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I have some questions for anyone who has ever taken Valcyte...

Gingergrrl

Senior Member
Messages
16,171
@jstefl

I have no idea if others have increased their BP while taking Valcyte. I just know that it happened to me.

Thanks and if Valcyte could increase my BP, that would be a great added benefit!

Prior to starting Valcyte, I had been to three different cardiologists, two of them electro physiologists, including one at the Mayo Clinic. I had every conceivable test done, and of course, they could find nothing wrong. The first cardiologist ended up giving me a prescription for an anti depressant. The second gave me the Midodrine, and when I asked him what was wrong, he said that I was like a computer, and needed rebooting. The third one just referred me to a Neurologist.

I have also seen three cardiologists. The first was useless, the second diagnosed with with IST and later with some form of POTS but failed to alert me of an abnormality on my exercise echo and felt she had done all she could do for me as my issues were autonomic which was not her expertise. My third (and current) cardio hospitalized me for tests and feels I have severe dysautonmia and micro-vascular angina but knows nothing about ME/CFS. He put me on Midodrine, increased my Atenolol, and prescribed Potassium. He said I am in the sickest 25% of patients that he sees yet every single visit, he asks me if I am able to exercise :eek: :bang-head:.

It was about this time that I found articles by Peckerman and Natelson on the internet. They seemed to be the only ones that understood that a viral infection can affect the heart. I suppose that the tests were necessary to rule out any potential problems, but it was very evident that when their tests didn't indicate any blockages, they were out of ideas.

I found those articles, too, and inquired about impedance cardiography tests but learned they are no longer done and there was no follow-up to those articles.

Before I started Valcyte I was extremely weak. The slightest exertion would cause shortness of breath. I nearly passed out every time I stood up, and I was afraid to drive as the brain fog was so severe.

I am extremely weak, too and the slightest exertion can give me shortness of breath.

I stopped taking Valcyte at my doctors orders. Remember, this was back in 2008, and not that many people had taken Valcyte for CFS. My doctor had gone out on a limb for me by prescribing the Valcyte, and there weren't any studies published to guide him, or me, in the use of Valcyte. The use of Valcyte was at my request. I had blood tests from Focus labs, and a tissue sample analyzed by Dr. Chia that showed evidence of viral infections. These tests were at my request. My doctor would never have prescribed Valcyte without my urging, and I am very thankful that he went along with my ideas.

It sounds like you had a great doctor. Do you think you would ever try Valcyte again now that more info is known?

The Valcyte didn't cure all of my problems, but helped me more than anything else that I have tried. I have gone from being almost bed bound in 2008 to being greatly improved today. I can now stand up without getting dizzy most of the time, I have much less brain fog, I sleep a lot less, my pulse and BP are still a bit low, typically 110/60, but are within a healthy range. I still don't like driving on really busy roads, but pretty much go where and when I want to. I am able to look after a grandson three days a week for 10 hours a day. I have three grandsons, 4, 3, and 7 months, and have one each day. I could not have done this before Valcyte.

That is amazing and to look after three children that young takes an incredible amount of energy. I would be thrilled if I could get my BP up to 110/60 (which I can't even reach with Midodrine!) and be able to drive pretty much wherever I need on my own.

I, and several others, detailed our Valcyte experience on the HHV-6 foundation website http://hhv-6foundation.org This site is a great resource for information about Valcyte and other antivirals. If you read through the patient forums there, you can get a good idea of what to expect.

Thank you and I will take a look at this. My HHV-6 antibody is positive only on IgG and negative on IgM but I am learning through all this research that this doesn't seem to much matter and Valcyte works as an anti-inflammatory and anti microglial separate from any anti-viral role. I also have two other active IgM's on viral tests.

While at a conference in 2008, I met the wife of Dr. Dharam Ablashi, and talked to her about her experience with Valcyte. She told me that she had been wheelchair bound before taking Valcyte. At the conference she claimed to be cured, and, from what I saw, she was pretty darned healthy. It probably helps to have a husband that was the co-discoverer of HHV-6, but I believe that a cure is possible for all of us.

Thank you for sharing that added info and I am basically wheelchair bound when we go outside unless I am only walking a few feet from the car to inside someone's home. But anything of a longer distance, I require a wheelchair. And prior to being ill, I could go on a two hour walk and work out at the gym with no issues. You have given me a lot of hope re: Valcyte, thank you!
 

