No PEM after weeks on Valacyclovir

[Diwi9]

Hi everyone -

I shared on another thread a few weeks ago that that I have been steadily improving on Valtrex (valacyclovir), so much so that I can be on my feet most of the day and even do some aerobic exercise without crashing, including some aerobic exercise where I was really pushing and by all accounts should have crashed hard.

I am still dealing with symptoms, but am still experiencing improvements over time.

I am not on any particular supplements at this time, but take thyroid meds.

I first trialled Valtrex in early 2017. Dr. Chia put me on it. I had a noticeable improvement at the three week mark. I was still pretty sick then. Dr. Chheda then switched me to Famvir. I didn't not notice a difference. Later we trialled Valcyte with no effect. At that time I went off all anti-virals.

This past year has been incredibly tough. Sans a few good days, I spent most of the past year in bed (20-22 hours). Dr. Chheda restarted me on valacyclovir (1g three times per day). It did not take long before I started to feel the benefits. I have been on it for just over a month now and I am improving daily.

Main improvements: increased energy, no PEM, improved sleep regulation, significantly less arm numbness, inflammation/flares in neck/upper back region.

Continued symptoms: difficulty in the mornings, dysautonomia, problems falling asleep, significant bodywide joint/muscle pain (exacerbated by increased exertion, lots of tight/knotty muscles), frequent sore throats, continued visual problems (although less severe with things like photophobia and afterglow), cognitive problems (working memory, although attention and concentration have improved).

New symptoms: some occasional skin break-outs bodywide that are not "normal" acne.

My labs were positive for the following past infections, some possible candidates for reactivation: Coxsackie B4, Echovirus (30?), HHV-6, VZV, and EBV. I am negative for HSV 1 and 2, and have not been tested for HHV-7. My Lyme labs indicated that I likely had exposure to Ehrlichia and possibly Babesia. I did one course of doxycycline through the Stanford ME/CFS clinic with no improvements (but it did cause significant skin irritation).

For some history, I became ill in 2009 after a viral infection and started to improve around 2011, going into a quasi-remission. I relapsed hard in 2016 after a viral infection and developed moderate ME/CFS with significant cognitive difficulties.

Insurance does not want to cover this treatment, even though it is the first treatment to have such a dramatic and long-lasting impact. I am currently in appeals. My prescription is about $125/mo. out-of-pocket.

 

[Martin aka paused||M.E.]

Hi everyone -

I shared on another thread a few weeks ago that that I have been steadily improving on Valtrex (valacyclovir), so much so that I can be on my feet most of the day and even do some aerobic exercise without crashing, including some aerobic exercise where I was really pushing and by all accounts should have crashed hard.

I am still dealing with symptoms, but am still experiencing improvements over time.

I am not on any particular supplements at this time, but take thyroid meds.

I first trialled Valtrex in early 2017. Dr. Chia put me on it. I had a noticeable improvement at the three week mark. I was still pretty sick then. Dr. Chheda then switched me to Famvir. I didn't not notice a difference. Later we trialled Valcyte with no effect. At that time I went off all anti-virals.

This past year has been incredibly tough. Sans a few good days, I spent most of the past year in bed (20-22 hours). Dr. Chheda restarted me on valacyclovir (1g three times per day). It did not take long before I started to feel the benefits. I have been on it for just over a month now and I am improving daily.

Main improvements: increased energy, no PEM, improved sleep regulation, significantly less arm numbness, inflammation/flares in neck/upper back region.

Continued symptoms: difficulty in the mornings, dysautonomia, problems falling asleep, significant bodywide joint/muscle pain (exacerbated by increased exertion, lots of tight/knotty muscles), frequent sore throats, continued visual problems (although less severe with things like photophobia and afterglow), cognitive problems (working memory, although attention and concentration have improved).

New symptoms: some occasional skin break-outs bodywide that are not "normal" acne.

