I have some questions for anyone who has ever taken Valcyte...

[halcyon]

I have horrible fever blisters in my mouth.

What part of the mouth do these show up in?

 

[SOC]

I'm hoping this helps me like you, Gg. I started this whole thing with Epstein-Barr virus, which is always very high. I can't remember which virus Valcyte works with or if it works with them all. Every month at the time of my cycle, I have horrible fever blisters in my mouth. I can't remember if Valcyte helps that, but I will look it up. Tomorrow I see my CFS doctor and I will tell him that I'm joining in. He's very tolerant and open-minded and will allow me to try anything and I have these two bottles of Valcyte here. If I continue at such a small dose it will last for two and a half years.

My blood pressure is always 90/54. Incredibly low and sometimes it's 80/54. I've had so much fog lately and fatigue and I was telling Z tonight that I just can't go on like this. I've been spending half my day in bed. Of course, it's been way worse since the surgery.

Fingers crossed!! I'm so glad you're feeling better, Ginger- you deserve it.

Valcyte is not the anti-herpetic for EBV. It is better for beta-herpes viruses (CMV, HHV6). Valtrex and Famvir are better for the alpha- (HSV, VZV) and gamma-herpes viruses (EBV). If EBV and fever blisters are your problem, I'm surprised your doc isn't trying the AVs believed to be more effective for those and which are safer meds than Valcyte.

OTOH, if the main effect of Valcyte in ME/CFS is it's immune modulating properties, then it probably doesn't matter which herpesviruses are giving you trouble.

Good luck with your Valcyte trial. It did wonders for my family, so hopefully it will do the same for you.

From what you said above, it sounds like your dysautonomia is not at all under control. You probably won't feel a lot better from Valcyte if your dysautonomia is still that bad. You might want to deal with that before you use up your limited supply of Valcyte so that you can get the best effect from it.

 

[Misfit Toy]

@SOC -I have tried Valtrex and acyclovir and they have made me extremely sick. I become full of pain all throughout my body. When I was on acyclovir, my hand went into a curled up hand. Pins and needles. I've never been diagnosed with dysautonomia so I'm sure I have it to a degree, but I don't have POTS. It seems from what I've been reading on here that many people who go on Valcyte actually have relief from dysautonomia. Will find out.

@halcyon-my fever blisters reside where my back molars are.

 

[Gingergrrl]

@Misfit Toy Thank you for sharing that and absolute best wishes to you on this journey. Just make sure you do the safety labs (as per your doctor of course!) and they are really important even at this small dose. It may seem like they are unnecessary but since you are very sensitive to meds like me, our bodies can react (good or bad) to very small doses of things.

I guess this is as good a time as any to update my Valcyte thread... I continue on LDV (low dose Valcyte ) and after a successful week at 1/32 dose, I had another successful week at the 1/16 dose. Tomorrow is my last day at this dose and on Weds, I will be increasing to 1/8 pill. I am not sure how high my body will tolerate this but I will continue increasing every 7-8 days as long as my safety labs remain normal and I do not have any return of vertigo or other bad side effects.

At the moment I have both good and bad to report but I honestly do not feel that any of the bad is from the Valcyte and will explain why... and will start with the good stuff first (just had to throw in the doggie icon to see if everyone was still awake!)

Here is the GOOD:

1) Throughout my two plus weeks of Valcyte I have had an increase in physical energy and mental clarity. My noise intolerance has literally disappeared. I can watch TV, listen to music, etc, while doing other tasks which is a miracle.

2) My BP remains low in the morning (usually 80's/50s), but with the exception of two days, it has increased to over 100/65 every day within two hours of taking Valcyte. My highest reading yet was 105/68, and another at 104/74, and I did not reach these levels even when I was taking Midodrine and meds to try to purposely raise my BP!

3) I continue to feel thirsty every single day and am able to enjoy drinking water and other fluids again. I had completely lost the sensation of thirst and it is as if Valcyte has corrected this in my brain. I am now able to drink 8-10 glasses per day which I know is helping me as well. As much as I tried to drink prior to Valcyte, I could not force myself to do it and it was torture to drink even 3-4 glasses per day.

