My Famvir Adventure

heapsreal

heapsreal

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10,234
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australia (brisbane)
SDSue said:
One month of Famvir, and I'm in a crash. It's been coming for a week or so, and I've been trying to ignore it. Now, I'm back to bed and hoping this will pass. And to think I was hoping for a smooth and rapid improvement - I must be nuts.
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Take note of severity and length of your crash. Avs if they work for you should reduce the severity and length of the crash.

Try to remember that viruses reactivate and replicate. Avs only step them replicating/multiplying but the viruses can still reactivate ie do their thing by waking up out of a latent state and doing their damage.

But the good thing about them reactivating is that Avs can have an effect on the virus. But Avs don't have an effect when the virus is in a latent state.

Overtime the amount of virus is reduced, so crashes shouldn't be as severe or last as long. Possibly overtime the immune system will be able to manage the virus as it's a much lower load.

that's the theory and so far appears to be my experience.

I hope this helps and gives you some positive thoughts on your current crash. Rest up.

Good luck.
 
SDSue

SDSue

Southeast
Messages
1,066
heapsreal said:
Take note of severity and length of your crash. Avs if they work for you should reduce the severity and length of the crash.

Try to remember that viruses reactivate and replicate. Avs only step them replicating/multiplying but the viruses can still reactivate ie do their thing by waking up out of a latent state and doing their damage.

But the good thing about them reactivating is that Avs can have an effect on the virus. But Avs don't have an effect when the virus is in a latent state.

Overtime the amount of virus is reduced, so crashes shouldn't be as severe or last as long. Possibly overtime the immune system will be able to manage the virus as it's a much lower load.

that's the theory and so far appears to be my experience.

I hope this helps and gives you some positive thoughts on your current crash. Rest up.

Good luck.
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Good advice, heaps. I'm trying to remember to rest more during this early AV treatment, but with the holiday I've overdone it (again).

If I understand correctly, when I'm in a crash it's possibly due to the viruses reactivating, and during reactivation is when the AV leaps into action? If that's the case, then it would make sense to rest more than usual as my body and the AV's are hard at work?

So gradually, my crashes will be less severe and shorter in duration? Any idea what people's timelines have been on that? (i'm looking for a one-day-to-normal-health type timeline lol)
 
SDSue

SDSue

Southeast
Messages
1,066
Two months into Famvir and nothing particularly good to report. Two weeks ago I had a severe GI "thing" for a couple of days, and it's knocked me down. I'm back to napping every day as I am simply exhausted and my symptoms are flaring. I'm walking on eggshells!

During that same time, I was put on propranolol, which I loved, but I developed severe leg weakness. It's hard to know the cause - the proproanolol or a severe crash secondary to the GI "thing" (virus???) I'm was switched to atenolol and my legs are slowly recovering, but my POTS symptoms aren't under very good control.

I meet with my ME doc in two weeks, and I'm wondering:

* can add Celebrex to the mix, as per Pridgen's protocol?
* can I add another antiviral or switch antivirals? (I have HH6 and EBV)
and most of all:
* am I being too impatient? Is it too soon to change this ship's direction?

I can't decide whether this process is 1 step forward and 2 back, or 2 steps forward and 1 back. More likely it's a zig-zagged unpredictable wandering thru the desert with an occasional oasis for respite!:bang-head:
 
SDSue

SDSue

Southeast
Messages
1,066
I've been on Famvir for about 3-1/2 months. My latest blood work shows:

Elevated:
ALT 64 (normal 6-29)
AST 37 (normal 10-35)

What have been other's experiences with liver tests while on antivirals? How high is "too high" for your doctor? Will switching AV's remedy this situation if it is deemed unacceptable?

Improvements:
GFR 89 - up from 35-55 for many years. (normal >60) HUGE improvement :thumbsup:…. or a lab error :bang-head: ???
EBV early antigen D AB (IGG) 1.58 - down from 1.91 (normal <0.90)
HH6 1:20 - down from 1:40 (normal 10)

Thanks!
 
L

Lynn

Senior Member
Messages
366
I tried the famvir and celebrex for just two weeks and started having sharp pains in my abdomen near the spleen area.