Gingergrrl

Senior Member
Messages
16,171
@Antares in NYC

Hi Gingergrrl, I took Valcyte for under 4 weeks late in 2013, and had to stop because of the awful side effects. These side effects ocurrred almost immediately, and were so intense at times that I worried I was getting worse. They included:

- Tremendous nervousness, jitters, tremor
- Along with the nervousness i had moderate bouts of anxiety
- General ill feeling, profuse sweating
- Nausea
- But the absolute worse was the severe insomnia. It was so extreme that at first I spent 3 days with no sleep. Had to reduce the dose to get some rest, but it was still interfering severely with my sleep. I was even more of a wreck than usual.

The sad part is that my doctor and I fought my insurance for months to approve Valcyte, and when they did, it was an extremely awful experience for me and had to stop the treatment. :-(

Do you remember if the severe side effects and insomnia were at the higher loading dose of 1800 mg vs. the lower dose of 900 mg per day? No worries if you do not remember! I am so sorry that happened especially after fighting with insurance, how frustrating :bang-head::bang-head::bang-head:.
 

Gingergrrl

Senior Member
Messages
16,171
I stopped the Valcyte because there was no improvement and I had lost confidence in the doctors who prescribed it. I lost confidence because I had only been to their office once, and really all they did was draw blood. I didn't need to travel 1000 miles round trip to find a phlebotomist. There was no discussion of the test results with the doctor. A nurse called and read notes handed to her. That's not followup, especially for this illness. I never did talk to the doctor (actually a family nurse practitioner) after the initial appointment.

@jimells, I totally agree that you don't want to mess around with a drug like Valcyte if the doctor can't find the time to order the correct safety labs and interpret them for you. It sounds like you made the right choice at that time.

I'd have to see new evidence that I would likely benefit, e.g. tests showing active infections or that I'm in a subgroup that usually responds to it.

I am not sure if the science is there yet re: that evidence and the current belief (and anecdotal reports from other patients) are that they improved even in the absence of active IgM infections. I am also not sure that they have figured out sub-groups of who are the responders but I believe the science is heading in that direction. I don't know if I will be a responder but at this point, feel I have nothing more to lose in trying it.

Sorry Gingergirrl I still can't figure out how to answer the questions individually so they are mixed up above. The HHV6 did a number on my "stupid factor" and that's an area I hope to get back lol

@RUkiddingME, I can teach you how to insert quotes and even multi-quote and once you learn, it is easy. @Sushi taught me and I am the least technical person you will ever meet. Let me know and I will show you how to do it.

We are all rooting for you!!! I bet you will have a success story to tell as well! :))

Thank you so much and once I (hopefully!) start Valcyte, I will create a new thread to track my progress.
 

jeff_w

Senior Member
Messages
558
Do you remember if the severe side effects and insomnia were at the higher loading dose of 1800 mg vs. the lower dose of 900 mg per day? No worries if you do not remember! I am so sorry that happened especially after fighting with insurance, how frustrating :bang-head::bang-head::bang-head:.
Insomnia is so harsh with this disease.

Valcyte didn't give me insomnia, but if it had, I would have looked for a way to treat the insomnia until my body adapted to the Valcyte. There are all kinds of prescription sleep meds, some much better than others, and it can take trial and error to find the right one.

The gains from Valcyte, IMO, would be completely worth treating the insomnia with another drug.
 

SOC

Senior Member
Messages
7,849
@SOC, I know we have talked about this before but I don't recall the answer, how did the doctor determine that you'd had an IRIS reaction vs. a bad reaction to the Valcyte itself?
We didn't "determine" it was an IRIS reaction. We hypothesized it was an IRIS-like reaction. In other words, it looked like my immune system was coming back online after having been seriously impaired. :) We have no solid evidence to support the hypothesis. It's pure conjecture.

We were fairly confident it was not a medication reaction because it happened 4 months after I started Valcyte. A medication reaction should happen long before that, or show some indications sooner. Also, the symptoms were not typically medication reaction type. In particular, all the occult infections flaring up and immune-type symptoms are much more likely to be IRIS (or related) than a bad rxn to the med.
What is silymarin? Did you take it the entire time that you are on Valcyte?
Silymarin is a component of milk thistle. You may know it by that name. It is said to protect the liver. We took it the entire time we were on Valcyte.

That is amazing and I am no longer driving (at present) and would be thrilled to be able to drive three times a week and do easy errands on my own again. That would make me so happy.
I gave up driving, too -- for several years. After Valcyte (about 3 years ago) I started driving a little bit around town. Since last fall I have made several 2hr driving trips on my own. :thumbsup:
 
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Gingergrrl

Senior Member
Messages
16,171
@SOC
We didn't "determine" it was an IRIS reaction. We hypothesized it was an IRIS-like reaction. In other words, it looked like my immune system was coming back online after having been seriously impaired. :) We have no solid evidence to support the hypothesis. It's pure conjecture.

