Round two of Valcyte- question

[RUkiddingME]

Hey guys,

As many of you know through my Valcyte blog, I initially started on Valcyte January, 2013 for 15 months. The first six weeks on treatment I felt no different, then weeks 7-12 I was completely bedridden. Week 13 is where I started having some quality of life again. I finished the 15 months in mid April of this year.

My doctor restarted me on Valcyte at the end of June.(My progress had completely plateaued in the Fall/winter due to some carbon monoxide exposure and he figured we need to try and jump start my immune system again after this setback).

The first six weeks I was doing ok and then week 7 bang, crash mode since.

Here is my question, after being off Valcyte only 2.5 months before restarting it again, could I be going through the exact process as when I initially took it? My fingers are crossed that I perk up again in another four weeks.

I could ask my specialist this question but he is in the US and phone consults aren't cheap. Maybe someone on here has had a similar experience with round two. Thanks

 

[zzz]

Valcyte, like most drugs, works differently for different people. In the two and a half years before starting Valcyte (actually, first IV ganciclovir, before Valcyte came out), I had headaches and a low grade fever all the time. This disappeared several weeks into my IV ganciclovir treatment. Once my treatment was over after seven weeks, I continued to improve for a while, but then, two months later, my immune system crashed. Luckily, Valcyte was released a month later, and once I started taking it, it jump started my immune system.

I continued taking Valcyte for five years. Whenever I went off it, within a couple of weeks the headaches and fever would return. Only after five years was I able to go off it without the headaches and fever.

Here is my question, after being off Valcyte only 2.5 months before restarting it again, could I be going through the exact process as when I initially took it? My fingers are crossed that I perk up again in another four weeks.

It's very possible. The virus may have taken the break in the treatment to multiply again to near previous levels, in which case a repeat of the previous process may make sense. Although two and a half months is not a long break, it's about the same amount of time that I was off ganciclovir before my immune system crashed. I have also seen another person report here that they developed shingles after being off Valcyte for a short time. So it seems that at least in some people, stopping Valcyte suddenly can have negative effects on the immune system. Whether this is due to the Valcyte itself or some other factors coming into play that had been repressed by the Valcyte is hard to say.

My doctor restarted me on Valcyte at the end of June.(My progress had completely plateaued in the Fall/winter due to some carbon monoxide exposure and he figured we need to try and jump start my immune system again after this setback).

If you're using Valcyte to modulate the immune system (which I managed to do successfully a couple of times), it seems that a short break from the Valcyte works best. For me, I found that a two-week break was the ideal interval.

The fact that you had any reaction at all to the second round of Valcyte, especially when it was so close to the first round, says to me that you weren't on the Valcyte long enough. For me, I had very obvious symptoms of headaches and fever when I went off the Valcyte too soon. If you can identify symptoms that come and go with the Valcyte, then you can use these symptoms to tell you when you've been on the Valcyte long enough. The five years it took me was a long time, but I needed it. Most people seem to need it for much less time than that.

You can also try adding Zantac 150 (available OTC) twice a day to your regimen. (Check with your doctor first.) Dr. Jay Goldstein found that H2 blockers such as Zantac were effective at eliminating herpes virus activity in 90% of his patients.

 

[RUkiddingME]

Valcyte, like most drugs, works differently for different people. In the two and a half years before starting Valcyte (actually, first IV ganciclovir, before Valcyte came out), I had headaches and a low grade fever all the time. This disappeared several weeks into my IV ganciclovir treatment. Once my treatment was over after seven weeks, I continued to improve for a while, but then, two months later, my immune system crashed. Luckily, Valcyte was released a month later, and once I started taking it, it jump started my immune system.

I continued taking Valcyte for five years. Whenever I went off it, within a couple of weeks the headaches and fever would return. Only after five years was I able to go off it without the headaches and fever.


It's very possible. The virus may have taken the break in the treatment to multiply again to near previous levels, in which case a repeat of the previous process may make sense. Although two and a half months is not a long break, it's about the same amount of time that I was off ganciclovir before my immune system crashed. I have also seen another person report here that they developed shingles after being off Valcyte for a short time. So it seems that at least in some people, stopping Valcyte suddenly can have negative effects on the immune system. Whether this is due to the Valcyte itself or some other factors coming into play that had been repressed by the Valcyte is hard to say.


