Topic: the use of valcyte and your llmd- please share
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
most of you know the dr i see in NY and we are considering a trial course of valcyte for me in the near future..
he is looking for other llmds who are using this for their patients and are finding success after 6 weeks of therapy or more as opposed to stopping treatment after 6 weeks if no positive response to therapy is seen.
if you could share with me your doctors info so my dr could contact him/her id appreciate it.
feel free to post any information and PM me the doctors data if you would.
also, did you meet any of this following criteria? i am told this is standard for the use of valtrex therapies in the chronic lyme patient.
1- initial onset of symptoms were flu like illness including fevers, chills, etc
2- primary or one or worst complaints is profound fatigue
3- multiple elevated herpes titers as well as other viruses, etc (cmv and so on..)
i am being told the patient does not "have" to meet all these, but having 2 or more usually proves to have a more favorable outcome if therapy is administered for the patient.
thanks much
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi.
I suppose I met the criteria for 2 and 3.
I did 8 months of valcyte.
However, I didn't notice this "huge" difference in symptoms.
My LLMD does a survey of all who have been on valcyte.
Some have indicated great progress.
Some like me......nothing really noticeable.
I am not sorry I did it.
Just hated all the blood work I had to keep up with.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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TerryK
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posted
Has your doctor contacted ILADS to get information about this? I would think that would be the best source of information.
I've been on valtrex for quite a long time. I've considered Valcyte but couldn't take it due to elevated liver enzymes. I may ask my LLMD again if he will prescribe it now that my liver enzymes are good.
I'll ask him if he treats very many patients with it. If he does, I'll let you know.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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djf2005
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Member # 11449
posted
thanks terry no he is part of ilads, he is the "east coast dr h"
he knows about the standard requrements, etc, that are provided but is looking for examples that are out of the box such as people who respond after 3 months or so.
for those of you that responded, did you experience any herxing on valcyte?
thanks for the continued info.
terry could you PM me your doctors info? thanks
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i have not heard of anyone getting worse on the drug nor that it is toxic, just that some dont see any difference on it.
i have read the info at hhv6 foundation, im more interested in its application to multi active virus patient and how it relates to those with chronic lyme.
ive not heard of anyone who became toxic with the drug, from my understanding it is less harsh than most abxs we all endlessly take...
thanks
derek
ps- i need patients and their doctors info, not organazations ideas and protocols.
posted
My LLMD and I are about to "experiment" with Valcyte - I am his first patient he has ever prescribed it for (in fact, I introduced him to the Stanford CFS study and use of Valcyte entirely). It may be several weeks before I can actually fill the prescription, as its roughly $6000 for a month's supply, provided my insurance will cover it at all. Some questions for those who have taken it.
1. Did you have verified EBV, CMV, or HHV-6 titers? Did they come down during the treatment process? Was this lowering accompanied by an improvement in symptoms?
Are there any of you out there who are taking it who do NOT have high HHV-6 titers?
2. What dosage did you take, and what frequency? How long is your planned course of treatment?
3. I'm sure all that have taken Valcyte know that it was originally developed to treat CMV as a result of AIDS or organ transplant. Reading over the prescribing information, it is a /very/ scary drug and is said to be carcinogenic, teratogenic, and leads to temporary or permanently impaired fertility. It also has an extensive list of severe side effects. However, as the only people the drug was tested on were in extremely dire condition, I have a feeling that many of these side effects are the result of introducing the drug into their compromised system.
What side effects have you experienced? Has it been a particularly difficult drug? Have you experienced any of the "scarier" side effects, such as retinal detachmen, listed on the prescribing information.
4. Are there any who have seen an improvement with Valcyte, either on lab results or subjectively, that was NOT present when you tried another antiviral such as Valtrex, Famvir, or Acyclovir?
