I thought I'd follow Brita's fine example of posting her journey with Valcyte so others can follow and learn. Brita, thanks so much for posting your story, you have blazed the trail for me and others who are starting this drug.
My viral test results can be found on this forum under HHV-6 testing. It was determined that my titres were high enough to warrant treatment with Valcyte, so I started the drug today.
I took my first dose (900 mg) at about 7:15 this morning with breakfast. I was feeling decently until 11:00 a.m. at which time I felt like I'd been run over by a truck.
I would take this as being a side effect of the drug, and not any kind of die off of the viruses at this early date.
But, wow! I'm sure hit hard!
I'll post in a week what else has happened. It should be an interesting journey!
I'm only 24hrs ahead of you with the treatment. My energy level is going down by the day and I've experienced tachychardia too....and it usually happens when I'm napping. It will wake me out of a sleep and scare the bejeezus out of me!
I think that the one side effect (besides the fatigue) that bothers me the most is the headaches.
My labs came back fine after my first draw too...so I'm thankful! I'm sorry you got bruised up!! Ask them to use butterfly needles if they've got them....they're a much small guage and rarely leave a mark.
Take care and try to enjoy a little bit of sunshine this weekend
I started on the 9th I'd made so many preparations ahead of time in case I was hit hard right from the get go. Fortunately, that didn't happen. Just today the body aches have started to set in. It seems to be settling in my lower back and hips...very much like having the flu. I'm prepared for this to get worse, but it's never fun!!
I'm not sure what my wbc came in at this last time...I don't know what my baseline was either. I'll see the doctor on Wed and plan to find out. Her office called me on Thursday and just said that everything came back fine. Anemia runs in my family, so I'm a little concerned about my rbc falling too low.
I've heard that easy bruising is common on Valcyte...so maybe that's got something to do with why you've bruised so much.
I usually check the forum daily, so feel free to post away and we can compare!
Brita~ Thanks for the good wishes. I've enjoyed reading your posts. Especially the shopping cart/car encounter!
Dee Dee~ I've not had noticable headaches from the Valcyte. I am sorry that you do. I do get bad headaches....but this is part of what I'm sick with, not from the Valcyte.
Regarding your anemia concern.... We will be getting lots of blood taken from us over the next 6 months. Ask your doctor to run a "ferritin" level on you. Ferritin is a measure of the iron stores in your body. I was very anemic for some time, and the iron disorders doctor that worked with me said that any ferritin level less than 50 ng/mL meant that the body was deficient or depleted in it's iron stores no matter what the reference range of the lab was. My ferritin level was 5! And that was after 4 months of iron supplementation. You can track your ferritin level...that will fall before your Hct and Hgb fall. And you and your doctor can decide if you need iron supplementation or not.
I had my second blood draw and interestingly enough, my monocyte level went from 6 to 2!!! This is outside of the reference range. Dr. Montoya does state in his study that one patient had an 80% drop in monocytes....so I guess this can happen. My other labs are within the reference range.
I've had a couple of times where I just couldn't function this past week. My family had to go to church without me. I just laid on the couch. Another time I noticed that something needed doing (like a fence board that should be nailed back up for it had fallen down) and my thought was "gee, that's too bad." (I had no stamina to even think about finding a hammer and nail!)
It will be very interesting to see if I really "crash" in the next week or 2 or 3....as is described in Dr. Montoya's paper. I certainly am down a notch from when I started the medication!
That's the report from this week. I look forward to hearing how others are doing.
I've completed day 17 and can't complain too much at this point (which kind of worries me!). The headaches have subsided and I do have a bit more energy over the last couple of days. My mornings & evenings are still the worst and I'm having a bit more trouble sleeping....not to mention the weird/BAD dreams!!
One thing that has begun are little blisters popping up in random places. Some itch, some don't..kind of strange! They don't burst, but just kind of go away after 24-36 hrs.
Every couple of days I feel well enough to run one small errand...blood draw, bank, pharmacy...but nothing more than that.
That's about it for now....I hope everyone is faring well.
Dee Dee~ Your headaches have come to visit me! Shortly after I wrote my last post (which stated headaches hadn't been an issue), I went to bed. I got a whopping headache which kept me up for 3 hours. When I got out of bed to use the bathroom, I was quite dizzy and disoriented. I was also nauseated, and had a slight bout of the chills. The headache continued through the next day and was quite severe. Yesterday, and so far today, just a mild headache. Which I'm grateful for!
Those blisters sound very bizarre!
I think I'm functioning slightly higher than you. I can usually run one errand at least a day, if not more. I do feel poorly, but can get the errand done.
