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Gingergrrl's Journey with Famvir

heapsreal

iherb 10% discount code OPA989,
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I wanted to post an update to this thread as I am now on day 144 of Famvir (still at 1500 mg per day split into three doses of 500 mg each.) I had committed to doing a six month trial of Famvir regardless of the outcome which takes me to around the end of January. While I have not had any negative effects from Famvir, I am not certain if I have had any positive effects either.

The one thing I can say for certain that has changed is that I used to have a sickly type of fatigue in which I felt as if I had mono. I felt feverish with alternating constant chills/hot and just felt "sick" and this has completely gone away. Even when I have terrible dysautonomic symptoms, I don't feel "sick" like a flu type sick and wonder if this is b/c of Famvir?

I also wanted to report that I have an appt with my CFS doctor at OMI on Dec 23rd! I was very happy to be able to get this appt and we will be making the 6-7 hour drive up to OMI again like we did back in July. It must seem like weird timing on Christmas week but it was literally the only week that we are able to do it for a variety of reasons that I won't bore everyone with. I am excited and hopeful to go up there again and will update what happens.


Probably similar to me. That sickly feeling is mostly gone but can still become fatigued or PEM if i do too much. I probably have a mild lethargy where it feels hard to get motivated but this isnt the case because if i push myself then fatigue comes in again.

I have found if i stop antivirals, that sick feeling returns within 4 weeks, limbs become really heavy, neck glands become sore, all the other symptoms return.

thanks for sharing ;)
 

Gingergrrl

Senior Member
Messages
16,171
Probably similar to me. That sickly feeling is mostly gone but can still become fatigued or PEM if i do too much. I probably have a mild lethargy where it feels hard to get motivated but this isnt the case because if i push myself then fatigue comes in again.

I have found if i stop antivirals, that sick feeling returns within 4 weeks, limbs become really heavy, neck glands become sore, all the other symptoms return.

thanks for sharing ;)

@heapsreal I still get fatigued and can have severe PEM reactions if I do too much but I don't get the sickly feeling. What usually happens with the most severe PEM for me is I have worsening of tachycardia, shortness of breath, overall weakness, decreased energy, and sometimes severe dehydration and drop in electrolytes where I am shaky and basically bed-bound. I also get headaches and muscle pain.

I have no idea what would happen if I were to stop Famvir b/c it hasn't happened yet. It is possible that the sick, feverish mono-type feeling could return and I could be even worse off then now which scares me. I was able to go to the store with my husband today to do some holiday shopping for about an hour (using the wheelchair) and I wonder without the Famvir if I could even do this level of activity. It is so hard to know.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@heapsreal I still get fatigued and can have severe PEM reactions if I do too much but I don't get the sickly feeling. What usually happens with the most severe PEM for me is I have worsening of tachycardia, shortness of breath, overall weakness, decreased energy, and sometimes severe dehydration and drop in electrolytes where I am shaky and basically bed-bound. I also get headaches and muscle pain.

I have no idea what would happen if I were to stop Famvir b/c it hasn't happened yet. It is possible that the sick, feverish mono-type feeling could return and I could be even worse off then now which scares me. I was able to go to the store with my husband today to do some holiday shopping for about an hour (using the wheelchair) and I wonder without the Famvir if I could even do this level of activity. It is so hard to know.


when the time comes to go off famvir, you will find out i guess, but if things get worse, i have found it doesnt take as long to turn things around once you get back on antivirals??

I think to find more improvement we need to look into the neurological and hormonal side of things and get them all in a good balance, cant hurt??
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl I forget, do you "qualify" for valcyte if you and your doc want to consider it? Sushi

@Sushi I am not sure if you mean do I qualify medically or financially by my insurance? My doctor has said he will prescribe it if I want it but I am still afraid that it will be too toxic for my body to handle. Initially we decided that there was no extra benefit of Valcyte b/c I do not have positive IgM on HHV-6 or CMV so we went with Famvir. But now there are all these studies of the microglial effects so I am not sure what to think. I have had very bad reactions to meds in the past (that others seem to tolerate) so I don't know if the risk is worth it for me.

I doubt my current insurance would pay for it either although I know it will go off patent next year (I think?) and then a generic will be available. So, I really am not sure at this point. I will definitely discuss it with my doctor again to see what he thinks.
 

heapsreal

iherb 10% discount code OPA989,
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Location
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@Sushi I am not sure if you mean do I qualify medically or financially by my insurance? My doctor has said he will prescribe it if I want it but I am still afraid that it will be too toxic for my body to handle. Initially we decided that there was no extra benefit of Valcyte b/c I do not have positive IgM on HHV-6 or CMV so we went with Famvir. But now there are all these studies of the microglial effects so I am not sure what to think. I have had very bad reactions to meds in the past (that others seem to tolerate) so I don't know if the risk is worth it for me.

I doubt my current insurance would pay for it either although I know it will go off patent next year (I think?) and then a generic will be available. So, I really am not sure at this point. I will definitely discuss it with my doctor again to see what he thinks.


Give the famvir a good run then decide on valcyte. There are some thoughts that people tolerate valcyte better after using another av first.

Also some couldn't get ebv titres down on valcyte until they added famvir or valtrex. So some that took 2 different avs? ?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am not sure if you mean do I qualify medically

I meant medically, but, as you said, the microglial aspect changes that.

