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Started Valcyte today for EBV but have concerns

Messages
73
Was just prescribed Valcyte 900mg (450mg x2) in the morning by my PCP but I have concerns.

I’m currently on 1 gram of valacyclovir three times a day and have been since I had acute mono that caused my CFS. It knocked my mono out within a couple days but it comes back within 24 hours if I don’t take any within that time period. Not sure if this is mono or just an EBV flare but I get swollen tonsils, more malaise/worsening of CFS symptoms, 30+ mouth ulcers, and more. All goes away within a few days of starting back on Valacyclovir

My concern is worry that Valcyte may not be able to provide persistent viral suppression at this dose. I believe the half life is similar to Valacyclovir. I’m not sure if my doctor would increase my dose because he’s already going out of his way to prescribe this drug for me. I’ll do trial and error if I have to but I’d prefer to avoid a flare completely. 450mg once in the morning and once at night may be the best option for me but I’d like to hear some personal opinions before I try it.

Has anyone with a similar case tried valcyte and were able to avoid viral replication? Dose and what time of day did you take it?
 

Judee

Psalm 46:1-3
Messages
4,518
Location
Great Lakes
Did he give some reason for switching you esp since it sounds like the Valacyclovir was working well for you?
 
Messages
73
Did he give some reason for switching you esp since it sounds like the Valacyclovir was working well for you?
I asked him to let me try Valcyte because I’ve read it’s stronger against EBV. Valacyclovir helps with a lot of the symptoms but I just wonder if Valcyte would make me feel even better. Worth a shot
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Was just prescribed Valcyte 900mg (450mg x2) in the morning by my PCP but I have concerns.

I’m currently on 1 gram of valacyclovir three times a day and have been since I had acute mono that caused my CFS. It knocked my mono out within a couple days but it comes back within 24 hours if I don’t take any within that time period. Not sure if this is mono or just an EBV flare but I get swollen tonsils, more malaise/worsening of CFS symptoms, 30+ mouth ulcers, and more. All goes away within a few days of starting back on Valacyclovir

My concern is worry that Valcyte may not be able to provide persistent viral suppression at this dose. I believe the half life is similar to Valacyclovir. I’m not sure if my doctor would increase my dose because he’s already going out of his way to prescribe this drug for me. I’ll do trial and error if I have to but I’d prefer to avoid a flare completely. 450mg once in the morning and once at night may be the best option for me but I’d like to hear some personal opinions before I try it.

Has anyone with a similar case tried valcyte and were able to avoid viral replication? Dose and what time of day did you take it?

Since valtrex seemed helpful, have you and your dr considered running both valtrex and valcyte together??

From memory Dr Montoya started people with hhv6 on 900mg valcyte twice a day for 2-4 weeks than they'd drop to 450mg twice a day. I think there were many pts that struggled tolerating these initial high doses, so they ended up starting pts on lower doses and slowly worked the dose up.

I recall some pts during the initial years valcyte was used in cfsers who had high viral levels of ebv, cmv and hhv6. The valcyte would knock the cmv and hhv6 down but they would need to add valtrex or famvir for ebv. Not the case for everyone but seemed relatively common.
 
Messages
73
Since valtrex seemed helpful, have you and your dr considered running both valtrex and valcyte together??

From memory Dr Montoya started people with hhv6 on 900mg valcyte twice a day for 2-4 weeks than they'd drop to 450mg twice a day. I think there were many pts that struggled tolerating these initial high doses, so they ended up starting pts on lower doses and slowly worked the dose up.

I recall some pts during the initial years valcyte was used in cfsers who had high viral levels of ebv, cmv and hhv6. The valcyte would knock the cmv and hhv6 down but they would need to add valtrex or famvir for ebv. Not the case for everyone but seemed relatively common.
Thanks for the info. I have heard of some success stories with active EBV and Valcyte so I guess that’s why I’m so interested to try it. I don’t believe my doctor would be willing to let me try both drugs at once so I’m just hoping the Valcyte will knock down the EBV for me instead of Valtrex.

