I recently hit the 2 year anniversary since I started taking Valcyte for my ME/CFS. The post I wrote detailing my decision to start on Valcyte, a pretty risky drug as drugs go, is still one of the most visited posts on my blog. That post was written Feb. 10, 2011: Valcyte: The (Slightly) Scary Adventure Begins
A number of fellow patients have asked me about this, often weighing the difficult decision to give it a try or not, so I’d like to share my experiences in a more cohesive fashion. While I’ve written about it periodically over the last couple years, those are mostly short comments thrown in here and there.
Has Valcyte helped? Yes, absolutely! I found out just how much when I had to go off it for a month.
Is it worth the risk? Only you & your doctor can decide that, but I have no regrets. I did have some complications with low cell counts (see below), but given where I was when I started, physically as well as cognitively, it has been worth the increase in quality of life.
When I think back to where I was pre-Valcyte, I remember the last few minutes of the conversation I had with my PCP about it. I had requested Valcyte based on preliminary studies coming out of Stanford, and she agreed to a trial, but she was worried (and going out on a limb for me – she’s a PCP in a big practice, and while she specializes in fibromyalgia, this was a whole ‘nother thing entirely).
As she put it, Valcyte has a “black box warning” on it by the FDA (that’s a bad thing), and is a “medicine of last resort.” To which I said something like, “We’re there. I’m circling the drain, and we have to do something. Now. And I’m not depressed, but to put it simply, I can’t go on living like this. I just can’t. It’s pointless.” She assured me she understood, and sent the script to the pharmacy, making sure I understood we’d be doing labs very often to be sure no complications come up.
Here’s a collection of my observations, as the months passed:
May 19, 2011 (3 months into treatment):
We’re giving the Valcyte a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing.
It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop.
July 1, 2011 (4 1/2 months into treatment):
Valcyte continues to help, increasing my cognitive functioning somewhat, making me more alert & aware. Physically, it’s decreased my recovery time from Post-Exertional Malaise from our weekly grocery shopping trips to 1 or 2 days instead of 3 or 4 days – a big improvement, as these things go. I’m still very sick, still bed-bound most of the time, but I at least want to do more and interact with the world more.
April 12, 2012 (14 months into treatment):
Risky Decisions, or Valcyte: the Very Scary Adventure Ends
The entire post is about Valcyte, detailing the crash of my cell counts, and how common I found out this was – thanks to the patient community. But in everyone I connected with, their counts recovered, usually quickly, and I’m pretty sure they all resumed treatment.
The Valcyte helped me, mostly by reducing my PEM, and improved my cognitive function somewhat. It was the only thing to really help at all in the last 5 or more years.
The (more than slightly) scary Valcyte adventure has ended, for now. Once my blood counts come back up, I hope to re-start it, likely at a lower dose.
We make these risky decisions all the time, we patients. Some have said they’ve “donated their body to science” while they’re still using them. I think that’s a good way to put it.
May 27, 2012 (15 months into treatment):
I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.
My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.
Then, Now, and EBV
I resumed taking the full dose of Valcyte after a month of okay labs.
However, a couple months ago my LLMD decided I might benefit more from Famvir than from Valcyte, and as she pointed out, my EBV titers never came down.
However, despite having very high titers to EBV & HSV 2, the number of sore throats and swollen glands and viral flares definitely improved greatly from taking Valcyte.
So at this time, I’m taking a half dose of each – one tablet of Valcyte and one tablet of Famvir – as we wean me off Valcyte and onto the Famvir. The goal is to avoid a flare in the many viruses living happily in my body. Since I have a fair amount of Valcyte on hand, and want to use it up, it will take a couple more months before the switch is complete.
I cannot tell you what to do.
I know that faced with all the “black box warnings” that Valcyte carries, it’s scary as hell. But so far as I know, a fair number of ME/CFS patients have been trying it, and mostly reporting good experiences, with the occasional blip in cell counts.
It’s hard to define what the difference is, exactly, in me, pre-Valcyte versus now, but my mother may put it best when she says I “simply seem more alive.” It’s something she noticed after about 3 or 4 months, and even more so as time went on.
I’m much more cognitively aware, much more able to spend time on the web, connecting with the patient community, and keeping up with what’s going on in the world.
And in an illness we call the “living death,” that’s definitely a good thing.
Wolfdreams.... 
My dear friend Ash, I am constantly amazed at how much knowledge you have and I mean that with my heart. I think you should go to medical school under Dr. Andrew Weill, you would be great partners. I had hot heard of either drug so thank you for the information. I’ve been feeling better, not fabulous but better than before which makes me grateful. I know I’ll feel even better when this horrendous winter is over. Much love and hugs, Laurie
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Thanks for your report. Took it for 6 months with no noticeable improvement and it wiped out my stomach.
