Valcyte for ME/CFS: 2nd Anniversary Recap!

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.

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And Then, Everything Changed, Part 1

The last 6 weeks or so have seen some massive changes happen in my life, some for the better, some for the (much) worse. I had planned a nice long post detailing the adrenal exhaustion, stage 3, I was diagnosed with, and how that is so common in my fellow ME/CFS patients, but since I’m in serious pain right now and shouldn’t even be using my left hand since my shoulder disintegrated on me (vicious attack of the refrigerator), and am beyond-exhausted from my mother’s moving from Fairfax to Houston (she’s on the way right now), I’m going to cram 3 posts worth into this one post. (Longest run-on sentence ever!)

So, here in as short a detail as I can get it is: Adrenal Stress/Exhaustion, Re-starting Valcyte, Tick-Borne Disease Treatment, & Shoulder Disintegration. My Mom’s Move will be in Part 2..

Adrenal Stress Syndrome & Adrenal Exhaustion:

I was diagnosed with adrenal stress syndrome, stage 2, at least a decade ago. Because of it, I was nocturnal for the longest time, the way Rhiannon is right now. Essentially, when you are in that stage, your adrenal glands don’t release cortisol (which is pretty much the same thing as cortisone) correctly, with the highest levels in the early morning hours to wake you up, slowly falling to lower levels until you get sleepy at night and sleep on a proper schedule.

Instead, your body releases cortisol at the highest levels in the evening, making you widest awake at 10pm or later, and it’s virtually impossible to fall asleep, often until near dawn, depending on how screwed up your body is. Even if you manage to knock yourself out with a sleeping pill, your brain doesn’t reach the proper level of deep sleep because the cortisol is too high.

For Rhiannon, this means her deepest, most essential to health, sleep comes between 6am and 1pm, which is why she is in online school – it was simply impossible for her to get up and function well enough to make it thru the day at public school.

I’ve progressed from stage 2 to stage 3, adrenal exhaustion. My adrenals are not releasing much cortisol at all at any time, but there’s much more than cortisol involved, as the adrenal glands regulate many hormones that control the way the body functions.

I’ve started on cortisone replacement therapy – the same cortisone as is used for so many illnesses, but at a level that is supposed to mimic what the body is supposed to be doing on its own (5mg upon awakening, and 2.5mg in the afternoon). This low a dose should avoid the many pitfalls & side effects of cortisone, although I did have a major candida flare in the beginning.

It does seem to be helping, so I’m glad I’ve started it. One reason we had not been able to re-test me for it was because I was on the Florinef (fludrocortisone) for Neurally Mediated Hypotension (NMH, aka POTS), and taking that interferes with the accuracy of results.

My LLMD also started me on 3 different adrenal support supplements.

As to why I’ve progressed to stage 3, I’m pretty sure we can lay the blame for that squarely on the shoulders of the stimulant meds (Provigil, Nuvigil, Ritalin) that are handed out to us patients so we can function. They enabled me to work several years longer than I should have, and I still take them when I make trips to the doctor or grocery shopping.

But pushing myself to get more accomplished has led to things being much, much worse!

If you have ME/CFS, I strongly recommend you ask your doctor about taking the adrenal stress test, which is a simple saliva test (you soak cotton rolls with salive 4 times a day). The test used to be speciality labs only, but Labcorp did mine, so apparently it’s more widely available. There is a TON of information about adrenal stress online, and just google it & dig in. I found Dr Lam’s site to go very indepth.

Re-started Valcyte:

As you may know, my 14 months on Valcyte came to a screeching stop when my blood cell counts fell drastically, which was detailed in Risky Decisions, or Valcyte: the Very Scary Adventure Ends.

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.

Tick-Borne Disease Treatment:

I had a very long visit with my LLMD’s CNP, and could write an entire post about just that. But let’s keep it short & say because I’m not entirely convinced that Bartonella is my biggest problem right now, and am not confident in IV antibiotics, I’m going to be starting on Ketek, an oral antibiotic which will get some Bart but also the Anaplasma I tested a weak positive to. Anaplasma is notorious for causing headaches, which I have in spades.

