Trying valcyte again, so far so good

[SOC]

Good to have these threads to look back on.

The first 4 months were on 1 tab a day. Then moved to 2 tabs a day for 5 months, then a further 3-4 months on 1 valcyte. When i first moved to 2 tabs a day i had a few days where i backed off to 1 tab but only did this a few times. Prior to all this i had a couple attempts at valcyte but none lasting longer then 2 weeks due to feeling incredibly worse. I think these couple of shorter trials may have helped me to manage the longer trial i have just finished. I dont know if i could have developed a resistant strain from it?? Wouldnt i have gotten worse while i was on valcyte?

Depending on my next lot of tests, if my lymphocytes are high and my neutrophils arent low i will consider the valcyte again but think i need to get the sinus stuff sorted somehow, which i think is due to neutropenia from valcyte??

Valcyte stops the viruses from replicating, but doesn't outright kill the virus. It's still up to your immune system to do that. My concern is that if you took too low a dose, you might stop the weaker elements of the virus from replicating, but allow the stronger ones to continue. Once you go off the Valcyte, the stronger ones continue replicating and they're not as susceptible to Valcyte, so they're harder to knock down, especially with a low dose. I could be wrong and worrying for no reason, though.

I believe both Dr Montoya and Dr Lerner have put patients back on Valcyte if CMV or HHV-6 became active again, so I'm thinking that's not a problem. I wouldn't be popping on and off it frequently, though. I hear they're already seeing Valtrex-resistant EBV.

Valcyte may just not be the med for you, especially since you have to work. A lot of, but not all, people feel like crap for some part of Valcyte treatment. Also, Valcyte seems to work best if you can get a lot of rest so your immune system has the energy to kill the virus-infected cells -- those CMV and HHV-6 infected cells must be a bugger to get at. Maybe because they're more likely to be in the CNS than EBV-infected cells?

Maybe it would be better to stay on the Famvir and boost the dose if you can...?

Have you tried long-term azithromycin for the sinus infection? Or clarithromycin? I've had short-courses of both that helped, but it keeps coming back. I'll be asking my specialist about the whole recurrent sinus thing next time I see her, because I haven't gotten it under control, either.

 

[heapsreal]

I do feel better today, thank goodness. Pain killers last night stopped my brain exploding.

Now that i can think abit clearer, i have been trying to work out what has changed lately. The last couple of days the post nasal drip eased but the head got worse and different to sinusitis, which is why i was thinking viral reactivation. The last couple of weeks i have increased my dose of pregenolone cream from 50mg to 100mg which initially was no negative reaction but i think it sneaked up on me. My sleep has been abit irradict of late so i think the pregnenolone has been overstimulating me. Yesterday morning i didnt use the preg cream mainly because of the wired feeling, not really thinking it was the pregenolone. Today i skipped the pregenolone and so far so good. Headaches were usually worse in the morning and ease at night so this correlates with the preg levels?? Im going to hold off on the preg for awhile and maybe add it back later but no more then 50mg. Hindsight is a good thing, mm but yes what i went through in the last few days was similar to what happened to me in the past when i started pregnenolone, which increased my cortisol levels to high. It can be hard to workout whats going on when symptoms fluctuate so much and are non specific. I have 3 days of work starting tomorrow so that should give me an indication?? i hope??

Its still a guess but the only thing i can put it down too??

 

[SOC]

heapsreal ~ Glad you're feeling better. Let's hope it was the pregenolone. It's so hard to tell with all the stuff we're taking and the way the illness itself fluctuates. Half the time I'm only guessing if some supplement or other is helping or not.

Good luck with your 3 days of work!

 

[heapsreal]

Well definately crashed since off valcyte. Feeling like shit. Somehow worked 10hrs today, automatic pilot mode. Driving home was hard as i felt like my head was going to explode, so my 30min drive home felt like an hour. I got home and had a valium sandwich with a side serve of tramadol and lied down for awhile.

I was really contemplating going back on valcyte but also wanted to wait until i see my doc again which is in a week and see my blood work first. I couldnt do it any longer and have started valcyte again. My sleep has gone whacky again, getting nerve pains down my legs that keep me awake and my head just feels like crap. Glands are sore and just general lethargy and muscle pains. So thats where im at. I feel frustrated by this all after feeling quite good

cheers!!!
just realised its taken me 30min to type this

 

[maddietod]

I'm sorry, Heaps. It just sucks.