Thanks for explaining and that makes sense.

We were fairly confident it was not a medication reaction because it happened 4 months after I started Valcyte. A medication reaction should happen long before that, or show some indications sooner. Also, the symptoms were not typically medication reaction type. In particular, all the occult infections flaring up and immune-type symptoms are much more likely to be IRIS (or related) than a bad rxn to the med.

That makes sense, too!

Silymarin is a component of milk thistle. You may know it by that name. It is said to protect the liver. We took it the entire time we were on Valcyte.

I have heard of milk thistle but have never tried it. I googled it and it said that it can cause nausea, diarrhea, etc, :vomit:but am assuming you and your daughter did not have these side effects? I'd almost be afraid to try it right away and then not know if it was the Valcyte vs. milk thistle making me sick!

In your opinion, is it more dangerous to take Valycte without the milk thistle?

I gave up driving, too -- for several years. After Valcyte (about 3 years ago) I started driving a little bit around town. Since last fall I have made several 2hr driving trips on my own. :thumbsup:

I would love to be able to drive again so that is great to hear. Part of my issue is that even if I drove a short distance somewhere by myself, I can't walk more than a few feet once I get there. So once I can breathe and walk better, I am confident that I will be able to drive again, too.
 

SOC

Senior Member
Messages
7,849
I have heard of milk thistle but have never tried it. I googled it and it said that it can cause nausea, diarrhea, etc, :vomit:but am assuming you and your daughter did not have these side effects? I'd almost be afraid to try it right away and then not know if it was the Valcyte vs. milk thistle making me sick!

In your opinion, is it more dangerous to take Valycte without the milk thistle?
I have never hear of silymarin giving anyone nausea or diarrhea, so I don't think that's a common side effect. Still, everyone is different. You might try starting silymarin before you start Valcyte. Then you'd know if you have a bad rxn to it before you added in the Valcyte complication.

Valcyte can cause liver problems, so to me it only makes sense to me to give the liver some support while you're taking it. Your naturopath might have some good suggestions about appropriate supplements for that. I'm sure silymarin is not the only one.

The only time my daughter or I had any abnormal labs while on Valcyte was when she got sloppy about taking her silymarin late in the first round. Her liver enzymes started to climb (or is it drop? I forget which way is bad :confused:). So we feel it's just smarter for us to take liver support with Valcyte. YYMV


I would love to be able to drive again so that is great to hear. Part of my issue is that even if I drove a short distance somewhere by myself, I can't walk more than a few feet once I get there. So once I can breathe and walk better, I am confident that I will be able to drive again, too.
Our ME experiences are so similar in some ways. For a long time there was no point in me driving (even if I felt safe doing so) because I couldn't go anywhere on my own once I got there. In many places I couldn't even walk from the handicapped parking to the motorized carts. Heck, I couldn't even walk from the house to the car in the garage without going over my AT.

I first started driving again when I was well enough to walk from the house to the garage. At first, I only drove to tutoring jobs at other people's houses. If I could park in someone's driveway and walk a short distance into their house to the tutoring area without going up more than about 5 stairs, I was good. That was pretty much all the driving I did for a couple of years. It's only the last 6-9 months that I've been able to drive places and go in on my own, or drive more than about 15 minutes at a time.

Now I routinely drive 20 minutes several times a day, go up and down a full flight of stairs without trouble, shop in a large grocery store without using a motorized cart (and carry my groceries into the house), and am able to drive a couple of hours straight once a month or so. :thumbsup: It didn't happen overnight. It's all about baby steps and only doing what I was absolutely sure my body could handle -- no pushing.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I have heard of milk thistle but have never tried it. I googled it and it said that it can cause nausea, diarrhea, etc,

Milk thistle does interact with some drugs. I can't take it because it interacts with one I am taking. It doesn't interact with Valcyte though. Still, I'd check it on a drug interaction checker to see if it interacts with any other drugs you are taking.

Medications changed by the liver (Cytochrome P450 2C9 (CYP2C9) substrates)
Interaction Rating: Moderate Be cautious with this combination.
Talk with your health provider.
Some medications are changed and broken down by the liver. Milk thistle might decrease how quickly the liver breaks down some medications. Taking milk thistle along with some medications that are broken down by the liver can increase the effects and side effects of some medications. Before taking milk thistle, talk to your healthcare provider if you take any medications that are changed by the liver.
 

