22 PM (GMT -6)   
Hi, I've had cold sores since early elementary school when the only treatment was suffering in silence - and having sores that covered every inch of my upper and lower lip- couldn't even talk or eat. Not so bad now as an adult, in the recent past appeared monthly with my cycle. Taking Valtrex halts and significantly improves my pain, sore development and healing time so I won't give it up, always carry it with me! As a side bar: one of the reasons my GI was so very grumpy was on the intake form I didn't include cold sores cause I didn't have an outbreak. I think by then the gi dude was ready to pull his hair out . . .oh wait, its already gone!

sooper
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Date Joined May 2003
Total Posts : 815
   Posted 8/28/2010 5:44 PM (GMT -6)   
Becoming undone - What I thought was real bad was my friend she also gets cold sores BUT she didn't think it could be passed to genitalia! Cause it was just hsv1
God help us all, please, already.

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/28/2010 8:23 PM (GMT -6)   
Sooper, Oh lordy! shocked made me want to cross my legs (and I'm not a dude!)...I really hope she was careful with her BF's...me, I don't even kiss hubby when I have an outbreak (much less anything else) and I'm very careful when I touch my own mouth (to apply Abreva or such) that I wash my hands...I don't want to spread it anywhere else on myself... nono

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 8/30/2010 2:06 PM (GMT -6)   
Try taking L-lysine. You can take them to prevent as well and then higher doses to cut your healing time. I rarely get them but when I do L-lysine is the only thing (including trying an Rx) that has ever helped.

doorain77
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 3/4/2012 10:08 PM (GMT -6)   
You’re not alone…my doctor said, most cold sores are a result of the herpes simplex virus that some people harbor, which crops up as an outbreak or "episode" from time to time, usually from stress and many times from too much sun. But The healthier we keep ourselves, the stronger our immune systems, and the less likely we are to have an outbreak. As for reducing the frequency of it, try hsv-zero when you start feeling itchy…when it’s already get you, hsv-zero can reduce healing time to well under 5 days.

keepingfaith
Regular Member


Date Joined Nov 2011
Total Posts : 360
   Posted 3/4/2012 11:15 PM (GMT -6)   
I got my first cold sore ever avout 2 weeks ago & got a prescription for zovirax(the capsules) & it has helped clear it up fast! My pcp wrote for me to take it 3 times a day(which isn't hard to add to the routine. Crohnies already take a lot of meds as it is) and I've used that in combo with LypSyl Extreme Cold Sore Relief & Zilactin that I rub on it.

Zovirax comes in creams too I guess like Kazbern stated.

I feel the embarassment. Except I just feel embarassed by how nasty it looks. It's on the lip so even if I tryed to hide it with makeup, it still would be visible. I'm known as the 'good girl' at school & feel too uncomfortable holding hands with guys, much less having sex. My doctor is guessing it's just a response from the Humira/Crohn's or my nutritional defficencies..
Current medicine:Humira, Apriso,Zantac, Prilosec, Probiotics, Folic acid, B-12, Zinc supplements, miralax, Nortriptyline, tramadol, phenergan, zofran, lortab, flexeril.
Previous meds:
- Asacol
-Amitriptyline
- Flagyl
-Hydrocortisone suppositorys
-Prednisone(steroid refractory)
- Cantasa suppository
-Remicade( Had reactions/no benefits ):
In current flare since: Feb 2011
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