 

[Ruthie24]

Super major bummer Heaps!! So sorry to hear that you're back to being so wiped out after being so good for such a span of time. It's so wonderful having those better times, but they sure make the crashes/relapses all the more painful and miserable to endure as you realize just how much this whole disease destroys your life on a whim.

So Sorry! Hope the valcyte gives you some relief soon. Please keep us posted.

Hugs!

 

[Sushi]

Well definately crashed since off valcyte. Feeling like shit. Somehow worked 10hrs today, automatic pilot mode. Driving home was hard as i felt like my head was going to explode, so my 30min drive home felt like an hour. I got home and had a valium sandwich with a side serve of tramadol and lied down for awhile.

I was really contemplating going back on valcyte but also wanted to wait until i see my doc again which is in a week and see my blood work first. I couldnt do it any longer and have started valcyte again. My sleep has gone whacky again, getting nerve pains down my legs that keep me awake and my head just feels like crap. Glands are sore and just general lethargy and muscle pains. So thats where im at. I feel frustrated by this all after feeling quite good

cheers!!!
just realised its taken me 30min to type this

As others said, so sorry! What would we do without valium sandwiches at times like this.

Hope you have enough valcyte on hand. Keep us posted.

Sushi

 

[heapsreal]

I have said this to a couple of people now in chats and its doesnt sound right but after only 2 days on the valcyte i feel abit better, maybe got the viruses right in the middle of reactivating??? The last 2 night i have increased my sleep meds some to get some good sleep, maybe this has helped too. Im just waiting on some immunovir to arrive and see my doc in a week to see my blood work, i hope my neutrophils are back to normal or else will have to rethink the valcyte??

I have enough valcyte for a few months.

thanks sushi.

 

[Sushi]

I have said this to a couple of people now in chats and its doesnt sound right but after only 2 days on the valcyte i feel abit better, maybe got the viruses right in the middle of reactivating??? The last 2 night i have increased my sleep meds some to get some good sleep, maybe this has helped too. Im just waiting on some immunovir to arrive and see my doc in a week to see my blood work, i hope my neutrophils are back to normal or else will have to rethink the valcyte??

I have enough valcyte for a few months.

thanks sushi.

I bet you just scared the buggers to death as soon as you pulled out your valcyte.

Sushi

 

[Sparrowhawk]

Just read this entire thread start to finish. Thanks heapsreal for such a thorough chronicle of your approaches and experience. Extremely helpful for someone like me who is really just beginning to get a grip on what I have, and what the options might be. So thank you.

Having been on doxy for more than two years myself, I'm ambivalent about long term abx because I'm not sure if that's part of what trashed my GI tract. I realize you're between the old rock and hard place with sinusitis. The question was asked earlier in the thread as to whether you've trialed no=dairy (of any sort) to see if that helps? I've gone from sinusitis every change of seasons (esp when the mold count is up) to none (knocking on wood) I think in part by ditching dairy.

Very best to you as you stand up to this next round. Are you still cycling thru the immunovir and Cycloferon?
"Still doing the immunovir 2 months on and 1 on cycloferon"

 

[heapsreal]

Just read this entire thread start to finish. Thanks heapsreal for such a thorough chronicle of your approaches and experience. Extremely helpful for someone like me who is really just beginning to get a grip on what I have, and what the options might be. So thank you.

Having been on doxy for more than two years myself, I'm ambivalent about long term abx because I'm not sure if that's part of what trashed my GI tract. I realize you're between the old rock and hard place with sinusitis. The question was asked earlier in the thread as to whether you've trialed no=dairy (of any sort) to see if that helps? I've gone from sinusitis every change of seasons (esp when the mold count is up) to none (knocking on wood) I think in part by ditching dairy.

Very best to you as you stand up to this next round. Are you still cycling thru the immunovir and Cycloferon?
"Still doing the immunovir 2 months on and 1 on cycloferon"

I dont eat alot of dairy anyway, maybe some cheese, mostly eat low carb food.

Immunovir and cycloferon, i had issues getting cycloferon and immunovir i stopped as i couldnt sense much from it although had a small increase in nk numbers. I think now that i didnt feel much from immunovir was because i was functioning well from the valcyte. I stopped the immunovir due to cost, trying to save some money. I did switch to colostrum and beta glucan to help immune system but i dont think it was enough. SO i have gone back on valcyte and ordered more immunovir which im going to stay on and cycle with AHCC. I see my doc in a few days and will discuss things further with him. Hind sight i would have stayed on the immunovir as its has alot more science behind it. Its a pity i dont have access to the nk function testing anymore as then i could see whats helping me and what isnt??