5. For those who's insurance covered it, what diagnosis was used? Were they willing to cover it for chronic viral infection codes? Lyme diagnosis? Did anyone get denied because they were NOT an AIDS or transplant patient? Even worse, did your insurance decide that you WERE an AIDS or transplant patient because you were prescribed the drug
Your experiences are greatly appreciated. I need to gather as much data as possible on this.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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djf2005
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Member # 11449
posted
scott thanks for the info, appreciate it
blackstone there are many other active threads where you might be able to find the information you are requesting.
the study you cite @ stanford was for cfs, although i wonder how many of them had/have lyme as well..
i am specifically looking for patients and their doctors info.
its rather frustrating on LN sometimes when one gets every kind of response except for the one they are looking for!
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Is he looking to switch from Valtrex to Valcyte? I've read somewhere that Valcyte is more effective and I've been thinking of asking to have the script changed.
He's had me on Valtrex for a little over a month now. No changes so far, either way.
Slightly elevated liver enzymes... again. Those could have been also caused by the zith, which I'm off now. Next blood test in a couple of weeks. We'll see.
btw, I meet all 3 criteria.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks curious, can u pm me your dr info?
also, ive not been on either except valtrex for 2 weeks and that was with another dr so if we do infact try a course it will be valtrex and most likely 3-6 month minimum.
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
> 1- initial onset of symptoms were flu like illness including fevers, chills, etc
Yes, but, not including chills.
> 2- primary or one or worst complaints is profound fatigue
Yes.
> 3- multiple elevated herpes titers as well as other viruses, etc (cmv and so on..)
Yes.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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CD57
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Member # 11749
posted
PM sent.
Interesting note: the Stanford ID docs, and my LLMD who uses it too, do a "loading/induction dose" for the first 2-4 weeks. After that, they drop down to half that and continue therapy for the remainder of the period (Lyme patients I know of have done 4 months, Stanford did 6-7 months for CFS study).
Posts: 3528 | From US | Registered: Apr 2007
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timaca
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Member # 6911
posted
derek~ You need a much longer course of valcyte than 6 weeks. It took 16 1/2 weeks, then BAM I saw noticable improvements. I was on it for a total of 9 months.
I had high antibody titers to HHV-6 (1:640). For more info on HHV-6 see www.hhv-6foundation.org.
Your doctor may be interested in this link. Dr. Montoya is presenting at the HHV-6 conference: http://scivee.tv/node/7965/video (scroll down until you see Jose Montoya)
Yes, I presented with flu like illness (also tachycardia); I did have elevated titers to multiple viral pathogens (my story is on the patient's forum at the HHV-6 website--I'm Timaca there too). Fatigue is definitely a problem as are many other things (muscle pain, nerve pain, head pressures, headaches, brain fog, etc).
I'm currently on acyclovir for viruses and doxy for Cpn (chlamydia pneumonia)...yes, get tested for that too!
I am significantly improved from both antibiotic and antiviral therapy.
Derek~ Feel free to PM me...I'd be happy to talk to you or your LLMD. Your LLMD might like to talk to my doctor overseeing my care.
Blackstone~ Yes, my antibody titers to HHV-6 and EBV fell nicely while on valcyte, and I felt significant improvements. They went up when I came off valcyte, and went on doxy for the Cpn. So, I'm on acyclovir to try to knock them back down again. Enterovirus may also be an issue for me...
My insurance covered a great deal of the drug. There is now a diagnostic code for HHV-6 illnesses, it is posted on the website. My story is on the patient's forum...I'm Timaca. You'll find lots of posts from me there.
I believe the Stanford Trial screened their patients for lyme.
I'm really glad that the LLMDs are beginning to look at these viruses too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks timaca it says months, not weeks.
dr h knows about montoyas stuides he is just hesitating to change anything right now.
thanks for all the references, hopefully he changes his mind soon
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Just a note--Stanford said they screened their patients for Lyme, but they used Focus Labs and Quest to do it. Guess what the results were?
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