I had liver function tests and they came out at the very top end of the normal range. I decided to discontinue the treatment even though my doctor said that it probably was just a herxheimer reaction. Since I have much more fatigue than pain, I didn't think the upside of the treatment for ME/CFS would be enough to go through having liver/spleen problems.

@SDSue, Have you noticed any improvement in your fatigue symptoms?

Lynn.
 
SDSue

SDSue

Southeast
Messages
1,066
Lynn said:
I tried the famvir and celebrex for just two weeks and started having sharp pains in my abdomen near the spleen area.

I had liver function tests and they came out at the very top end of the normal range. I decided to discontinue the treatment even though my doctor said that it probably was just a herxheimer reaction. Since I have much more fatigue than pain, I didn't think the upside of the treatment for ME/CFS would be enough to go through having liver/spleen problems.

@SDSue, Have you noticed any improvement in your fatigue symptoms?

Lynn.
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Thanks, Lynn. I really appreciate your input. And unfortunately, I have had no relief in my fatigue. I haven't given up hope yet, as some report it takes up to 6 months to feel any change.
 
SDSue

SDSue

Southeast
Messages
1,066
Update:

Had to cease Famvir about 3 weeks ago due to elevated liver enzymes. In the mix of crashing from that, I inadvertently messed up some of my other meds and have been in an extended down. I didn't think the Famvir was really doing much, but now that I'm off it I can see that I had experienced some small improvements.

Today, I got my labs back and my enzymes are finally trending downward. Thus, I am cleared to restart Famvir at a low dose (250 mg twice daily) with a goal of slowly increasing to 1 gm per day. Hope still springs eternal.
 
Ruthie24

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
Sorry to hear you are having such a tough time with the Famvir. Especially a drag that your liver enzymes went up.

I have been on Famvir for 2 years now at a much higher dose than you are taking. My liver enzymes have been normal with all the monthly checks. I started Valcyte (in addition to Famvir) in Dec and have noticed a significant improvement with that.

On the Famvir, my daughter noticed my improvement before I did and that was after about 3 months. The brain fog seemed better around that time. Also I noticed after being on it for a long time that my migraines had ceased. I stopped it for about 5 weeks last summer and within days had my daily migraines back and a host of other symptoms reappear. Until I stopped it, I wasn't totally convinced that it was helping but when I went off it, it was really apparent how much it was helping.

I had significant nausea when starting the Famvir but it eventually went away. I had almost no symptoms when starting the Valcyte but I suspect that was because I'd already been on the Famvir for so long.

Hopefully you can get back on it and it makes a difference. Did you ever get to ask about starting the Celebrex with it?
 
SDSue

SDSue

Southeast
Messages
1,066
@Ruthie24 I'm glad to hear that you have had success with Famvir and Valcyte. It seems that most people need the extra Valcyte thrown in to the mix in order to get their best result.

Isn't it interesting to stop a med and realize that it was actually helping? These things work so slowly that it's really hard to tell otherwise. Now that you mention it, my migraines got worse after stopping Famvir. I'm back on it now, at a very low dose (250 mg twice daily) and will hopefully raise to 500 twice daily in a few weeks.

I feel like I'm in an airplane, circling the airport waiting for clearance, and all the tower control operators have gone home. That is, until I can get clearance on my liver, I can't add anything (like Celebrex) to the mix and have cut out all pain relief. I just have to keep circling and waiting, waiting and circling.

If you saw my Mirtazapine thread, I learned that it was the drug really helping my POTS. So part of my crash that I thought was due to stopping Famvir was actually due to stopping mirtazapine. Unfortunatley, I can't resume the mirtazapine until we find a dose of Famvir that is acceptable to my liver. Again with the waiting lol.

Thanks so much for your nice thoughts! It is wonderful to have a place where people truly understand this battle! How well are you functioning now that you've been on AV's for a while?
 
Ruthie24

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
Good analogy...that constant circling and waiting, forever, when you can see your destination in sight. I've noticed before that you have such a great way with words...and I love your sense of humor.

SO sorry to hear about your troubles. I can certainly relate to that level of frustration.

I'm almost afraid to say how much better I am for fear that this is just a temporary remission or that I'll jinx myself and the universe will feel the need to show me how wrong I am, BUT....

