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Crohn's Disease Forum » Treatment » Immunosuppressants and cold sores


01-10-2011, 06:41 AM   #1
littlemissh
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Immunosuppressants and cold sores

Just starting azathioprine today. Doing some reading and it says that if you get cold sores (herpes simplex ) whilst on immunosuppressants that oral acyclovir should be considered at he time of symptoms as there is a risk of disseminated infections (yikes-sounds nasty). I get them all the time but don't want more meds unless necessary.

Should be considered not a helpful remark...anyone out there had cold sores and on immunosuppressants - were you given oral antivirals? (like acyclovir/zovirax /famvir etc)
01-10-2011, 01:05 PM   #2
Lisa
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I get cold sores, but have never been told to take anything 'special' - I have Zovirax creme that I use (when I remember where I left it!)...otherwise just something like Carmex is all I use.....

The last time I had a nasty cold sore 'flare' was when I got strep the 1st time this past spring - went to urgent care for the strep (was told it wasn't lol).....next morning woke up with my mouth/nose COVERED in cold sores.....the 2nd strep infection i had I didn't break out in sores.....go figure.....
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01-10-2011, 01:30 PM   #3
littlemissh
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Face covered in them..so perhaps oral antiviral is sensible then ? If not I shall look forward to looking like nanny McPhee !
01-10-2011, 01:53 PM   #4
Lisa
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Are you saying your whole face is covered in them? That doesn't sound typical of cold sores.....

If/when I get more than one or two, I will call up my doc for more zovirax, as that does seem to take at least a couple of days off the healing process.....not sure how the oral vs. topical compares.....
01-10-2011, 01:59 PM   #5
Domsmom
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Are you sure it's not shingles? They can have similar characteristics.
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01-10-2011, 02:16 PM   #6
littlemissh
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lol- I meant it sounded like your face was covered with them !! I haven't got any at the moment.just thinking ahead as I have them several times a year since a child.
01-10-2011, 06:16 PM   #7
Creepy Lurker
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You can actually get an intravenous antiviral if the creams aren't working.
I used to get them pretty frequently during my azathioprine days, and always had the option open to me.

I don't seem to get them as much since moving on to infliximab.
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01-10-2011, 06:19 PM   #8
Lisa
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ah - ok! lol.....I had them all around my nose and my lips - the mucous membranes.....was one of hte WORST outbreaks I had had in YEARS!..... the term Stomatitis comes to mind as I have had outbreaks invoving the gums too in the past.....

I'm not sure about the frequency since being on remicade - I actually just had a mild one about 2 weeks ago - no prescription meds used on it, it never really turned into amything major.....
01-11-2011, 11:49 AM   #9
Astra
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Here's a tip for you!

The virus re-activates when your defences are depleted, so get plenty of sleep and eat a healthy diet (hard I know!)
Many sufferers find foods high in the amino acid arginine - found in nuts, seeds, chocolate and caffeine - can trigger an attack, while another amino acid, lysine - found in dairy, fish, lean meat and eggs - seems to protect against cold sores.
Take a lysine supplement availabel from natural health stores and keep stress levels under control.
Try Eco Lips Medicinal Balm (www.bathandunwind.com) which contains lysine and lemon balm, or try drinking lemon balm tea as well, as this may help lift fatigue!
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01-11-2011, 12:13 PM   #10
littlemissh
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Thanks Joan, I have noted my triggers are stress which would fit with depleted defences. My main trigger is dry lips so will definately try the Eco Lips Balm..never seen it ..will have to go search.
01-11-2011, 02:15 PM   #11
Astra
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Both of my kids and ex hubby have it, it's no fun!
Another trigger for them is wind and sun, and they always break out when we go abroad for holidays!
01-12-2011, 12:22 PM   #12
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I just got a prescription for Valtrax (have been on it in the past as needed)...since I also just started Imuran/Azathioprine. I'm hoping they don't come back. I remember in highschool having one with one inch diameter..and I'm not joking. I remember lying and telling people I had an allergic reaction to something :-).
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01-12-2011, 12:28 PM   #13
littlemissh
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Erika, Did your gastro recommend it when you started imuran?
How's it going with the imuran for you, I've only had 2 doses so far.
01-12-2011, 12:40 PM   #14
ErikaHouston
 
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Erika, Did your gastro recommend it when you started imuran?
How's it going with the imuran for you, I've only had 2 doses so far.
My Gastro didn't recommend it as I hadn't even thought about that when I met with her last. It was when I started researching all of the side effects that I saw that and thought I'd be proactive. I just happened to be at dermatologist getting my regular skin check (since I've had Melanoma) and asked her for a new prescription and told her why. Since it's an anti-viral it's totally different and doesn't interact with the other drugs. The pharmacist just told me to not take them at the same exact time. Your GI could also write you a prescription to have on hand. You have to take it as soon as you feel tingling that's why I wanted it on hand.

So far I'm ok on the Imuran. I have lost my appetite and feel slightly nauseous in the morning, if I didn't know better I'd think I was pregnant (I'm NOT!!!...just feels the same). I've heard it takes a little while to get used to it so I'm giving it time. Is your urine bright yellow after you take it? Mine looks like a yellow highlighter!
01-12-2011, 02:42 PM   #15
littlemissh
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What dose did your nausea start-was it when you first started ? I am on 25mg only for this first week and so far no nausea but I guess may occur as dose increases. I think he plans on 100mg which would be 2 and a bit mg/kg.
01-12-2011, 02:45 PM   #16
ErikaHouston
 
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What dose did your nausea start-was it when you first started ? I am on 25mg only for this first week and so far no nausea but I guess may occur as dose increases. I think he plans on 100mg which would be 2 and a bit mg/kg.
Wow, my Dr. has me on 150mg. I'm 5'9 and 145lbs (sorry don't know the conversion!) so maybe that is why? Are you petite?
01-12-2011, 03:18 PM   #17
littlemissh
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I am very underweight at the moment . My weight is 43.5 kg (95lb) at 5ft 6.5 which gives me a BMI of something silly like 15.

145lb is 65kg.So you are on a similar dose per kg that I will end up on. Did you start at 150mg?
01-12-2011, 03:33 PM   #18
ErikaHouston
 
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I am very underweight at the moment . My weight is 43.5 kg (95lb) at 5ft 6.5 which gives me a BMI of something silly like 15.

145lb is 65kg.So you are on a similar dose per kg that I will end up on. Did you start at 150mg?
Yes, started at 150 from the get go. I'm not sure what my goal dosage is. Will have to ask next appt.
01-13-2011, 02:39 AM   #19
littlemissh
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The usual maintenance dose is 2.0 - 2.5 mg /kg. I think the idea of starting at a low dose and working up over a couple of weeks is to minimise side effects. Though on the down side will take longer to work I guess.
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