My labs were positive for the following past infections, some possible candidates for reactivation: Coxsackie B4, Echovirus (30?), HHV-6, VZV, and EBV. I am negative for HSV 1 and 2, and have not been tested for HHV-7. My Lyme labs indicated that I likely had exposure to Ehrlichia and possibly Babesia. I did one course of doxycycline through the Stanford ME/CFS clinic with no improvements (but it did cause significant skin irritation).

For some history, I became ill in 2009 after a viral infection and started to improve around 2011, going into a quasi-remission. I relapsed hard in 2016 after a viral infection and developed moderate ME/CFS with significant cognitive difficulties.

Insurance does not want to cover this treatment, even though it is the first treatment to have such a dramatic and long-lasting impact. I am currently in appeals. My prescription is about $125/mo. out-of-pocket.

That’s so great! I hope you will experience some sort of remission!!!

 

[Judee]

Insurance does not want to cover this treatment, even though it is the first treatment to have such a dramatic and long-lasting impact. I am currently in appeals. My prescription is about $125/mo. out-of-pocket.

My sister told me about a place called Blink Health for discounts on prescriptions. Just in case your appeal doesn't go through, here are their prices (for my area anyway) for 30 - 1gm pills: https://www.blinkhealth.com/valtrex

This is also the generic version so I don't know if that would be helpful to you.

Edit: She has used this and saved money on her family's prescriptions.

**I am not affiliated in any way with Blink Health.

Edit #2: I clicked on the page again and noticed it defaults back to the 500mg pills' price. So you just have to change the dose at the top to get the 1gm pill price. Sorry about that.

 

[Diwi9]

@Judee - That's a great option. I plugged in my required dosage and it's $63.80, so half of what my pharmacy is charging. Thank you!

 

[nerd]

Thanks for sharing. Remember to drink regularly.

I currently take Valaciclovir as well but only 500mg per day for now, without significant improvements. Actually, I feel worse, but this can have many reasons. I'm convinced that viruses play a role. The issue is that Valaciclovir doesn't cover all viruses.

 

[Diwi9]

Thanks for sharing. Remember to drink regularly.

I currently take Valaciclovir as well but only 500mg per day for now, without significant improvements. Actually, I feel worse, but this can have many reasons. I'm convinced that viruses play a role. The issue is that Valaciclovir doesn't cover all viruses.

I believe Chia originally selected Valtrex because of VZV involvement. This is a treatment for me, but not a cure. There is still some sort of muscle and connective tissue pathology happening. But, the Valtrex has removed some sort of limiter on energy and overall my body isn't in some inflammatory response state.

 

[Mary]

I shared on another thread a few weeks ago that that I have been steadily improving on Valtrex (valacyclovir), so much so that I can be on my feet most of the day and even do some aerobic exercise without crashing, including some aerobic exercise where I was really pushing and by all accounts should have crashed hard.

Wow - I'm so glad to hear this for you! I didn't know you had been basically bedridden the past year - that's beyond rough!

One other option about a valacyclovir prescription - have you looked into GoodRx? They're even cheaper than Blink Health for 90 - 1 gram tablets, depending on what pharmacy you go to: Valtrex Prices, Coupons & Savings Tips - GoodRx
This is for the generic version. The name brand price is out sight!

ETA: I've used GoodRX for several months for NP thyroid and save over half the cost.

ETA again: I've been going to Walgreen's and they always charged me a $7 or $8 more than the coupon I found on-line, I asked them about it and they just said that's the way it is. But I asked them again the next time I went there and the person I dealt with this time asked to see the coupon on my phone, she saw it, and then charged me the lower price. She couldn't really explain why they hadn't done that before.

 

[Pyrrhus]

I first trialled Valtrex in early 2017. Dr. Chia put me on it. I had a noticeable improvement at the three week mark. I was still pretty sick then.

Dr. Chheda restarted me on valacyclovir (1g three times per day). It did not take long before I started to feel the benefits. I have been on it for just over a month now and I am improving daily.

What dosage did Dr. Chia originally prescribe in 2017? Was it the same 1g three times a day?

I ask because many people have worse results when taking sub-standard doses than they do when taking the standard dosages.