After starting Famvir (March 2013) and being on it for several months (at a high dose), I noticed improvement mainly in my cognition, brain fog and migraines. Had some improvement in physical function but that was variable. I definitely had times when I was significantly better but then had a major crash (July 2013) after I had a load of activity around my son's wedding. That crash lasted over a year. But, without the Famvir, I doubt I could have gotten out of bed to do any of the stuff I was able to do for his wedding.

Last July (2014), I restarted the Famvir, changed from Naprosyn to Celebrex and started taking Texas Super Foods. ( I knew my diet was horrible because I didn't have the energy to shop or cook so figured some basic supplementation might help.) I also added in a low dose of Ritalin in Sept. That felt like it helped with my brain fog enough so I could sort out my 23&Me results and research more of the mitochondrial/MTHFR connection. (Ever since I became ill in 2009 I have felt like there was a mitochondrial issue at the base of a lot of my symptoms.)

I started playing with various supplements last fall as I was doing a little better and continued to improve. I stopped the supplements in order to wean off my topomax for my migraines and definitely got worse- not with migraines but other symptoms. Restarted supplements and resumed improvement. Of course, there were still good days and bad days but the overall trend was upward. In the meantime I was also able to decrease my nadolol (for my POTS) to half the dose I was taking and decrease some of my MCAS meds.

Started Valcyte and cholcicine in Dec. and had another major crash in Jan after painting my son's bathroom. Came out of that quicker than usual and then caught a cold which set me back but not as bad as usual.

For the past 4-6 weeks, I have been slowly increasing my exercise. Started with really short, slow walks. Have now added in a short bike ride once a week (where I live is all hills so not much flat area to ride on), and am doing some yoga daily (just for this past week). I used to teach yoga and have missed it tremendously so just being able to do 20-30 minutes without ending up back in bed for a week has been amazing!!

I still have some not so good days, but even these are so much better than where I was. At least I can now cook dinner about 4 nights a week and get to the grocery store once or twice a week. I am even dreaming of getting back to work at some point. I have a daughter graduating in May and another son getting married in June so if I can get thru that without crashing, I think it will be super good news.

Interesting that the Mirtazapine was helping your POTS, although I'm not surprised. I have been on Wellbutrin for years and when my POTS doc had me stop it, my POTS went crazy. He will not suggest that one again. :)

Really hope things calm down for you soon and you can try some of these things again. Also keeping my fingers crossed that I don't shoot myself in the foot by pushing to do things too quickly. But, it's so hard when you have a little energy again not to want to run do all the things you've been wanting to do for the past 5 years. :bang-head:
 
SDSue

SDSue

Southeast
Messages
1,066
Ruthie24 said:
Ok, that does it. NEVER AGAIN am I saying how well I'm doing because every friggin time.......Big time crash/relapse again. I am SO DONE WITH THIS!!!:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
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I'm so sorry to hear you crashed. The unpredictability is what makes this all so difficult.

I have a daughter's wedding in July, so I understand the pressure to be functional for a big event. At this point, even with my POTS a little better, I will be lucky to make the wedding and reception. How about we be DONE together! :bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
 
SDSue

SDSue

Southeast
Messages
1,066
Famvir update and recap: (for my own use, and anyone else who’s traveling the same path)

In November of 2014, I began Famvir at 250 mg once daily. Over at the course of one month, I built to 500 mg three times daily. Side effects, while ugly for the first few days, quickly subsided and I was able to tolerate the increased dosage easily.

After 4 months, my liver enzymes became elevated and I ceased the Famvir. It took one month for them to return to baseline and I restarted Famvir mid April 2015 with 250 mg at bedtime with the plan to build to 250 thrice daily.

This time around, it’s been difficult to build the dosage. With 250 mg at bedtime, I do “OK". But as soon as I try to add another dose, I get vertigo, nausea, headaches, and feel awful. Anyone else experience this?

As with all things ME, slow and steady. I should have made my new avitar a turtle lol.
 
E

Ema

Senior Member
Messages
4,729
Location
Midwest USA
If antivirals are GABA anatagonists (need cites for this though), mightn't taking GABA as a supplement help reduce these symptoms?

@Sushi, have you ever thought about trying this?
 
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