Anyone experience worsening of symptoms after staring acyclovir?

[maggie3]

I just started taking acyclovir a few days ago, now been on it for 4 days. I have had a severe worsening of symptoms. Probably the worst I have felt since getting ill.

Does anyone else have experience with this? Could this be due to the acyclovir? Is it some sort of die off reaction?

 

[i-lava-u]

I had horrible worsened "flu like" feelings on Acyclovir and it gave me horrible digestive issues, same on Valacyclovir. I took Valacyclovir for 1 year and Acyclovir for 3-4 months. The digestive issues worse on Acyclovir and never eased up. I had no noticeable improvements on Valacyclovir so discontinued as insurance did not cover at the time.

I now take Famvir instead and did have the same "flu like" worsening at first but not as bad as others, but, no digestive issues.

I have been taking Famvir for a couple of years now?? I think (give or take a few months) and I have zero side effects now.

The extra "flu like" effect wore off after about 3-4 weeks with each of the 3 meds. but was the worst on Valacyclovir, for me.

I take it for CEBV

 

[maggie3]

I had horrible worsened "flu like" feelings on Acyclovir and it gave me horrible digestive issues, same on Valacyclovir.

I now take Famvir and did have the same "flu like" worsening at first but not as bad as others, but, no digestive issues.

I have been taking Famvir for a couple of years now?? I think (give or take a few months) and I have zero side effects now.

The extra "flu like" effect wore off after about 3-4 weeks

Ahh yes @i-lava-u , my digestion has been horrible since I started taking it and the past two days I have completely lost my appetite. I guess I will just have to see if this continues or not and maybe ill have to switch to a different type at some point.

 

[Hip]

Famvir has similar potency to acyclovir and Valtrex, and targets the same viruses, but is often better tolerated. It's more expensive though.

 

[i-lava-u]

My insurance now covers Famvir so affordable for me ($10 a month!). Actually, my insurance now finally also covers Valacyclovir too for same price, but I had to pay out of pocket at the time when I tried it.

@maggie3 I think it might be some additive in the medication or a dye, not the medication itself? At least, that's what I thought it felt like as I am sensitive to other foods/additives anyway. Felt similar. Is this a med. you could get/try from a compounding pharmacy? Maybe worth a try without extra additives if digestive symptoms don't ease up?

 

[maggie3]

@i-lava-u I think its definitely worth bringing up trying Famvir with my doctor if I do not get any relief from these worsening of symptoms or my appetite does no return. Could be a good alternative for me

 

[i-lava-u]

@maggie3 I hope you find the right medication that works for you soon. The added symptoms from taking a medication that is supposed to help ease up symptoms is no fun!

 

[ilivewithcfs]

Hi, everyone! I have some questions regarding bad reaction to acyclovir.
I'll start from the beginning.

Approximately 3 years ago I found some studies, that showed, that valacyclovir can help PWME. So i started taking it. I started with a full dosage right away. Initially I had a great experience with it, I didn't get side effects and gradually was getting better and better. About 2 months into my treatment I started to get insomnia, which resolved itself, after I had stopped taking Valacyclovir. Overall after this treatment about 25% of my symptoms went away, which is a big deal. This improvement stuck with me till this day. I decided to take a little break and start to take this drug again, to deal with the rest of my symptoms. But I wasn't able to. Every time I took it, it gave me insomnia right away.

So I gave up antivirals for a while.

Recently, after 3-year break, I decided to give them another chance, I assume, my CFS is related to viral reactivation because of the fact, that I've had such a massive progress on antivirals.

Couple of months ago I started andrographis, I had a small improvement with no side effects. Overall it's a positive experience. Then I came across this study, which showed synergistic affects of andrographis and acyclovir, so I decided to add acyclovir and see what happens. I got insomnia right away. Tried to take valacyclovir- same thing. Insomnia right away.

What the hell is going on? Is it Herx? Is it neurotoxicity of acyclovir? What should I do? Give up? Start low and go slow? Or push through the symptoms?

I'm asking here, because I have no one else to guide me. Doctors I've seen don't know,what CFS is. Any help will be appreciated.

 

[lyran]

@ilivewithcfs Could you try taking half the dose of Acyclovir to see if that still causes insomnia? To me it seems that it somehow stimulates you, maybe your nervous system?

 

[ilivewithcfs]

@ilivewithcfs Could you try taking half the dose of Acyclovir to see if that still causes insomnia? To me it seems that it somehow stimulates you, maybe your nervous system?

Yeah, I lean towards lowering the dosage and seeing what happens. Seems reasonable. I still have trouble understanding why this drug didn't stimulate me initially, but started after 2 months.