I do not have positive IgM on HHV-6 or CMV so we went with Famvir. But now there are all these studies of the microglial effects so I am not sure what to think.
Yes, this part might be worth risking a try.

know it will go off patent next year (I think?) and then a generic will be available.
There may be a generic from India now....@heapsreal?

BTW, this is an example of where the multiquote function is helpful.

Sushi
 

Gingergrrl

Senior Member
Messages
16,171
Give the famvir a good run then decide on valcyte. There are some thoughts that people tolerate valcyte better after using another av first.

Also some couldn't get ebv titres down on valcyte until they added famvir or valtrex. So some that took 2 different avs? ?

@heapsreal and @Sushi I am going to talk to my Dr and do the blood tests and see if my EBV titers have gone down and NK functioning has gone up. If they have, I think I will stick with Famvir for now b/c that means it has to be doing something. I remember him saying a six month trial but my husband remembers him saying we re-assess at six months and that if it is working we can do it beyond six mos and maybe even 12 mos. It will technically be five mos when I see him but I think that is close enough to assess. My memory is not great of the initial appts b/c there was so much to take in. Also, want to re-iterate that this just applies to me and not to be taken as medical advice for anyone else.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I've had 2 relapses after dentist appointments the last few months.

I felt like I had the worst case of mono; sore throat, swollen glands, horrible brain fog, couldn't even keep my eyes open. The first time I was taking 500 mgs Famvir. I upped it to 750 and within 2 days my sore throat was gone. It came back so I upped it to 1000 mgs (per my doc) and again within 2 days I was back to almost where I was.

After the 2nd relapse 2 weeks ago I was already at 750 mgs Famvir. I stopped it for 5 days to let the viruses reactivate then slammed myself with 1000 mgs. It took 3 days and I was in a lot of pain but I am out of the worst of it.

I have no plans on stopping the Famvir any time soon. My levels went down but not enough to make a difference, maybe 2 or 3 points. For me, if I feel better on it, and I do, then why go off it right now?

And someone correct me but didn't Montoya say 2 years? It was longer than 6 months I think.
 

Gingergrrl

Senior Member
Messages
16,171
@minkeygirl

I've had 2 relapses after dentist appointments the last few months. I felt like I had the worst case of mono; sore throat, swollen glands, horrible brain fog, couldn't even keep my eyes open. The first time I was taking 500 mgs Famvir. I upped it to 750 and within 2 days my sore throat was gone. It came back so I upped it to 1000 mgs (per my doc) and again within 2 days I was back to almost where I was.

After the 2nd relapse 2 weeks ago I was already at 750 mgs Famvir. I stopped it for 5 days to let the viruses reactivate then slammed myself with 1000 mgs. It took 3 days and I was in a lot of pain but I am out of the worst of it.

I am sorry to hear that and so glad the Famvir is helping you.

I have no plans on stopping the Famvir any time soon. My levels went down but not enough to make a difference, maybe 2 or 3 points. For me, if I feel better on it, and I do, then why go off it right now?

I don't think you should go off of it and I am not necessarily going off of it either, just re-assessing where my entire situation stands when I see my doctor.

And someone correct me but didn't Montoya say 2 years? It was longer than 6 months I think.

I honestly don't know and the founder of OMI trained with Montoya at Stanford and are all on the same page. I don't necessarily think that six months is long enough either and will find out more next week what my plan will be moving forward.
 

Gingergrrl

Senior Member
Messages
16,171
Like I said. I'm basing it on how I feel. I don't care what the labs say. I feel better on it.

I agree with you and I also continue to take any med or treatment that makes me feel better (and do not base it on labs!) I just want to see if my EBV titers came down or NK functioning improved after five mos of Famvir. But I think we are actually on the same page.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -wishing you much luck! I am so glad it's helped and that you got out to get some holiday gifts. You have been on it for awhile. I remember you feeling quite sick in the beginning, but that has changed! GOOD.
 

Gingergrrl

Senior Member
Messages
16,171
On the road back home now. I had a two hour appt and then gave 20 vials of blood for all kinds of tests! I am not sure that giving that much blood followed by a 6-7 hour drive was the best plan but too late now.

The traffic is horrible so we won't get home until midnight at this rate and supposed to go to a Christmas lunch with some of my husbands family tomorrow but don't know if I can do it b/c have really pushed myself this entire week.

I am too exhausted to type in detail about the appt now but it went well and nothing will be changed in my treatment plan until all my blood work is back which will take a few weeks. I am so curious to see if my EBV titers and NK functioning improved.

I told my Dr about some new treatments I had started on my own as well as new ideas I would like to try and he was open to every single thing I mentioned! I am so grateful for OMI and finding them through PR. I thought it might be slow there on Christmas week but they were busy as ever.

Sadly no shortage of ME/CFS patients...
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I had a two hour appt and then gave 20 vials of blood for all kinds of tests! I am not sure that giving that much blood followed by a 6-7 hour drive was the best plan but too late now.

You did it! Congratulations. It helps me to drink a lot of electrolytes after a big blood draw.
The traffic is horrible so we won't get home until midnight at this rate and supposed to go to a Christmas lunch with some of my husbands family tomorrow but don't know if I can do it b/c have really pushed myself this entire week.
Sorry you have to crawl through traffic. Tomorrow will be what it is. I'm sure your family will understand if you need to rest. Or, "be a Roman!"
upload_2014-12-23_18-27-57.jpeg
 

Gingergrrl

Senior Member
Messages
16,171
@Sushi thanks for all your support. we keep losing internet/phone access in the car b/c of the mountains so probably won't post much more today.