Starting on Valtrex --feeling die-off -- any positive stories?

[el_squared]

Hi there,
I'm being seen at the CFS clinic at Stanford. They are starting me on Valtrex. I've only done a couple days and feel awful. Just wanted to hear from people if they have seen any improvement on Valtrex?

I did try it in 2015 and then switched to Famvir and then didn't last very long. I feel I didn't give it enough of a try then.

Looking for any positive stories related to antivirals in general.

thanks,
Laura

 

[ukxmrv]

Hi Laura,

Sorry you re suffering on Valtrex. My experience has been that Valtrex has helped with sore throats, swollen glands and an awful burning legs/lower spine I was getting at nights.

I'm in the UK and I've never been able to afford to buy the dose of Valtrex my private doctor wanted me on.

The good effects for me were quite quick i.e. within a week or so of starting the drug

At the start of taking Valtrex I didn't have any bad effects and I wonder if that is because you may be on a higher dose or something? The most I have ever taken is 2 x 500mg per day.

 

[StarChild56]

I'm sorry you aren't feeling well on Valtrex.

I believe Valtrex has helped me greatly. I've been taking it 3 months now. I started on 3G a day vut after a couple weeks and currently on 4G a day. I must let you know that I started a number of meds and supplements/OTC meds all around the same time, though.

In my case, I wnet feom being bed and recliner ridden, having to ALWAYS use wheelchair whenever I went out (really only for doctor appointments for the most part) to being able to use my walker fir shirt trips out; to being able to do some chores/cooking (with help and rests) and sone days be out in our family room and not in my bed.

So I have improved a lot, but am still very sick. I iften have to rest foe days after beibg active here and there. Right now I am in a small flare and sleep a lot, in bed a lot and in my recliner a lot. However, I had to get my flu shot (and the whole family did at the same time), 7 vials of blood drawn and a parent teacher conference on Monday. While my husband drive, I dis use my walker and as we were walking on the campus I wished I had my wheelchair as I was feeling malaise and exhaustion. Then Tuesday my husband and I went on a filedtrip with our son to a pumpkin farm. I was in my wheelchair, but we were gone for hours and it was difficult. I crashed.

My doctor said I would be on Valtrex for up to 6 months, but depends on symptoms and blood test results (just had some done Monday).

I hope you adjust to the Valtrex and it helps you, or that you find something else that does. Even though I am in a mini crash, my life is so much omproved since starting Valtrex (and the other meds).

Best wishes.

 

[StarChild56]

I'm sorry for all my typos. On my phone, vision is weird and too ill to go back and fix.

 

[2Cor.12:9]

Hi there,
I'm being seen at the CFS clinic at Stanford. They are starting me on Valtrex. I've only done a couple days and feel awful. Just wanted to hear from people if they have seen any improvement on Valtrex?

I did try it in 2015 and then switched to Famvir and then didn't last very long. I feel I didn't give it enough of a try then.

Looking for any positive stories related to antivirals in general.

thanks,
Laura

@el_squared I started on Valtrex 500 mg three times a day, 29 days ago. The first several days I didn't feel anything, then I felt just awful for a few days. After that I just felt much more fatigue than usual. I eventually cut back to 500 mg twice a day which helped a lot. Overall, the Valtrex now just makes my fatigue a bit worse, but I can tolerate it. I'm determined to stick with it for at least 4-6 months.


May I ask what dose did they put you on? I hope you can continue.

 

[Jessie 107]

Hi Laura,

Sorry you re suffering on Valtrex. My experience has been that Valtrex has helped with sore throats, swollen glands and an awful burning legs/lower spine I was getting at nights.

I'm in the UK and I've never been able to afford to buy the dose of Valtrex my private doctor wanted me on.

The good effects for me were quite quick i.e. within a week or so of starting the drug

At the start of taking Valtrex I didn't have any bad effects and I wonder if that is because you may be on a higher dose or something? The most I have ever taken is 2 x 500mg per day.

Hello,
I am interested in trying Valtrex myself, I am also in the UK.
Can you please give me some information about how to go about getting it.
Many thanks.

 

[ukxmrv]

Hello,
I am interested in trying Valtrex myself, I am also in the UK.
Can you please give me some information about how to go about getting it.
Many thanks.