Gingergrrl

Senior Member
Messages
16,171
@SOC

I have never hear of silymarin giving anyone nausea or diarrhea, so I don't think that's a common side effect. Still, everyone is different. You might try starting silymarin before you start Valcyte. Then you'd know if you have a bad rxn to it before you added in the Valcyte complication.

Thanks and I've been getting a lot of feedback lately re: different meds and supplements and try to add one at a time. This one sounds important to take with Valcyte and if I decide to try it, I would try it first in case of nausea, etc.

Valcyte can cause liver problems, so to me it only makes sense to me to give the liver some support while you're taking it. Your naturopath might have some good suggestions about appropriate supplements for that. I'm sure silymarin is not the only one.

I stopped seeing my ND a long time ago although I would love to find a new one in the future. I have a referral for a functional medicine doctor who is very close to me location-wise and was recommended by someone I know plus on a list of referrals I requested from Genova (an idea that @Sushi recommended.) So I would love to see him but very expensive and I don't have the energy for anything else new right now.

The only time my daughter or I had any abnormal labs while on Valcyte was when she got sloppy about taking her silymarin late in the first round. Her liver enzymes started to climb (or is it drop? I forget which way is bad :confused:). So we feel it's just smarter for us to take liver support with Valcyte. YYMV

Thank you and that is good to know. What does YYMV mean?

Our ME experiences are so similar in some ways. For a long time there was no point in me driving (even if I felt safe doing so) because I couldn't go anywhere on my own once I got there. In many places I couldn't even walk from the handicapped parking to the motorized carts. Heck, I couldn't even walk from the house to the car in the garage without going over my AT.

This is where I am at now sadly. I can occasionally drive to get my daughter at the bus stop (b/c I don't get out of the car) or in theory I could go through a drive through b/c you also don't get out of the car (but I don't eat fast food!) I just can't drive anywhere that then involves walking which is just about everything a normal person does.

I first started driving again when I was well enough to walk from the house to the garage. At first, I only drove to tutoring jobs at other people's houses. If I could park in someone's driveway and walk a short distance into their house to the tutoring area without going up more than about 5 stairs, I was good. That was pretty much all the driving I did for a couple of years. It's only the last 6-9 months that I've been able to drive places and go in on my own, or drive more than about 15 minutes at a time.

I will be happy when I get back to that level and right now could not walk the five stairs :aghhh:.

Now I routinely drive 20 minutes several times a day, go up and down a full flight of stairs without trouble, shop in a large grocery store without using a motorized cart (and carry my groceries into the house), and am able to drive a couple of hours straight once a month or so. :thumbsup: It didn't happen overnight. It's all about baby steps and only doing what I was absolutely sure my body could handle -- no pushing.

I could probably drive for a few hours straight (b/c I am sitting) but there is no way on earth that I could dream of walking a full flight of stairs or carrying groceries. This seems so far from reality, I literally cannot imagine it although I want it to be true.
 

Gingergrrl

Senior Member
Messages
16,171
Milk thistle does interact with some drugs. I can't take it because it interacts with one I am taking. It doesn't interact with Valcyte though. Still, I'd check it on a drug interaction checker to see if it interacts with any other drugs you are taking.

@Sushi Thank you for letting me know about that and I looked up milk thistle and it doesn't seem to interact with anything that I am taking (at least not any prescriptions.) I am not sure about other supplements. If I take it, I will investigate this further.
 

SOC

Senior Member
Messages
7,849
@SOC
Thank you and that is good to know. What does YYMV mean?
If I had typed it correctly (YMMV) :oops::rolleyes:, it would have stood for Your Mileage May Vary, an expression based on old advertisements for cars. It means that your experience may not be the same as mine.
This is where I am at now sadly. I can occasionally drive to get my daughter at the bus stop (b/c I don't get out of the car) or in theory I could go through a drive through b/c you also don't get out of the car (but I don't eat fast food!) I just can't drive anywhere that then involves walking which is just about everything a normal person does.
I will be happy when I get back to that level and right now could not walk the five stairs :aghhh:.
I totally get that. Been there, done that, got the t-shirt. That is an awful place to be. I hated having no independence. It might be worth looking into getting some kind of a power chair, but I'd wait to see if the Valcyte is going to do wonderful things. ;)
I could probably drive for a few hours straight (b/c I am sitting) but there is no way on earth that I could dream of walking a full flight of stairs or carrying groceries. This seems so far from reality, I literally cannot imagine it although I want it to be true.
I know! A year ago I wasn't carrying groceries, although I was able to do a full flight of stairs if I didn't climb them fast or often. It is hard to imagine being able to function normally when you are where you are now. It's just a dream. In fact, now that I can do most normal things -- grocery shopping, work full-time (after a fashion) -- it feels like a dream. I'm still expecting to wake up and find myself housebound again.
 