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I’m sorry it didn’t work for you, Patricia. Have you tried any of the other anti-virals? Valtrex or Famvir? I know how disappointing it is when you have high hopes for a new protocol and it doesn’t work, or even worse, makes things worse.
Hoping you find something that helps!
Ash
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Ash- I really appreciate your report. I follow you closely as we share most symptoms. I started Valtrex about the same time you started Valcyte. I too have had good results. but not without side effects. I lost my sense of balance; the ground had sea swells. I had to hold on to something constantly but that was easily fixed. It was due to crystal buildup in my inner ear. Also the crystals settled in my kidneys. A respite helped. I have been off Valtrex for about 6 months now without relapse. No return of my shingles. My pain levels improved with adding Potassium Magnesium Aspartate and Zinc daily. I live in a medical marijuana state and have tried it with good results but rarely need it now. My trips out of the house still need a nap afterward but I can go out if the weather is decent. I feel like so many of us are sisters by disease rather than genes. It is so helpful that we share. I hope you continue to share your health experiences and your lovely Shenandoah Valley. We both have neighborhood deer herds also. I am about as far from you as the country allows but near in heart. Take care
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Wow, Marilyn, that’s terrible! I took Valtrex at a gram a day for years with no noticeable side effects. I really thought of it as kinda tame compared to Valcyte, but that just goes to show you we never know what weird, often rare, side effects will crop up. I’m glad that you’ve mostly recovered from that!
And, thank you for sharing and caring – and you’re very right! Many of us have become like sisters, brought together through this illness, but I count myself lucky to have met so many, like yourself, who share my interests & passions. 🙂
I wish someday I could visit your neck of the woods. Never made it to the NW, except for a cruise to Alaska that left out of Vancouver. That’s a very cherished memory. Say “hi” to your deer for me! 😉
*gentle hugs*
Ash
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Thank you so much for sharing your experiences with Valcyte (and life). I have been taking it for 6 months. I took 900 mg for 3 weeks and then 450 for the last 5+ months. Now I am pulsing it – 900 for 3 weeks and then 450 for three weeks.
Valcyte has made a significant difference in my life. Your mother put it perfectly. I feel more alive. The one thing that has not returned for me is cognitive function. I am disappointed about that, but overall, very grateful. I was not sick for as long as you. I am able to do something most days now. I may crash for a day or two, but usually not. I try to be careful.
Am I back to normal? Not even close. But I have a life worth living now.
All my best
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” But I have a life worth living now.”
Beautiful words. And if that is all the improvement you get, it’s worth it, isn’t it? I hope you get more & more improvement as time goes by, especially with pulsing the dose. It takes time to get those rampaging critters under control.
Best of luck to you, Cat!
Ash
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SO glad to hear of your improvement Ash! I must say all of you who have tried these meds are braver than I am. I am also stuck with drs. who don’t believe the viruses THEY’VE had, should ever affect someone as they have affected me IF that is even my issue. With severe CFIDS/FMS, & living with it for 56 yrs., I keep losing ground & especially the last 22 yrs. Sick of drs.
There are so many issues of not knowing what this is even from, let alone to know what direction to pursue. The dr. tried me on Tamiful for a wk. to see if being on antibiotics would help. She asked if they ever have before. Nope! I think at this age I am tired of trying to figure it out. I am not giving up, but giving in, & there really is a difference. All the $ I’ve spent on supplements/vits/minerals or thing to help with energy have been a waste. I would like to have that money now to put it towards better treatments if I even had some direction to go in. Hugs to you Ash, & to the others who know what it is like to be robbed of life. We are SO strong to fight through this daily, & thankfully, we are all fighter.
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so happy to hear of your improvement!
i’m, wondering if any you (or anyone else) knows about the relationship between Valtrex and Valcyte intolerance? is there one? i was on Valtrex for a month and it gave me tachycardia so i had to stop as sleep was totally compromised. would this be an indication that i may not be a candidate for Valcyte? … i’ve also had worse immune probs since starting/stopping Valtrex. within 2 months my flu-like Sx came back when they’d been largely gone for years.
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I was on Valtrex for years before starting Valcyte, with no problems. I have no idea if reaction to one would mean you’d also react to the other. I suspect you might have to give it a try and see.
But as far as your flu like symptoms returning, oftentimes when patients start on anti-virals they will get a flare of whichever viruses are their issue, and this is what that sounds like. It’s actually kind of a good thing, as it usually means the anti-viral is working. I think when you start treatment, it puts the viruses on notice that they are in danger, and they respond by replicating like crazy. Then there may also be a flare when they start dying off in big numbers, taking the cells they’ve infected with them, and flooding your body with toxins.