The BEG(antibiotic) nasal spray seems to be working well as my post nasal drip has reduced alot. Im using minocycline and augmentin as well, just about to run out of augmentin, so will see how the sinuses go with out it. I really dont know if the sinusitis is causing neutropenia or the valcyte is doing this and making it hard to then fight the sinusitis. either way i need to strengthen my immune system some how.

Im still getting constant headaches and feel drained/lethargic but this is from the latest crash. Im currently resting hard to try and get out of it. Difficult to do while im still working, im avergaing 30hrs a week but my rosters is kind of weird as i can have to work 5 x 10hrs shifts 1 week and the next work only 2 shifts etc, so the long weeks kill me and sick leave is being used once again. So i suppose at the moment im in a post viral state and just have to rest and give it time.

cheers!!

 

[SOC]

heapsreal ~
Have you tried HR monitoring and HR-based pacing? I know you have to work, but you might be able to modify how you work to cause less PEM. You'd probably have to get AT testing, but your doc might be able to prescribe it. You're an old gym-rat, right? It's something you'd know how to work with.

 

[heapsreal]

heapsreal ~
Have you tried HR monitoring and HR-based pacing? I know you have to work, but you might be able to modify how you work to cause less PEM. You'd probably have to get AT testing, but your doc might be able to prescribe it. You're an old gym-rat, right? It's something you'd know how to work with.

Soc it would be impossible with my job. My job can have me go from zero to hundred and back again. WOrking as a paramedic makes any type of pacing hard. Aggresive resting i think is about it. When im not at work i do very little of late. If i can get back to where i was just before stopping valcyte and then maintain that off valcyte would be awesome.

My work roster is about to change in the next few months where i might be able to space my shifts throughout the week with days off between work days, but not sure when this is going to happen. I wish i could just take 12 months off work to rest up. I dont know where i stand with disability payments etc and im going to talk this over with my doc as he does alot of this type of stuff in my part of the world. If it was a recognised illness i could get time off easy enough and covered by my superannuation income protection but i just dont know enough about it.

I dont want to sound sexist, but what do other married men with families do when they are the bread winners with house payments and other bills coming in all the time. I feel jammed between a rock and a hard place, Whipping that dam horse to death sometimes. My wife works but she is lucky if its the same as being on a pension anyway and wouldnt cover the cost of our living expenses.This is why i aggressively search out treatments etc

At the moment i just dont know, its one day at a time and hope like hell the valcyte kicks in soon and that my doc tells me he has 'the cure' on monday when i see him.

cheers!!!

 

[Sparrowhawk]

heapsreal I hear you brother, if I stop work we have to sell the house, we lose health insurance and we have two kids, so I keep working. I don't know if I am making myself worse doing that, e.g. what happens if collapse again, and further jeopardizing future income that I might make if I just take six to 12 months now to try to recover. Financially i dont know what toll that would take though, it would have its own stress constellations due to loss of income. Disability lumps CFS in the same limited coverage category as alcoholism if you can believe that. So there is no magic out that direction.

I take cold comfort that so many stories here seem to show you can do all sorts of things "right" and still relapse. So maybe it's less stressful overall to keep working, and try to find things that can help in the margins at the same time.

Trying to stay positive !

 

[SOC]

@heapsreal~
Yeah man, I know your work doesn't lend itself to pacing. Guess I was hoping that you could figure out how to do some things a bit less energetically if you had the data. No way to avoid going high speed in an emergency, but it's surprising how much lying down or putting feet up between times can help. It's far from perfect, but you're in a place where you need to take every little help you can find.

Good luck with your doc. Maybe he can come up with some answers... or at least a feasible path for you.

 

[heapsreal]

heapsreal I hear you brother, if I stop work we have to sell the house, we lose health insurance and we have two kids, so I keep working. I don't know if I am making myself worse doing that, e.g. what happens if collapse again, and further jeopardizing future income that I might make if I just take six to 12 months now to try to recover. Financially i dont know what toll that would take though, it would have its own stress constellations due to loss of income. Disability lumps CFS in the same limited coverage category as alcoholism if you can believe that. So there is no magic out that direction.