For me, personally, 1g three times a day was not sufficient to stop my shingles outbreaks. Only when it was raised to 1g four times a day did my shingles outbreaks stop completely.

 

[Diwi9]

What dosage did Dr. Chia originally prescribe in 2017? Was it the same 1g three times a day?

I ask because many people have worse results when taking sub-standard doses than they do when taking the standard dosages.

Good question, @Pyrrhus. I just looked up my old record and I was only taking 1g two times per day. Interesting that I'm having much more significant improvement on 1g three times per day.

I forgot to mention above that a few months after my first course of valacyclovir, Dr. Chia also had me trial Tenofovir. I had no response to the anti-retroviral and discontinued.

 

[Diwi9]

In the hope that my experience will help even one other person out there dealing with ME/CFS, I am sharing about my experience. I am conscious of the fact that one person improving can bring mixed feelings for the vast majority of people dealing with ME/CFS without improvement or even worsening. My sharing is not intended to rub salt in a wound.

At this point, I am doing aerobic exercise and pretty intense. I am still not crashing. Yesterday, I hiked over an hour with my husband and dog (a dream I lived over and over in my mind for years). I also went on my stationary bike and rowing machine. Today, I walked the dog for 30 minutes, roller skated for 30 minutes, went on the stationary bike for 20 minutes, and lifted some weights. I also drove a car after not having driven in probably over a year.

At this point, I am considering myself in partial remission. I still have trepidation about making plans for the future, but I would love to return to work, at least part-time ,if my condition holds.

 

[Jennifer J]

Happy for you @Diwi9! That's wonderul you're able to do all this. I find it encouraging even though my situation is so different. I hope your condition holds. Thank you for sharing and please if up to it keep us posted.

 

[Sushi]

At this point, I am doing aerobic exercise and pretty intense. I am still not crashing. Yesterday, I hiked over an hour with my husband and dog (a dream I lived over and over in my mind for years). I also went on my stationary bike and rowing machine. Today, I walked the dog for 30 minutes, roller skated for 30 minutes, went on the stationary bike for 20 minutes, and lifted some weights. I also drove a car after not having driven in probably over a year.

I am so, so happy for you! When I took Valtrex for shingles it was only 500 mg twice a day and it had no effect on my ME/CFS symptoms, so I assumed that it wouldn’t help. Maybe the key is the dosing!

 

[Diwi9]

@Jennifer J - Thank you for your kind words. I hope your condition improves. I don't know what is to come for me, but I will take every good day I got.

@Sushi - @Pyrrhus asked the question about my dosing above and it really floored me that one additional gram might cause such a dramatic shift. One wonders how many have tried Valtrex (valacyclovir), but at too low of a dose to cause a true shift? This sort of research with dosage and trials should have been done, but there remains only a few studies showing efficacy. I am not alone in this experience. @Hip shared this thread with me about it. I also recently saw a comment on Health Rising from another person with ME/CFS who had an experience similar to mine.

 

[Diwi9]

Sad to report that I have had two days of PEM. It's not as severe as in the past, but PEM is PEM. The trigger was not over-exertion. It was an extremely stressful decision about a home purchase and placing a bid while my husband was out of town. I could actually feel the switch in my nervous system when the anxiety set in and I knew there would be consequences. I wish we had medical terms to describe some of the physical symptoms we experience. Anyway, it's been two rough days with sore throats, no energy, muscle weakness, and sensory issues. Yesterday and today, I have at least felt better in the evenings.

It's discouraging to have firm confirmation that the ME/CFS is still there, but anyone living with this knows how important any level of improvement is and I am not going to complain.

 

[hapl808]

Sorry to hear but thank you for the report. It is frustrating that outside of other people who experience similar levels of ME/CFS, there's no way to express the level of discomfort and debilitation from PEM.

 

[Timaca]

Insurance does not want to cover this treatment, even though it is the first treatment to have such a dramatic and long-lasting impact. I am currently in appeals. My prescription is about $125/mo. out-of-pocket.