For me, it doesn’t take months for me to notice a difference like some CFS patients. I can tell if I’m having a viral reactiviation within 24 hrs so if I don’t get that feeling on valcyte I think I’ll just continue taking it alone ! Also, I can’t remember where I read this but I believe Valcyte may have more immune modulating properties than Valtrex and could even stimulate EBV cells apoptosis
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Thanks for the info. I have heard of some success stories with active EBV and Valcyte so I guess that’s why I’m so interested to try it. I don’t believe my doctor would be willing to let me try both drugs at once so I’m just hoping the Valcyte will knock down the EBV for me instead of Valtrex.

For me, it doesn’t take months for me to notice a difference like some CFS patients. I can tell if I’m having a viral reactiviation within 24 hrs so if I don’t get that feeling on valcyte I think I’ll just continue taking it alone ! Also, I can’t remember where I read this but I believe Valcyte may have more immune modulating properties than Valtrex and could even stimulate EBV cells apoptosis
Understand its worth a try for. I'm just regurgitating some antiviral history from the phoenix rising forums. One thing for sure is there's no black and white answer for everyone.
Good luck.
 
Messages
73
Update: felt a viral flare late last night about 16hrs after my last Valtrex dose. Seems as if Valcyte hasn’t started working yet. Took Valtrex last night and this morning to avoid the flare. Will continue doing this until Valcyte potentially stops the replication by itself
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
I took Valcyte back in 2008 for 10 months. I took 450 mg in the morning and 450 mg in the evening. I had many improvements that have lasted until this day. The main improvements were a great reduction in my headaches and a return to normal of my blood pressure. I was at 80/50 with a pulse of 50 pre Valcyte, and have had normal BP and pulse since.

I am very glad that I was able to get a prescription at the time and my only regret was not being able to continue after 10 months. My doctor felt it difficult to justify continuing the use of the drug and I understand that he was in uncharted territory back then.

I was at a conference that year and heard Dr. Lerner say that he kept his patients on Valcyte until they were cured. He said that he had one patient that had been on the drug for seven years.

I wish you the best of luck.
 
Messages
73
Update day 3. Valcyte 900mg in the morning. Took 1g Valtrex the night before but skipped this morning’s dose. Felt a mild flare coming about 20 hours after that so I took 1g Valtrex today as well. Valcyte MAY be working but not yet to the same level that Valtrex does for me. Will continue to stay on maintenance Valtrex dose

But maybe Valcyte just doesn’t suppress viral replication enough for me and that’s just how it’s going to be. Valtrex is the ONLY drug that has suppressed this virus so far. Famvir has failed in the past. No clue why my immune system won’t clear it :(
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
You need some patience with Valcyte, it took about two weeks before I noticed any change. The blood pressure changes took much longer, it was a slow steady improvement over the 10 months that I took it. I was on a blood pressure increaser medication that I weaned myself off of very slowly. It took about 8 months for my BP to get back to a normal range without medication.
 
Messages
73
You need some patience with Valcyte, it took about two weeks before I noticed any change. The blood pressure changes took much longer, it was a slow steady improvement over the 10 months that I took it. I was on a blood pressure increaser medication that I weaned myself off of very slowly. It took about 8 months for my BP to get back to a normal range without medication.
I understand but I have to have viral suppression or else I get very sick, pretty much mono all over again, and get worse long term. After a few weeks I’m going to have to choose between the Valcyte or Valtrex because I won’t be able to get both prescribed at once and I’m also worried that would be too hard on my liver
 
Messages
73
Update after a week and a half on Valcyte:

So I decided to take my full 3 gram dose of Valacyclovir and 900mg Valcyte daily at least until I run out of both. Am planning on asking my doc on Monday if he’ll allow me to take these together for a few months.

It’s hard to say if the Valcyte is helping me because I was feeling slightly improved before I even started taking it because my out of wack TSH had normalized some. Was on 50mcg of levo which brought my TSH of 48 down to 5. Doc then bumped my levo to 75mcg a few days after being prescribed Valcyte so not clue what’s helping. I’m even more improved after adding both meds but I’m leaning towards the thyroid meds being the most beneficial.

