Starting Valcyte today!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by needtobreakfree, Apr 1, 2014.

  1. I have been mostly bedridden and totally housebound for a few months now. Before getting sick I was a perfectly normal functioning human being. The last few months have been torture. I have an active infection of HHV6 and also I have some high titres for EBV so that may be a contributing factor. Anyway, today I begin Valcyte. I hope so much this helps! I'm not sure if I want to start with the full 1800mg per day or start with 900mg and see how it goes. Probably tonight 900mg. I'll keep you updated!
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  2. IanH

    IanH Active Member

    You will need to be on this for many months, probably 6 months to ensure the virus activity is lowered enough.

    Given that it is a long term treatment 400 to 500 mg twice daily is sufficient. The advantage of the initially high dose is to lower the viral activity more quickly. However valcyte is quite well tolerated in most people. Good luck with the treatment.
  3. Mikie

    Mikie Moderator

    Good luck to you. It took 1 1/2 yrs. on an AV to get whatever Herpes-Family Virus lives in my body. Recently, my allergies got so bad and I got another virus going around and my HFV reactivated. It never goes away and rears its ugly head if I get sick or run down. I keep Acyclovir on hand and take it until it drives the HFV back into latency.

    Good luck to you. BTW, there is an article on the Home Page here where the once-thought lowly Herpes Simplex may cause people with our illnesses to be chronically ill. I think this applies to all the HFVs. We never identified the strain(s) which make me sick. My HMO wouldn't have paid to find out. It's kinda moot anyway as the treatment is basically the same for them all. I did take transfer factors in the beginning for a while in lieu of the AVs and I believe that was a turning point. The TF's targeted HHV-6.

    Again, good luck to you and keep us updated.

    Love, Mikie
  4. Thank you for your replies. So today is Day 6 on Valcyte. Day 1 was slightly rough. It made me very tired and I had a tingly nerve pain and burning in my back after the first dose. After the second dose that evening, I was only tired but didn't have the nerve pain. Now it only makes me tired in the evenings and when I wake up I'm a little tired. I haven't hit that period of increased symptoms that begins between weeks 2 and 5 yet, that they talk about. Not looking forward to that, if it does happen. Already I've seen improvement. The numbness in my hands has disappeared and my arm strength is better. I've been so severely weak and bedridden that I notice even slight changes in energy level. There is no doubt that I have already improved, although I have a long way to go to be a functioning person but I'm very encouraged by the results so far. I'll keep you all updated, because I know when I decided to try Valcyte, I was searching the forums to learn about the experiences others have had, so I wanted to be sure to put mine out there as well. One thing I was worried about was that I didn't read too much about people physically improving on it, mostly I read that it was helping with brain fog, etc., but my biggest challenge is my physical weakness. So far it does seem to be helping, I am getting a little stronger every day.
  5. IanH

    IanH Active Member

    Can you tell me what the reason for putting you on Valcyte is?
    Do you have active CMV?
  6. I am taking it because I have active HHV-6.
  7. Mikie

    Mikie Moderator

    I'm so happy it is helping you. Best of luck and keep us updated. I think chronic HHV-6 is far more common in us than previously thought. My Acyclovir doesn't seem to be working well so decided to do the transfer factors for a bit. They always worked very well for me.

    Love, Mikie
  8. Hi all, quick update. The Valcyte is working amazingly. I've been on it for more than two weeks now and I can finally actually walk around the house already. I've been bedridden since December so my legs don't work all too well yet, but I can actually get up and walk at a snail's pace to the kitchen. I was trying to get up to the induction dose of 4 pills per day for the first three weeks, but never got to more than three. Even three was making my side effects too intense, so I've found that two pills really is the right dose for me, as some here on the boards have recommended. I make progress daily at this dose and my system doesn't get too overwhelmed. I'm so so happy, I'm just mad at myself for not doing Valcyte two months ago. I still have a ways to go, but progress has been swift. Please let me know if you have any questions. I want to help others who are having similar issues.
  9. FibroJune

    FibroJune Member

    So happy for you! Keep us updated.
  10. I was reading these posts again and wanted to mention to Mikie that my HMO also didn't pay for any testing or for the meds. I had to give up my apartment and move in with my dad and spend every dime of my disability check on my meds and appointments. :(

    So an update... I'm still bedridden but have made some progress. Although I'm still bedridden, I had a huge hole to dig myself out of with this illness. I have an active HHV-6 infection with a high viral load of detectable viral DNA, and was pretty close to death in December/January/March. Now I can situp on the couch sometimes, but have to get there with a wheelchair. I only leave the house for doctor appointments, but I can bathe now at least every other day, although it's not easy. I'm severely deconditioned from five months in bed but also have weakness from being sick and a severe fibromyalgia type of unrelenting pain that leaves me barely able to use my arms.

    Today the Valcyte is giving me some of the bad side effects I get sometimes, so I feel extra weak and it's an annoying fatigued feeling in my abdomen. But still there has been progress which gives me hope. With as sick as I've been , I often wonder how long it will take to be "normal" again. Before getting sick a few months ago I worked full-time and worked out, went out, etc. It's a battle every day to keep my optimism, but I know how important it is.

    But compared to pre-Valcyte, I'm already doing better. I think I'm about seven weeks in or so on the meds. I'm hoping for big gains in the coming weeks. I'll keep you posted. Thank you for rooting me on. I really appreciate it. :)