For more on the Bartonella issue you can read Shock and Dismay: Re-visiting Tick-Borne Diseases

And Then, My Shoulder Disintegrated:

14 months ago I injured my left shoulder trying to move a bag of dog food. We first thought it was “only” a rotator cuff tear, but as time passed & the pain continued, it became apparent that there was more than that. An MRI showed I had a SLAP tear, which is a tear in the cartlidge that holds your arm bone to your shoulder blade.

As time went on, it became less painful, and because a SLAP tear repair is really difficult & involves a very tricky surgery & intensive physical therapy, I decided to just be careful with it & add it to the list of nagging issues. It was really good at letting me know when it was going to rain, and I got used to sleeping only on my right side.

But in the intervening months, I’ve continued to have muscle wasting along with the weight loss. I’ve watched in alarm as the outlines of my bones & ligaments became more visible. Lately, I’ve really noticed it in my shoulders, where muscle has faded away and body surfaces that should be bulging outward with muscle or, at the very least, flat, have become sunken & hollowed out.

I’ve tried. Everything. Protein shakes. Force feeding myself.

I’ve been so very careful.

Every single interaction with Kodi, our at-least-120 pound 2 year old dog, who we adopted last July (at 70 pounds), has been careful. I’ve played endless games of tug-of-war with him, using both hands so I could retain as much strength as possible in that arm.

But always I was watchful, knowing he could give one wrong jerk and it could make things worse. So always I had both hands involved.

But it wasn’t him that did me in.

It was the refrigerator.

I was looking for something, with my left arm resting on top of the frig door. I leaned down & tried to see the bottom shelf.

And then it happened. There was a movement in the joint, a feeling that was painful & simply wrong. I made a noise, an inhalation of shock.

I had subluxated my shoulder – a partial dislocation.

Looking in the refrigerator!?!?!?!

Luckily, I had an appointment with my PCP the next day (Thursday), and showed up with my arm in the sling.

My shoulder was kind enough to subluxate itself again as she was gently examining me. There were noises from both of us this time, since her hand was on it when it happened.

As she put it, it is likely I made a small tear into a really large tear. There was no muscle there to hold the joint in line properly. I was sent for an xray to be sure I didn’t chip any pieces of bone off but haven’t gotten the results yet.

I am beyond dismayed, frustrated, appalled, overwhelmed, and angry. And in constant pain. Every movement of my neck, hand, arm, etc, affects it.

I am also afraid.

I don’t know how on earth my poor body is going to handle surgery. Can it process the anesthesia correctly at my very low BMI & general state of dysfunction? Will it have the ability to heal? How can I do PT (which will have to be at home)?

I really, really, didn’t need anything like this. It’s hard enough just getting through the day!

And finally, yesterday the movers came, and my mom is in transit from an hour away to Houston, which will be Part 2, when I can get to it.

That alone brought a lot of changes (and furniture) into my life. Stay tuned for more!

Thanks for reading, my friends, and feel free to comment!

Risky Decisions, or, Valcyte: the Very Scary Adventure Ends

I’ve had the great blessing to meet (online) a lot of ME/CFS and Lyme/TBD (Tick-Borne Disease) patients. Many have become friends. I believe, taken as a whole, that this patient group has got to be the most medically-literate patient group around.

We have to be. There are few doctors who have a clue what these illnesses really are, or how to treat them.

So we patients bond online, from our beds: on Facebook, forums, and blogs.

We share stories, and trade information – about new studies (what few there are), side effects, and tricks & tips for living. We debate causes, deplore the lack of a cure or even a real treatment, and discuss supplements, labs, and how to live with what we call the “living death.”

We mentor & educate the newly diagnosed, mourn members of our community when they pass away, and support each other when the going gets really tough.