I was very active this weekend. My friend invited my SO and I to a mountain cabin and I was way more active than I intended to be. Walked a good amount and played several games of ping pong. Lots of standing and driving as well but never felt my PEM get too bad. This is a huge positive ! A year ago this would have left me so tired and achy for several days if not a week. I’m so happy with my progress!

I may make a separate improvement thread. I’m taking several supplements as well that could have an impact. Monolaurin, vitamin e, magnesium, l lysine
 

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Messages
73
Stopped taking the Valcyte. It was not enough by itself to stop EBV replication for me. Of course I was also worried about liver health in the long run when taking it alongside Valacyclovir. I think it also was making me deathly depressed.... I was feeling sadder than I have in a long long time the last week I was on it. Started feeling a ton better a day or two after quitting
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Stopped taking the Valcyte. It was not enough by itself to stop EBV replication for me. Of course I was also worried about liver health in the long run when taking it alongside Valacyclovir. I think it also was making me deathly depressed.... I was feeling sadder than I have in a long long time the last week I was on it. Started feeling a ton better a day or two after quitting

I understand the depression from valcyte. Knowing that the depression is coming from the medication helped me stay on it abit longer but eventually it got too much and had to stop. I also felt my mood improved quickly after stopping it.

From memory I had several runs at balcyte before I could tolerate it for a long period. I never had any elevated liver enzymes but I think it was because I've always taken NAC 600mg twice a day, almost since the onset of cfsme in 2002.
 
Messages
73
I understand the depression from valcyte. Knowing that the depression is coming from the medication helped me stay on it abit longer but eventually it got too much and had to stop. I also felt my mood improved quickly after stopping it.

From memory I had several runs at balcyte before I could tolerate it for a long period. I never had any elevated liver enzymes but I think it was because I've always taken NAC 600mg twice a day, almost since the onset of cfsme in 2002.
Glad to hear the depression wasn’t just a me thing. It was brutal and I don’t think I could stand it for much longer than a week without forcing myself to stop taking it.

I’ve actually been taking NAC daily / 3 times a week (I mix it up since it gives me a flat mood if I take it too long without a break) since November and I think it’s been helping my energy and bring my inflammation down. I still had elevated liver enzymes and pain while on it so I don’t think it would provide me enough protection in the long run but I did use Kava daily for about a month which may have elevated my enzymes. Tough to say

What benefits do you see from NAC other than liver ?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Glad to hear the depression wasn’t just a me thing. It was brutal and I don’t think I could stand it for much longer than a week without forcing myself to stop taking it.

I’ve actually been taking NAC daily / 3 times a week (I mix it up since it gives me a flat mood if I take it too long without a break) since November and I think it’s been helping my energy and bring my inflammation down. I still had elevated liver enzymes and pain while on it so I don’t think it would provide me enough protection in the long run but I did use Kava daily for about a month which may have elevated my enzymes. Tough to say

What benefits do you see from NAC other than liver ?

No specific benefits, I just used it as a general antioxidant to increase glutathione and to protect the liver as I've been on famvir for year and done several long courses of antibiotics. I will say I've never had elevated liver enzymes.

I have had some issue with kidney function but that was due to a couple of episodes of 3-4 day headache and vomitting spells that caused severe dehydration. My liver function didn't bounce back to normal until I started taking astragalus 1000mg twice a day and within a month it improved to above the normal level and has improved even further over time. Valcyte can be hard on the kidneys, but I wasn't using astragalus at that time.

I had several attempts at valcyte some quite short like a week or 2 and stopped due to worsening fatigue and depression, I don't usually get depression maybe mild at most. Eventually I started a valcyte course and for some reason I tolerated it for 18months but honestly I didn't make any more improvements past 6 months.

It can be a brutal drug to tolerate. I'm not sure if it's the toxicity or some sort of IRIS type reaction like hiv pts see when first starting treatment. IRIS I think stands for immune reconstitution inflammatory syndrome or something like that and could be the cause of the initial depressive symptoms.