1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Valcyte 2013-Week 34

Blog entry posted by RUkiddingME, Sep 1, 2013.

Week 34:thumbsup:

Well guys you guessed right! I haven't been updating my blog because I am too busy living, what a feeling!!!

Having been stuck in a house for 3 years, unable to do anything, the majority of the time being mostly bedridden and unable to look after myself, this improvement is miraculous.

I have improved since my last update. Still hard to say what level I am functioning at because I still can't drive and still need my wheelchair. The great news is that I can now walk about 100 steps round trip. Last winter the furthest I could go is from my "green room" to the washroom which is about 6 steps.

Since my husband had not used any vacation time in so long because of me, he had lots of time off this summer and we decided that our 16 year old daughter could go another summer without a job so we could catch up on some quality family time "outside the house"

We took a coast to coast two week vacation, visiting family and I did great!! I still very much need my afternoon naps which I took every day. The best part of the vacation was during week 29 when I finally regained most of my cognitive function back! We were driving along the coast and I found myself being able to have my eyes open and look around ( what an amazing feeling). :nerd: I even went for a kayak ride twice! With my husband paddling and me looking like the lazy wife in the front.:whistle: On one of the short trips there were seals and their babies following us and I could enjoy all of it. Many tears of joy were spilled on this vacation.

Unfortunately after getting home I crashed a solid two weeks, I was really scared I wouldn't bounce back but I did!!:ill:

And did two mini weekend getaways since.

I still tolerate the Valcyte extremely well and my labs had been ok with a small dip in my WBC and neutrophils last month. My lipase level also started creeping up again (remember my first blog post). My doctors didn't think it was related to the Valcyte. Anyway I had two abdominal pain episodes that woke me up in the night and saw my doctor who thought it looked like gallbladder issues, well last week I ended up in the ER and turns out I had pancreatitis. The ER doctor attributed it to the wine I drank with dinner on our weekend getaway and the Valcyte. So no more wine for me!!!

Getting blood work weekly until lipase comes down, I really hope it doesn't mean it's time to stop the Valcyte because I only have over 4 months left to finish my 12 months.

GREAT NEWS- NK cell results are in!!:thumbsup:

Before the Valcyte I was at 9 LU30
3 months on Valcyte 11 LU30
7 months on Valcyte 22!!!!

Ideally my doctor wants me to go up to 60 so hope I keep going up!

Well that's it folks, just one very happy girl here!!!
Next time I post an update I might even be able to drive!!

Attached Files:

RUkiddingME

About the Author

My 2013 Valcyte experience
  1. RUkiddingME
    @jimells thanks you! The magic started happening at week13. If you look at my blog post of week 15 there is a recap of the different stages of Valcyte I went through before the magic began. I wish you the best of luck on Valcyte and glad your insurance company is on board :)))
  2. jimells
    This is really good news. I liked the photo of your family. Everybody's smiling!

    How long did you take the Valcyte before you noticed an improvement?

    After two months on Valtrex with no improvement, I asked the doctor about Valcyte, and she agreed to let me try it. The insurance company approved it with no hassle, an unexpected bonus for sure. After two weeks, I haven't noticed any adverse effects, except for increased night sweats, which might not be related to the medication.

    I've heard pancreatitis can be very painful. Hope you recover from it soon.
    L'engle, heapsreal and RUkiddingME like this.
  3. Ruthie24
    This is so exciting. So glad to hear you have had so much improvement with the valcyte and have been able to get out and enjoy the summer with your family. That's fantastic! Hope you're able to continue for the year that you're aiming for on the treatment. Best Wishes!
    RUkiddingME likes this.
  4. RUkiddingME
    Thanks Heaps! Yep I have been on NAC as per your suggestion ever since starting Valcyte. Thanks for all your useful suggestions!! Good luck to you. The yellow monster just reflects who I am, a goofy sick person who doesn't take herself too seriously! lol
    heapsreal likes this.
  5. heapsreal
    good on you.
    Your a spunk, what are you doing with that yellow monster for your profile pic??
    What are your future treatment plans? Stay on valcyte as long as blood owrk is good??
    Im planning to go back on inosine or immunovir soon to help increase nk numbers and then lithium orotate to help increase my low neutrophils.
    Do u use any supps like NAC as this may help with pancreatitis issues??
    Good to here your improving, i hope u continue that way even further.

    good luck,
    cheers!!!
    RUkiddingME likes this.