If you're using Valcyte to modulate the immune system (which I managed to do successfully a couple of times), it seems that a short break from the Valcyte works best. For me, I found that a two-week break was the ideal interval.

The fact that you had any reaction at all to the second round of Valcyte, especially when it was so close to the first round, says to me that you weren't on the Valcyte long enough. For me, I had very obvious symptoms of headaches and fever when I went off the Valcyte too soon. If you can identify symptoms that come and go with the Valcyte, then you can use these symptoms to tell you when you've been on the Valcyte long enough. The five years it took me was a long time, but I needed it. Most people seem to need it for much less time than that.

You can also try adding Zantac 150 (available OTC) twice a day to your regimen. (Check with your doctor first.) Dr. Jay Goldstein found that H2 blockers such as Zantac were effective at eliminating herpes virus activity in 90% of his patients.

thank you so much for your thorough explanation. Much appreciated! I'm on Valcyte for HHV6/EBV. Originally my doctor only wanted me on it for six months and I kept convincing him to stay on it longer because I tolerate the drug very well. After the 15 months I knew that it wasn't long enough because I still need to nap three hours every afternoon etc. Never heard about taking Zantac. Very interesting! Thanks again and hopefully I will bounce back better than during round one!

 

[SOC]

@RUkiddingME,
My situation is quite a bit different from yours, but I'll share in case it helps.

The first time I took Valcyte I was bedbound. For 4 months I didn't notice a thing, but my daughter, who started at the same time, was seeing a slow improvement, so I wasn't discouraged. From 4-6 months I had what looked like an IRIS-like reaction -- like a bad flare plus shingles. Not unbearable, but certainly unpleasant. At 6-7 months I noticed a huge improvement over my pre-Valcyte condition. I'm guessing that series of events was my immune system was improving and going after occult infections. Just a guess, though.

After that I had very slow improvement which would slow to practically nothing if I tried to do more because I felt better, but would start again if I stopped the extra activity. I was on Valcyte 2 years give or take a month.

Daughter, OTOH, has a slow but steady improvement and went from about a 5 to a 9.5 in 20 months.

We were both off Valcyte 2 years before our symptoms started up again and our HHV6 titres started to climb. In the second round we both noticed improvement within the month and have had steady improvement over the past 6-7 months. Again I had a sudden significant improvement at the 6-7 month mark, although this time without the nasty IRIS-like rxn first. I can't explain it, I just report it. Right now, I'm more functional than I have ever been since I got ME. I'm at maybe a 6/6.5 on the PR Activity Level Scale -- big improvement over 1, which is where I started 4.5 years ago.

Daughter is having a slower recovery this round, probably because we didn't catch her reactivation as soon as we did mine, and because she is a full-time graduate student in engineering and is probably doing more than is ideal for the fastest improvement. On the positive side, she has never had any trouble with Valcyte, just slow steady improvement.

My wild guess is that you are doing too much to get the most out of Valcyte. Valcyte stops the virus replicating, but it doesn't kill infected cells. Your body still needs to do that part. If you don't give it as much rest as it needs to do that big job, progress will be slow to nonexistent. But you're probably not getting worse while you're on it, which is a good thing.

You could be having an idiopathic rxn to the medication itself. Maybe your body just needs to adjust to the med each time you start it again...? Are you taking silymarin or something else to protect your liver?

15 months is probably not enough for someone who started bedbound. Maybe you lost some ground by letting the virus replicate while you were off the Valcyte for 2.5 months and you just need to catch up again...?

Valcyte isn't supposed to be very effective for EBV. Have you asked your doctor to consider adding Valtrex or Famvir to deal with the EBV?

Because you are having a bad rxn, it's probably a good idea to check with your doctor, even if it is expensive. Better safe than sorry with a medication like Valcyte. How are your neutrophils and liver doing? Is your doc watching them carefully?

 

[RUkiddingME]

@RUkiddingME,
My situation is quite a bit different from yours, but I'll share in case it helps.

