CMV infection, anyone ?

[someone2021]

i have crohns and recently diagnosed wit CMV duodenal disease.

i used to take valcyte 900mg 2 times a day for 3 weeks. now just once daily for the coming 9 weeks.

after im done with treatment, the doctor advised me to do weekly lab testing for CMV and only to treat when its positive.

and that requires me to skip few hours from my job to go to the hospital to have the test done, and that's not a good idea because i just started working in this new job.


anyone else having a problem with CMV ? how did you deal with ?

 

[David]

Hi someone,

Sorry you're having trouble. And I'm also sorry you haven't received any responses I'm going to bump this thread so hopefully someone can provide you with some insight.

Out of curiosity, do you have any symptoms that are attributable to CMV? I know tons of people have it but most don't exhibit any symptoms.

 

[someone2021]

Hello david, and thanks for your support

We all get CMV during our teenagers years, but we don't know because its symptoms are like a bad flu. The virus stays dormant in our bodies, and once your immunity is down, it hits you

I was in high dose of steroids and imuran, and my CMV was re-activated and it gave me a very high fever for 10 days , and fatigue that I'm still suffering from ( fatigue may last up to 18months)

CMV infection, is when you find the antibodies in the blood, it's easy to treat, just lower the immunosuppression and your body will take care of it

CMV disease is when you find the virus or it's particles in a tissue (in my case it was the duedenem) Treatment is with VALGANCYCLOVIR either tablet or I.V and a lifelong monitoring the CMV activity

it's very common in post transplant patient, but not crohns


Thanks again

 

[David]

Interesting, thank you for the education I hope you feel better soon!

 

[Sparkle2012]

Yes that was something I was concerned about and it was good information. I worked with a person for one year who came down with CMV -- she was just run down from stress and working too hard - and it emerged!! She is really not better after several years and I wondered if I should be worried about taking Humira after that exposure? Another question for my doctor - I have many questions and only one week prior it starting Humira.

 

[R20]

Sorry to comment on an old post but this is highly relevant for me right now.

To the above. Did your CMV continue to cause issues or did it go away?

Quick background:
Crohns, Ileostomy 15 years, but had revision and proctectomy Jan 2015. Been on Infliximab for 14 months & 6Mercaptopurine.
Just when i thought i'd recovered from the surgery i got fevers, nautia, slight appetite loss, fatigue, muscle weakness and generally felt like crap. Had a wound abscess so that was treated and expected to fix it. However after 10 days of the fevers they figured out i had Active CMV. Currently on Valgan..... Valcyte. This reduced symptoms within days. Overall a 3 week dose i am halfway through. They delayed my inflix infusion for a couple weeks but otherwise expecting no furhter changes to crohns medication. I can't get anymore crohns in the ileum or I'll be screwed.