I was diagnosed in June 2019 with ET JAK 2 I am on Hydroxy and baby aspirin. Have any of you suffered with cold sores on mouth I am finding it very painful and I feel very down about it. I have called my surgery and have been prescribed Aciclovir 3 times a day for 5 days I am hoping they work as once one sore has gone another one appears. Has anyone on this site suffered from this it would be nice to hear your story
Thanks 🤔
Yes, mostly during the first winter after being prescribed hydroxycarbamide in 2013. The MPN clinic told me to ask my GP for a prophylactic dose of Acyclovir for the winter months so I took if for maybe one or two years, just during those months and it worked. I was also given an Acyclovir cream too but then rarely needed it.
I’m hardly ever bothered by cold sores now despite increased dose of HU and I think it has a lot to do with retiring in 2016 from a busy, stressful and crowded workspace where I was constantly exposed to colds and winter bugs generally.
Hope that helps a little.
That has put my mind at ease thank you I hope they work that well for me x
This may sound bizarre but I often suffer from sore corners of the mouth which I assume are incipient cold sores, and was recommended in Boots to use Daktarin Activ athletes foot cream! And it seems to work - whenever I feel it starting to get sore this seems to nip it in the bud...... Maybe worth a try?
Hello, I experience them occasionally, but can stop them using the same cream, acyclovir. The trick is to use it as soon as you recognise the tingling of onset.Secondly use a good sun stick as this can pretty much prevent them. I would not recommend antifungal cream.As a retired dentist I suggest you a have a word with your dentist, he will probably agree.
Yes I do catch them when they tingle but at the moment I have an outbreak never experienced this before so wondered if it is my immune system while taking Hydroxy although I do take vitaminB every day but I thank you for your reply x
Yes, had them since I was a little girl. I can count on getting one at the absolute worst times, like a wedding or Christmas. But the biggest trigger for me is the change of seasons, especially warm to cold. I hate them so much! I get them much less now that I have a prescription for acyclovir in pill form. Also my dermatologist gave me a prescription creme called xerese which stops the blisters from forming immediately. Most times, it’s all I need to stop it in its tracks.
Thank you Bjay22 for your reply it all helps x
I had canker sores when I was younger, but they disappeared for nearly 20 years, until I went back on hydroxyurea. The canker sores returned, I started getting oral ulcers,. I also developed thrush and leukoplakia. My tongue turned white as snow. These adverse effects continued despite reducing the dose to sub-therapeutic levels. The effects mostly resolved after I discontinued the HU, but the surface of my tongue was permanently altered (now have geographic tongue).
The good news is that there are other treatment options should you not be able to tolerate the HU. Please let us know how things turn out.
I have had the same problem (recurrent apthous stomatitis) for 7 months but i am not on amy drug.... I have solved it (by 90% )with homeopathy.
Yes 2weeks ago I had a lip full of sores partly healing the filling up with blood very painful used corsadyl and let it trickle over my lip to heal them the blood would be all over my face in the morning it was nearly 2weeks before the went
I’ve was lucky I didn’t I did have mouth ulcers 5 at the same time but all small and not really that bothersome. I do hope you can resolve things soon x
Thank you Wyebird they are getting better now x
Hi Tilly rose, pre MPN I always had cold sores through out the year. I added more tomatoes to my diet and ever since I have never had a cold sore. Someone did say to me a while afterwards the name of what’s in them that helps, but I’m afraid I can’t remember.
Ah thank you anyway I can try it x
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