The first time I took Valcyte I was bedbound. For 4 months I didn't notice a thing, but my daughter, who started at the same time, was seeing a slow improvement, so I wasn't discouraged. From 4-6 months I had what looked like an IRIS-like reaction -- like a bad flare plus shingles. Not unbearable, but certainly unpleasant. At 6-7 months I noticed a huge improvement over my pre-Valcyte condition. I'm guessing that series of events was my immune system was improving and going after occult infections. Just a guess, though.

After that I had very slow improvement which would slow to practically nothing if I tried to do more because I felt better, but would start again if I stopped the extra activity. I was on Valcyte 2 years give or take a month.

Daughter, OTOH, has a slow but steady improvement and went from about a 5 to a 9.5 in 20 months.

We were both off Valcyte 2 years before our symptoms started up again and our HHV6 titres started to climb. In the second round we both noticed improvement within the month and have had steady improvement over the past 6-7 months. Again I had a sudden significant improvement at the 6-7 month mark, although this time without the nasty IRIS-like rxn first. I can't explain it, I just report it. Right now, I'm more functional than I have ever been since I got ME. I'm at maybe a 6/6.5 on the PR Activity Level Scale -- big improvement over 1, which is where I started 4.5 years ago.

Daughter is having a slower recovery this round, probably because we didn't catch her reactivation as soon as we did mine, and because she is a full-time graduate student in engineering and is probably doing more than is ideal for the fastest improvement. On the positive side, she has never had any trouble with Valcyte, just slow steady improvement.

My wild guess is that you are doing too much to get the most out of Valcyte. Valcyte stops the virus replicating, but it doesn't kill infected cells. Your body still needs to do that part. If you don't give it as much rest as it needs to do that big job, progress will be slow to nonexistent. But you're probably not getting worse while you're on it, which is a good thing.

You could be having an idiopathic rxn to the medication itself. Maybe your body just needs to adjust to the med each time you start it again...? Are you taking silymarin or something else to protect your liver?

15 months is probably not enough for someone who started bedbound. Maybe you lost some ground by letting the virus replicate while you were off the Valcyte for 2.5 months and you just need to catch up again...?

Valcyte isn't supposed to be very effective for EBV. Have you asked your doctor to consider adding Valtrex or Famvir to deal with the EBV?

Because you are having a bad rxn, it's probably a good idea to check with your doctor, even if it is expensive. Better safe than sorry with a medication like Valcyte. How are your neutrophils and liver doing? Is your doc watching them carefully?

Thanks SOC, your replies are always valuable to me. I am so glad you are doing much better and hope your daughter can benefit from round two as well. I am resting a lot and I am still on disability. I get dressed and get downstairs in my house and not much else. Just riding out the storm. Before the end of the original 15 months I was on both Valcyte and Famvir and then Famvir only through til June when I was told to stop and start the Valcyte. Even during this relapse I am still doing better than pre-Valcyte round one. I was able to cook supper today. My labs are still being monitored closely with no problems. The only time there was ever a problem is when I had a glass of wine (round one). I know now that it affects my Lipase level so a definite no no. I am on NAC for liver support. I really wish I could have stayed on a steady two years without the break. Oh well, just following my specialist's orders. It still find it so strange that all the top doctors cannot compare notes and come up with a protocol on the length of AV treatments. I'm sure I will bounce back soon. Thanks again and hope your progress continues.

 

[Gingergrrl]

It still find it so strange that all the top doctors cannot compare notes and come up with a protocol on the length of AV treatments.

@RUkiddingME That is a very good point that I had never thought about! Is there really no system in which the top CFS specialists compare protocols on the length and dosages of AV treatments? I do not mean this in any way as a criticism of the doctors and I guess this whole type of treatment is so new that they are just not at that point? I hope that you start to feel better very soon and I read your whole blog back when I was deciding on AV treatment for myself and it was very helpful.

 

[heapsreal]

@RUkiddingME i think for many of us we have to stay on antivirals or used it some type of intermittent fashion(3-6month course when viral load goes up??) until we can somehow strengthen our immune system to cope with these infections??

Be nice to get ampligen in a pill or some type of self injection to strengthen our immune system once we have got our infectious load down.

good luck.