Outsiders looking in to our forums may be confused & lost by the medical acronyms we casually throw around, from NMH (Neurally Mediated Hypotension, also called POTS), to MPS (Myofascial Pain Syndrome), to CBC (Complete Blood Count), to GcMAF (an experimental treatment).

We “talk” like doctors, because often our only route to any improvement, or just slowing the painful, downward spiral of our illness, is to become as educated as we can, and to become advocates in our own healthcare & “medical management.”

My PCP calls this the “collaborative approach,” and I’m greatly blessed to have a doctor who is as open to new ideas as she is – many others have docs who “blow them off.”

Because we as patients are so well-versed in our illness, and living in such despair, we often choose to try (doctor willing) any medication that holds any hope of improvement.

As journalist Llewellyn King recently put it:

The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering. – from CFS: One Disease and Its Costs

When you have no quality of life, you take risks, and you try experimental treatments, or anything that holds any promise.

And so it was that I spent 2 days recently wondering if I had leukemia, before realizing it was a medication side effect.

It was a “perfect storm” of events.

I usually have monthly labwork done at my PCP’s office, but because my LLMD had ordered a huge number of labs just prior to my monthly appointment with my PCP, she didn’t have any labs drawn at my visit.

I received the result of my labwork from the nurse practioner (NP) at my LLMD’s office.

In 20 years of battling this crud, I’ve never before seen a lab come back like this. I’ve had lots of highs & lows, but never one with the test result underlined and the word “ALERT” written by it, like this:

WBC 2.5 ALERT

My WBC (white blood cell count) was 2.5, where range is 4.0 – 10.5. My RBC (red blood cell count) and absolute neutrophils were marked as low, with a number of others in the CBC running borderline low.

The NP says “Hmmm…” several times, shows it to me, and then tells me its either a lab error or “a serious blood disorder.”

Given that I’d just been discussng the severe weight loss, persistant nausea, extreme exhaustion, etc., my mind jumped to the most common “serious blood disorder” – leukemia. It would have made sense.

She told me not to worry about it too much until it was repeated (yeah, right). I had it repeated the next day, a Friday, and then anxiously awaited the results.

While waiting, I unloaded about my anxiety to the members of the mecfsforums, and received many reassuring responses when I explained the circumstances.

I then realized there was a more likely cause than leukemia, because I had made one of those risky decisions I mentioned, and was taking a medication that could cause this type of very serious problem.

14 months ago I wrote about it in a post, Valcyte: the (Slightly) Scary Adventure Begins, about the anti-viral medication, Valcyte, and my decision to give it a trial, based on studies coming out of Stanford.

I knew going in that this drug offered great promise for ME/CFS patients, especially those like myself, with high titers to Herpes family viruses, like EBV.

I also knew that it was “a drug of last resort” and had multiple “black box” warnings – it can cause life threatening side effects.

The most common side effect is a drop in platelets, which help in clotting. But, it can also cause damage to the bone marrow, causing the body to be unable to make enough blood cells, of all types. There have been people who died, or required bone marrow transplants, as a result of the damage done by the Valcyte.

That’s why we have done those monthly labs, watching for those side effects – “sudden onset severe leukopenia” (very low white blood cells), “neutropenia” (very low levels of a type of white cell), etc.

The NP I saw knew I was on Valcyte, but evidently didn’t know its possible side effects, and my PCP didn’t get the results of the labs because she wasn’t the one who ordered them.

Which left me there, copies of alarming labs in hand, mulling the situation, anxiously awaiting the results of the new labs.

Thankfully, I remembered the Valcyte’s possible side effects, and researched it online. I put a call in to my PCP, but she was on vacation (it was by then a Saturday) until Monday.

I spoke with my awesome PCP on Monday, and she agreed the most likely culprit was the Valcyte, and to stop taking it. I already had.

My repeat CBC showed a bit of a rise in my WBC, from 2.5 to 3.7, so it’s still low, but it’s most likely we caught it in time.

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.