Hang in there Dee Dee....it was nice to get your update! Have your labs stayed normal?
I've completed the 3 weeks of 900 mg Valcyte twice a day. Today I dropped the dose to 900 mg daily. I have tolerated the drug reasonably well.
The severe headaches lasted for just two days, day 14 and 15 of starting the valcyte. The rest of the week wasn't too bad.
I did develop swollen lymph glands in the left side of my neck 2 days ago. I think this is likely due to a cold that my body may be fighting. My son and husband have been ill. Too bad the Valcyte doesn't keep me from catching the viral infection running through my family!
My monocytes have stayed below the reference range at 2%. My WBC dropped from 5 to 3.9 k/mm3 this past week. (Reference range 4-11).
One symptom I would like to mention in case others have it and wonder if it can be caused by viruses...the answer is yes it can. I asked this specifically of the ID doctor that is treating me, as I had thought this to be a lyme symptom. He said that viruses can cause the same symptom.
I can get episodes of full body muscle pain, and joint pain, accompanied by pain in a large joint that is quite severe. Recently I've had 3 episodes, one involving the hip and two involving the right shoulder. These episodes last for 3 days. On day 4, the joint that was killing me is now FINE. It is really quite surprising.
So, just for info...apparently lyme and viruses can do this to a person.
So glad to hear that you're doing good....I am as well. My headaches have FINALLY subsided. I do still get them every few days, but they only last for a few hours. I'm getting occasional blisters still, but nothing to really complain about. I've noticed a mild sore throat and occasional swollen glands.
My energy level, as Brita says, waxes and wanes. Some days are good and others I spend napping. My blood levels have remained at or above normal...I'm surpised they haven't really dropped at all. My internal medicine doctor is happy with it too.
Have you or anyone else figured out the best way to handle getting your appt's with Dr. Montoya scheduled? I have to say that it's like pulling teeth to get scheduled and sometimes the staff is not very nice, to say the least. I'm still waiting for him to open his Sept clinic days so I can get in when he's asked to me next. I worked in physician's offices for many years and have never experienced anything like this!!
Wednesday was the end of week 5 for me and things seem to have taken a downturn this week. I was doing really well over the weekend and actually felt well enough to go out to dinner. I'm not sure if this was my demise, but by Sunday night or so, I started feeling bad again and have gotten gradually worse every day since then.
I'm weak, shaky and nauseous again....also have a rapid heart rate a few times a day....something that I really haven't had for quite some time. My energy level is at about a .5-1 and I'm back to being in bed for most of the day. The headaches, sore throat and achiness have also returned. I'm not sure, but I'm thinking that the sinus issues I've been having I can attribute to this as well.
Thankfully, my labs are all ok. Everything has stayed pretty much within reference....my rbc did fall out a bit last week, but has returned to normal as of Wednesday.
I'm sure I will come back out of this slump soon!
My thoughts are with all of you and wishing everyone a speedy recovery!
Hi deedee~ I'm so sorry that you have taken a turn for the worse. I can only hope that this is a good sign for you...that die-off of the viruses is what is making you more ill. I hope for an upward turn for you soon.
I'm finishing up my 6th week on valcyte. Yesterday (and today) I have a significant headache. I also had the chills yesterday...and this was when I had a fleece jacket on AND was lying under a comforter trying to rest. Now...it has been a bit cool where I live, but I thought it unusual to have the chills when I was so well bundled. I did turn the furnace on today!
I've also had several days recently when I've been waking way too early (read: 4 a.m.!)
I stopped the minocycline that I've been on for Lyme disease this week. The reason being that if I continued to take it and got well; then stopped both the mino and Valcyte and relapsed, it would be difficult to know what got me well and what to put me back on. This way we can see if the valcyte alone can make me well.
We'll see. It would be nice if something could make me and other here on the board well.
Dee dee....I think we need to change this thread to Timaca's and Dee dee's valcyte Journey. What do you think? If you're ok with that idea, I'll see if I can change the title....
I've just finished week 7. My WBC has decreased (again) to 3.9 (which is below the reference range). It had dropped to 3.9, then increased to 5.4, now it has dropped again. Hopefully it won't decrease any further.
It seems that my fractured sleep continues as does headaches that happen most every day (but don't stay all day).
Today I'm particularly fatigued.
My cardiologist relayed the "good news" yesterday that my heart seems stable. The echo and EKG are unchanged from last year, and my "irritable heart" symptoms aren't noticeably increased.
Deedee~ Missed your post recently. This is now both our journeys so I'd love to hear from you!