Any experience with valcyte? Please?

[Nabo]

Hi everyone,

Next week i have to go to Brussels again, to see my docter KDM.

I am already 1 year in treatment and last summer we discoverd that i have an hhv6 infection.

I already saw some storys about valcyte, but i am almost bedridden and cant stay long with the computer.
So my question, can somebody say anything about there experience with valcyte???

Or give me a link to storys about it?

I am from holland, and on that forum only 2 people use it, so i really want more experiences because this treatment is so expencive.
So i really need to know if this is a good decision and i my body can handle this heave drug.

Please someone any experience??? Or know someone who is taking valcyte?

Thanks very much

 

[heapsreal]

http://hhv6foundation.proboards.com/index.cgi?

 

[ukxmrv]

Do a search on this forum and you'll find threads from people taking Valctye. I've also tested positive for HHV6 and would like to try this - but even the generic form is too expensive for me. I've been taking Valtrex for over 2 years and have had some limited success from that for other herpes family viri.

 

[SOC]

You can read some of my family's experience with Valcyte here: http://forums.phoenixrising.me/showthread.php?6706-Valcyte-(plus)-Update

My family has had excellent experience with Valcyte, but I know that is not true for everyone. My uncle, who had mild ME, considers himself cured and has been off Valcyte for 3 or 4 years and is still fine. My daughter who was moderate/severe has been in remission (and off Valcyte) since about last August after 18 months on Valcyte. I was bedbound when I started Valcyte almost 2 years ago, and am substantially better, but still largely housebound. I'm still taking Valcyte.

I'm assuming you're getting the Valcyte prescription from KDM who should know how to monitor correctly. You need very careful frequent monitoring for potentially dangerous side effects.

My daughter had no noticeable side effects from Valcyte. My uncle and I both had periods of what look like IRIS reactions http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome, which were unpleasant but once we got through them, we felt a lot better. I would go through it again to get the same amount of improvement.

If you've been in treatment with KDM for a year, you've probably dealt with other coinfections, which I think is a good idea before taking Valcyte since you want to give it the best chance of working.

My daughter will be in Belgium for 2 weeks over the holidays to meet her boyfriend's family. [raised eyebrows] She doesn't speak Flemish, but her boyfriend speaks some and is a native French speaker. They might be able to meet with you, if you think it would help hearing in person from a person who had excellent success with Valcyte.

 

[Nabo]

Thanks all for the info.

@ SOC, Tnx ! (first off al sory for my bad english)
That sounds very good.
But that is terrible! you are sick, your daughter and uncle! wow..

I would really like to meet them, but i dont know where he lives?? But i live a 2,5 hour drive from Brussels.

So you suggest that it is best to start valcyte after the coinfections are gone?
I am still waiting for some tests, but the only other infections i have are molds/fungus.


@ UKXMRV, Can you tell me more about the difference between, valcyte, valganciclovir and generic????
I really dont understand???? What is the best??

 

[ukxmrv]

Nabo, the generic versions are copies made by other companies abroad. The one I buy is from a company in India. I don't know how similar they are as I've not seen any independant tests. When we buy these copies we take risks. They are sold on the internet and often without a prescription.

If I could afford to take the named, branded original products I would take them instead.

 

[SOC]

Thanks all for the info.

@ SOC, Tnx ! (first off al sory for my bad english)
That sounds very good.
But that is terrible! you are sick, your daughter and uncle! wow..

I would really like to meet them, but i dont know where he lives?? But i live a 2,5 hour drive from Brussels.

So you suggest that it is best to start valcyte after the coinfections are gone?
I am still waiting for some tests, but the only other infections i have are molds/fungus.


@ UKXMRV, Can you tell me more about the difference between, valcyte, valganciclovir and generic????
I really dont understand???? What is the best??

No problem with your English.

They live in Namur which is undoubtedly farther from you than Brussels.

Yes, it is bad that we have had ME in 3 generations of my family so far. We have also had Hodgkin's Lymphoma in 3 generations. It certainly makes me wonder if we don't have a genetic problem with the way our immune systems handle herpesviruses.....

I could be wrong, but it seems to me that the people who have the best results with Valcyte don't have lots of other infections. Since Valcyte is so expensive, I would want to make sure I was getting the best results possible.

I would trust KDM. If he is suggesting Valcyte now, it's probably the right time for it.

 

[Nabo]

thank you.

oh yes that is really far away for me.

also 3 generations of hodgkins??? woow.. that is really bad.. im sorry!
Yes i think that is case... pfooe! best of luck.

mm ok thanks for the info. i will see KDM monday so i have a lot of questions!! excited!!
I will ask if he wants to screen me again for other infections.

- another question: my liver is very bad (ALAT & ASAT very high) is that a problem?
i heard you have tot test your liver and kidneys a lot.. but my liver is already bad ???