Gingergrrl

Senior Member
Messages
16,171
@SOC @jeff_w @zzz @RUkiddingME @jstefl and anyone else who takes Valcyte...

I have one more Valcyte question and wanted to see if you guys always take it (or took it) with food? I forgot to ask this question in my original post and would love to hear the consensus. Thank you in advance for any feedback!
 

SOC

Senior Member
Messages
7,849
@SOC @jeff_w @zzz @RUkiddingME @jstefl and anyone else who takes Valcyte...

I have one more Valcyte question and wanted to see if you guys always take it (or took it) with food? I forgot to ask this question in my original post and would love to hear the consensus. Thank you in advance for any feedback!
Yes, I always take it with food. No matter what. If I can't eat, I don't take it. I don't want to risk GI side effects. Also, Valcyte has greater bioavailability when taken with fatty foods. Roche recommends it be taken with food. That's good enough for me. Why take the chance of not getting the most out of this expensive medication or of increasing potential side effects?
 

Gingergrrl

Senior Member
Messages
16,171
Yes, I always take it with food. No matter what. If I can't eat, I don't take it. I don't want to risk GI side effects. Also, Valcyte has greater bioavailability when taken with fatty foods. Roche recommends it be taken with food. That's good enough for me. Why take the chance of not getting the most out of this expensive medication or of increasing potential side effects?

Absolutely and I learned that from a few people today (after I posted my question!) I will exclusively be taking it with fatty foods to reduce GI effects and increase bioavailability. I was not aware of that when I posted and wanted confirmation. Thank you @SOC and everyone who gave me the info.
 

NK17

Senior Member
Messages
592
@Gingergrrl I also take Valcyte with fatty foods, specifically coconut oil which I started to take back when I was taking the tablets and /or fish oil and my usual soft boiled egg in the morning.
 

Gingergrrl

Senior Member
Messages
16,171
My start to Valcyte has not been so smooth (what else is new?) and it is unclear if I will be able to tolerate this med for safety reasons (not b/c of nausea or minor annoyances which I would just push through.) Will explain more another day as it is after 2 AM here. Am still going to do everything in my power to find a way to safely take this medication and am not giving up yet.
 

CBS

Senior Member
Messages
1,522
My start to Valcyte has not been so smooth (what else is new?) and it is unclear if I will be able to tolerate this med for safety reasons (not b/c of nausea or minor annoyances which I would just push through.) Will explain more another day as it is after 2 AM here. Am still going to do everything in my power to find a way to safely take this medication and am not giving up yet.

@Gingergrrl - Just wanted to say I am sorry to hear that your Valcyte trial has gotten off to such a rough start.

Wishing you the best!
 

NK17

Senior Member
Messages
592
@Gingergrrl I'm also very sorry to learn that your first attempt with Valcyte was not successful.

Wishing you a smooth recovery from this bump in the road to remission.
 

Gingergrrl

Senior Member
Messages
16,171
@CBS thank you for your PM and to everyone who has been giving me ongoing support on Valcyte and other issues, I am so grateful and am sorry I am so far behind on responding. I read everything I receive and it really keeps me going. I am pretty much bed bound right now except to go to that blood test.

I've had severe dizziness/vertigo the last 3-4 days with weakness and fatigue to the level of anemia which I just got tested for but don't have the results yet. And this was at a micro tiny dose of Valcyte that no other human would react to.

@NK17 thank you :hug:
 

Aerose91

Senior Member
Messages
1,400
I took Valcyte for 6 months to address HHV-6 titres. I started at 450 mg/day and went up to 900mg/day and held there. I don't remember many more specifics because my memory is so bad

It gave me no discernable effect. Didn't feel better or worse and zero benefits, zero side effects. I think a couple times I may have gotten nauseous but it was very short lived.

I had weekly blood tests done and while on it my white blood cell count dropped but Dr Enlander said that's normal since hhv-6 lives there. During the 6 months my titres dropped from 1.16 to 1.4, still a little high but lower, nonetheless. No symptom changes, though.

It was damn expensive. Even with my insurance I was still paying over $1,200 / month. After 6 months of no changes we decided I should come off it.