Buy it over the internet. You will find a thread on good online chemists on this forum.

I use the Cipla brand from India.

An alternative would be to see a private doctor or a helpful consultant if you have one (rare).

Possibilities would be to see someone like Dr Bansal (Surrey) or Dr Murphy (Royal Free) or Dr Enlander (New York but comes to the UK - (tends to be London and Ireland) and discuss with them. Problem with seeing Bansal is that he prefers Acyclovir which I found useless. They may require you to have tests first and prove your case.

Know of one patient who has had a AV and Celebrex from their consultant after reading the FM research. Another patient has recurrent cold sores and has a script.

More UK patients may have other ideas and hints. If you want a doctor to prescribe it and you don't have an existing consultant happy to try things and no tests then it may be a huge problem to get an actual prescription. Took me years and I have tests.

 

[SueJohnPat]

My family Doctor precpscribed valtrex for me. Her reasoning was that Valtrex is used for cold sores and our issues are much more serious.

I used valtrex 500mg in conjunction with Celebrex 200mg dosed twice daily. This combo significantly reduced my fibromyalgia pain. I stopped it for about a year and plan to go on it again ( pain is back bad again)
Mold avoidance has helped me significanly but antivirals have also helped me greatly.
I have used valtrex intermittently for 2 years.

If my doctor refused to prescribe this I would order it . With cfs it is often so confusing at times. I don’t know what I am reacting to.

 

[Wonkmonk]

I am following the Valtrex protocol proposed by Dr Lerner since January (6 grams a day in my case) and I had some great improvements. Especially my joint pain in the hip region disappeared completely. Heat tolerance and heart palpitations also improved. I am still waiting for my energy levels to improve, so far I am still in bed most of the day.

So, I would say I am a responder and it is a success story although not as much as I had hoped (at least so far). I am definitely trying to continue for a few more months.

 

[bspg]

I am following the Valtrex protocol proposed by Dr Lerner since January (6 grams a day in my case) and I had some great improvements. Especially my joint pain in the hip region disappeared completely. Heat tolerance and heart palpitations also improved. I am still waiting for my energy levels to improve, so far I am still in bed most of the day.

So, I would say I am a responder and it is a success story although not as much as I had hoped (at least so far). I am definitely trying to continue for a few more months.

How long had you been taking valtrex when you started noticing these improvements?

 

[Tella]

@el_squared I started on Valtrex 500 mg three times a day, 29 days ago. The first several days I didn't feel anything, then I felt just awful for a few days. After that I just felt much more fatigue than usual. I eventually cut back to 500 mg twice a day which helped a lot. Overall, the Valtrex now just makes my fatigue a bit worse, but I can tolerate it. I'm determined to stick with it for at least 4-6 months.


May I ask what dose did they put you on? I hope you can continue.

Hey how r u now?

 

[Tella]

Hi Laura,

Sorry you re suffering on Valtrex. My experience has been that Valtrex has helped with sore throats, swollen glands and an awful burning legs/lower spine I was getting at nights.

I'm in the UK and I've never been able to afford to buy the dose of Valtrex my private doctor wanted me on.

The good effects for me were quite quick i.e. within a week or so of starting the drug

At the start of taking Valtrex I didn't have any bad effects and I wonder if that is because you may be on a higher dose or something? The most I have ever taken is 2 x 500mg per day.

Hey how r u now? Which doc did u use and how much do private prescriptions cost? Does it depend on how many pills u buy or is it a standard private prescription charge?

 

[Tella]

Hello,
I am interested in trying Valtrex myself, I am also in the UK.
Can you please give me some information about how to go about getting it.
Many thanks.

Hey how r u now?

 

[Tella]

My family Doctor precpscribed valtrex for me. Her reasoning was that Valtrex is used for cold sores and our issues are much more serious.

I used valtrex 500mg in conjunction with Celebrex 200mg dosed twice daily. This combo significantly reduced my fibromyalgia pain. I stopped it for about a year and plan to go on it again ( pain is back bad again)
Mold avoidance has helped me significanly but antivirals have also helped me greatly.
I have used valtrex intermittently for 2 years.

If my doctor refused to prescribe this I would order it . With cfs it is often so confusing at times. I don’t know what I am reacting to.

Hey how r u now?