Valcyte 2014. Round 2 week 9

Hey guys just a very brief update. I originally started Valcyte January of 2013. My doctor origininally didn't want me on it for more than 6 months but since I tolerated it so well, I was able to stay on it for a total of 15 months which brought me to April 2014. I have to say that between October and April there was no more progress, long story, carbon monoxide issue ( see previous blog post). I was off Valcyte for 2.5 months. I had a follow up phone visit with my specialist at the end of June of this year who decided I could go back on Valcyte to try and jump star my immune system again.

During the first round of treatment I felt no different for the first six weeks. Weeks 7-12 were terrible and bedridden the whole time until I blossomed into a new flower on week 13. :angel: It was uphill from there until the carbon monoxide issue...:grumpy:

I was only off the Valcyte for 2.5 months and it seems I have to restart the whole process all over again. I'm starting week 10 tomorrow and the past three weeks were the absolute pits. :ill:

I was up all night last night with bowel spasms. Sure enough I check my journal from last year and I had bowel spasms for a week during week 7 so I still have a few weeks to go before I blossom into a flower or crimple up like a dried up old seed lol. :zippit:My only hope is that I bounce out of this and not made myself worse by going back on the drug. I'm resting plenty though (no choice).

The good part is that although Im in crash mode, mostly housebound, feeling absolutely awful and spending a lot of time in bed, I am still in better shape than Pre-Valcyte, round one when I was completely bedridden and unable to look after myself at all.

If I had known I was restarting the whole process again, I would have pushed to not come off the Valcyte after the 15 months.

Like a lot of us I am taking way more steps back than forward with this horrible illness but what counts is that I keep taking the steps:thumbsup:

Comments

I follow your blog and appreciate the updates and your fighting spirit. I am on Famvir vs. Valcyte but can relate to a lot of what you share. Best wishes and look forward to your next update.
 
Hi! I just read through your Valcyte experience. Thank you for your detailed blogs and your positive attitude. I have elevated HHV6 titers (1:1280), and am trying to get my doc to put me on Valcyte. Your story gives me hope, which is something I've been sorely lacking lately. I wish you luck with your journey, and I'm looking forward to your next post!
 
I will update really soon, I'm doing better but don't want to jinx it:). If this progress sticks around until the end of next week I will share the good news! :)
 

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