I take cold comfort that so many stories here seem to show you can do all sorts of things "right" and still relapse. So maybe it's less stressful overall to keep working, and try to find things that can help in the margins at the same time.

Trying to stay positive !

Yes alot of stress in selling houses , moving etc etc. I think once on disability, it would make it hard to then get a job later on if i improved. I have my fingers crossed that i have improved before and can do it again, just need to work out a way to maitain the improvement. Your right in that there is a big stress in not working and going through the disability process. Its doable if i was on my own but i have 3 others relying on me. If i were to go on disability now then i would have given up as the only treatments i could afford would be very basic symptomatic treatments, anythingelse would be impossible. Thanks Sparra.

Thanks SOC, your a champ.

 

[OnlyInDreams]

I was really contemplating going back on valcyte but also wanted to wait until i see my doc again which is in a week and see my blood work first. I couldnt do it any longer and have started valcyte again. My sleep has gone whacky again, getting nerve pains down my legs that keep me awake and my head just feels like crap. Glands are sore and just general lethargy and muscle pains. So thats where im at. I feel frustrated by this all after feeling quite good

Heaps, make sure that you take at least 900mg Valcyte daily. Do everything you can to maintain that dose. It will make all the difference in the world. Dr. Lerner specifically mentioned to me in an e-mail that 450mg daily simply isn't sufficient. With 450mg, you will win the battle but you will lose the war. With 900mg, potentially you could win both in the long run.

As of today, I have been on a minimum of 900mg Valcyte daily for 15 months & 2 weeks (was taking 1350mg daily for a while). I feel fantastic. I'm not perfect or 100% "cured", but I definitely have my life back. I can do everything that I want to do physically and mentally. However, I am a little worried about what'll happen once I stop Valcyte in November (which will mark 18 months of Valcyte). If I crash, I will be devestated beyond belief just as you are right now. But I can't take valcyte forever. So I'll just have to see what happens.

OID

 

[heapsreal]

Heaps, make sure that you take at least 900mg Valcyte daily. Do everything you can to maintain that dose. It will make all the difference in the world. Dr. Lerner specifically mentioned to me in an e-mail that 450mg daily simply isn't sufficient. With 450mg, you will win the battle but you will lose the war. With 900mg, potentially you could win both in the long run.

As of today, I have been on a minimum of 900mg Valcyte daily for 15 months & 2 weeks (was taking 1350mg daily for a while). I feel fantastic. I'm not perfect or 100% "cured", but I definitely have my life back. I can do everything that I want to do physically and mentally. However, I am a little worried about what'll happen once I stop Valcyte in November (which will mark 18 months of Valcyte). If I crash, I will be devestated beyond belief just as you are right now. But I can't take valcyte forever. So I'll just have to see what happens.

OID

I have restarted on 450mg and i see my doc tomorrow and get test results back and im interested to see if my neutrophils bounce back after about 8 weeks off valcyte when i had the test done. So i suppose it depends on that as well as getting enough valcyte to run at 900mg a day for an extended period. So im up against the wall for a few things.

cheers!!

 

[Sparrowhawk]

Hey heapsreal and SOC, when you were feeling better on Valcyte, was it just your energy coming back or did other issues clear up too? I mean things like sleep issues, digestion etc.

I am curious because I know of one N=1 example of Valcyte use where a gal had her insanely high cholesterol normalize while also gaining back 50% of her pre collapse functioning. Given that is one of mY issues, along with nerve /muscle twitching, GI issues and sleep, I'm wondering if those all might be affected by an antiviral or just energy, which would still be great.

Thanks.

 

[heapsreal]

Hey heapsreal and SOC, when you were feeling better on Valcyte, was it just your energy coming back or did other issues clear up too? I mean things like sleep issues, digestion etc.

I am curious because I know of one N=1 example of Valcyte use where a gal had her insanely high cholesterol normalize while also gaining back 50% of her pre collapse functioning. Given that is one of mY issues, along with nerve /muscle twitching, GI issues and sleep, I'm wondering if those all might be affected by an antiviral or just energy, which would still be great.

Thanks.

funny u mention cholesterol as my recent tests off valcyte show my cholesterol has gone up. Talking this over with a cfs friend the other day and we see this high cholesterol in us as a marker of oxidative stress as cholesterol and uric acid are used by the body as antioxidants. As for sleep it did start to improve although still on meds currently its gone whacky again. So yes generally most things improve. I think its easy for me to see after my post valcyte relapse.

cheers