Have you tried Good Rx? I use that for valacyclovir and it saves me a lot of money as my insurance won't cover it either because the prescribing doctor is not with my insurance plan.

 

[Timaca]

Sad to report that I have had two days of PEM. It's not as severe as in the past, but PEM is PEM. The trigger was not over-exertion. It was an extremely stressful decision about a home purchase and placing a bid while my husband was out of town. I could actually feel the switch in my nervous system when the anxiety set in and I knew there would be consequences. I wish we had medical terms to describe some of the physical symptoms we experience. Anyway, it's been two rough days with sore throats, no energy, muscle weakness, and sensory issues. Yesterday and today, I have at least felt better in the evenings.

It's discouraging to have firm confirmation that the ME/CFS is still there, but anyone living with this knows how important any level of improvement is and I am not going to complain.

I'm sorry that you are having some PEM. What you said though was very interesting to me (actually a few things you said). First you talked about being stressed and then feeling your nervous system switching when you experienced anxiety. I think I have something like that going on also.... My "wired" feeling has been much less lately, and I wonder if it isn't some kind of stress response in my body. So I've been trying to focus on living in a state of calm. It seems to be helping. I've been much less "wired" lately, which I like better!!

The other thing I found interesting is that you found 1 gram 3x per day of valacyclovir helpful (and a lower dose wasn't). I also see Dr. Chheda and have a video consult this coming week. I'm going ask to come off the LDN (it hasn't done anything for me). I was considering also asking to reduce the valacyclovir that I'm on (500 mg twice a day). But maybe I will wait on that. Or if I try to reduce it, then go back up if I get worse.

I've gotten better in the last couple of years. I can hike for a couple of hours (even at 9,000 feet)--ride a bike, do exercise videos (I prefer 10 -15 minute increments) and do activities of daily living fine. I still have lots of symptoms, but now I think that they are really dysautonomia symptoms. I don't do as well in the heat as I do in cooler weather. And I'm eating more salt (my blood pressure is fine with more salt). Of course, some days are better than others, but I am way more active than I have been in a long time. And I am grateful.

Thanks for sharing, and keep sharing please. I hope you snap out of feeling poorly soon.

 

[Diwi9]

@Timaca - Thanks for the Good RX referral. I am going to look into cheaper out-of-pocket options as I'm sensing it's a waste of time dealing with my insurance. The plan I had last year folded and so I had to find a new plan.

I appreciate your commentary on my post about the nervous system. I tend to be super chill most of the time, but if my anxiety/nervous system gets activated...it just defaults to full-throttle. Luckily, this rarely happens. This disease has already made many of my worst fears come true and somehow I survived, so I bank on the likelihood despite how bad something may seem at a given moment, I will be able to deal with it.

I ditched LDN over a year ago. It helped early on and I had a strong reaction to it upfront. At the time, it was a Godsend. After a while, I didn't notice any continuing benefit from it. I trialled going on and off it a few times and then just stopped it altogether. Dr. Chheda still recommends it for anti-inflammatory purposes but as my illness is being managed by valacyclovir, I prefer to reduce the number of interventions so that I only need to take what is truly helping. LDN is a medication that I consider part of the toolkit should some elements relapse.

The ability to exercise really baffles me because it was such an obstacle. I have found that timing is important, basically only exercising when I feel okay. Also, I still have to give into a rest schedule. If I disrupt the rest schedule, it just makes me worse. But still odd that when I feel good, I can exercise without PEM. I live at 7,000ft, so we are both able to do so at elevation which is wild.

My best wishes to you!

 

[Timaca]

I live at 7,000ft, so we are both able to do so at elevation which is wild.

I live at 7000 feet also!!!
And I also rest when I need it (took a nap today).
Take care!! And I hope you feel better soon!

 

[IThinkImTurningJapanese]

I forgot to mention above that a few months after my first course of valacyclovir, Dr. Chia also had me trial Tenofovir. I had no response to the anti-retroviral and discontinued.

That's interesting.