At least, that is my understanding. Perhaps, if the Valtrex activated the latent viruses in your body, and then you discontinued treatment, you *would* have more immune problems, because now they’re active again & your body is actively fighting them.
That’s my best guess – but I’m not a doctor.
I hope you find something you can tolerate.
Best of luck!
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Thanks so much for this wonderful recap. I will be sharing it with my Valcyte buddies who are all taking it right now. It’s so good to hear good stories about it. I am starting my 3rd month on it today with absolutely no side-effects whatsoever. I’m a bit worried as the studies showed that the non-responders were the ones that did not experience a flare-up early on in the treatment. And the majority of people I am following on it are feeling pretty sick at the beginning. Did you find that the improvement was mostly cognitive? I have the cognitive overload and also need a wheelchair for any appointments. I really hope to be able to “live” more. Thanks again for sharing your experience!!
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Hey there Ash. I have never dealt with the same physical challenges you are dealing with and am nervous just hearing about the “black box” warnings… but as you know I have called myself a PROFESSIONAL PATIENT over the years and being diagnosed HIV+ for over 25 years and bi-polar too long to think, you know I take a large amount of meds myself and deal with sometimes brutal side effects
I totally understand how medications can make massive changes in quality of life… both great and really scary bad. I do however see a difference in you over the years that I have known you and really enjoyed your company on our trip to OH… where you seemed to have more energy and be in better spirits than other times I have seen you in the past. I also can relate to being given your life back… I value mine tremendously (duh) but at times have feared the worst over the years. I have been blogging alot about the past and where I have been and where I am today! amazingly healthy and feeling obvious progress
There is NOTHING that makes me happier than to see you (and Rhia) happy. I have known you long enough to totally feel your pain and have been so very worried about you at times. So whatever tough choices you make about meds and life, know that I love you so much and that I am so blessed to have you in my life and to have gotten to know you so well…SO:
keep getting better damnit… that’s an order!!
I love to see your smile and hear you laugh. I hope to come visit you soon as you know from my blog that I am hiking more and more and can’t wait to hit the trail up to Mary’s Rock from Skyline drive and to backpack for a few days near you on the AT
Give the doggies and cat ruffly hugs for me and please give Rhia a big hug
love you
Moshe
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Aww, thank you, Moshe, you’ve brought a big smile to both my face & my heart! I’ve been going through a rough patch, with a seemingly never-ending flu-like virus/sinus infection, and have been laying pretty low the last couple weeks. My body has a tough time fighting even simple stuff off anymore, and given how sick this bug has made Rhia, too, it’s anything but simple.
So the lift your wonderful comment has brought me is well timed, and I only wish I’d read it sooner! But perhaps today was the day I needed it most.
I’m so proud of what you are doing with Aids Hike, and amazed to see it moving along so quickly. But you are following your passion, which is what we all should do – and it shows! You have overcome so much over your life, and learned so much, and I am so happy to see your dream coming into fruition.
I look forward to seeing you very soon – there’s snow on the mountain today, but won’t be long before the redbuds are out, the dogwoods are blooming, and it’ll be the perfect time for a visit!
Giant hugs and much Love from the Heart!
Ash
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I have CFS/ME taking Valcyte for 26 months. Six months ago I tried colloidal silver for pain. Surprise. parasites came out of my mouth, nose, ears. Especially at night. They made nests or colonies on my scalp. They hate silver and this is what makes you sick. They eat holes in your brain and leave lesions. This is the truth.
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Has anyone taken Valcyte for MS? My daughter with MS was put on Valcyte by a famous specialist of Infectious Diseases. She stopped very early on and before resuming, she wants to hear from people with MS who took or take Valcyte. Thanks.
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I wish I could help you, but the only people I know who have tried it have had ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome).
Given that the doctor is in infectious disease, I would wonder what showed up on her labs that might be helped by strong antiviirals. Does she have high titers or antibodies to EBV (Epstein Barr virus), or any of the other herpes family viruses, such as herpes simplex, HHV-6, parvovirus, or any other infections? If you don’t know what her labs results are, you can register on Labcorp and Quest websites, and gain access to her results there. Only the most basic of tests are actually done in the office. Usually they send it out to whatever lab your insurance requires for everything else. Antibody tests for viruses are not done that often, and would be sent out. Always ask for a copy of her labs.
I commend you for trying to learn more about Valcyte before going for it. If there’s one giant lesson to be had from my last 17 years sick, it’s that my health is as much my responsibility as my doctors’. Even really good doctors miss things, and learning about my meds and their side effects is essential. What a great mom you are!
Let me know if there’s anything more I can help with!
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My blog is http://www.cfsandme.com
Started Valcyte 2 weeks ago after going to Stanford. I’m so sick and so depressed. Circling the drain as you put it
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