4) I have had bruises on my legs for three straight years since having mono (2012-2015) and since starting Valcyte, the bruises are gone and have not returned. I was embarrassed to wear shorts b/c the bruises were so ugly and now they are gone!

And now the BAD:

1) One day this week I forgot to take my evening dose of Atenolol and had three episodes of severe tachycardia which took me several days to recover from. This of course has nothing to do with Valcyte but it messed up my progress which had been all positive. I will definitely not be accidentally missing Atenolol again.

2) I have been having a significant increase in muscle pain in my neck, shoulders, arms, back, calves, etc, and pain is not normally a big issue for me (except for monthly cramps which are excruciating .) But to get back on topic, I have been wondering why my pain is worse and I think it is b/c I have been overdoing it and not resting as much as I should be on Valcyte.

Because my energy is better AND I have been having more stamina and less shortness of breath, I have been able to do more within the home. For the last few days I made my own breakfast including lifting a plate above my head into the microwave twice (which had been impossible for me in the past.) Last night I was able to carry a small space heater from the bathroom to the bedroom without getting short of breath or chest pain and was stunned. It was like a moment of triumph even though I know it must sound very small in the scheme of things.

But I don't think my muscles are used to this extra activity and that must be why I am in so much pain. I also have not been resting as much as I should. It is so hard for me to rest when I feel better. I am still house-bound but I am able to do more within the home like folding all the laundry, etc. I feel so good emotionally when I can help that it is hard to just lie down and rest. How do you do that when you are having some improvements?!!!

Overall, I am nowhere near the end-goal and still use the wheelchair when we go out b/c I can only walk about 20-30 feet maximum. But I dream of the day of being able to go out without the wheelchair and believe if anything will get me there, it is the Valcyte.

Thanks to anyone who is still reading!

 

[Gingergrrl]

OTOH, if the main effect of Valcyte in ME/CFS is it's immune modulating properties, then it probably doesn't matter which herpesviruses are giving you trouble.

IMO, the Valcyte is working so quickly for me b/c it is working as an immune modulator and most likely as an anti-inflammatory or anti microglial in my brain. It seems far too fast to be having an anti-viral effect although I cannot explain (in my case) why all of my bruises are now gone assuming the bruises were from the EBV. I took Famvir for 7 months but had no improvements like I have had in the two weeks of Valcyte.

From what you said above, it sounds like your dysautonomia is not at all under control. You probably won't feel a lot better from Valcyte if your dysautonomia is still that bad. You might want to deal with that before you use up your limited supply of Valcyte so that you can get the best effect from it.

I know you were addressing that to Misfit Toy but in regard to myself, my dysautonomia is still very bad (and has always been my very worst symptom) but Valcyte is the only med that I have tried that is raising my BP. I cannot explain why that is the case, only that it is happening. It is possible that my BP is raising b/c I am drinking more fluids (actually I am certain this is a big factor) but prior to Valcyte I felt no thirst and was not able to drink the fluids no matter how much you and Sushi and everyone lectured me LOL so something has changed. And even on the days that I forced myself to drink eight cups prior to Valcyte, my BP never went up to 105/68 like it did today!

 

[Misfit Toy]

My doc is fine with me being on Valcyte. Today I took 1/16 of a pill. I drove to my doc's which was an hour away. My BP was 100/60, which is higher for me but it's been higher since I had the surgery. Not sure why. Anyway, will have kidney and liver test in a month.

Also, @zzz , I am going on intramuscular injections of magnesium with Taurine. I am hoping it doesn't hurt. He wants me on 1 cc of each that will be mixed together. In the thigh. 3 times a week. Tagging Z, because it was a suggestion of his due to by mag being so insanely low and taurine low.

Up next, we are checking mineral levels through Genova Nutreval and saliva adrenal testing>

I am going on Kavinace, which is supposed to help with Gaba and Turmeric for pain. All things one at a time.

He does not want me to have a sleep study at this time due to pain and wrist. Too much going on.

Z, he said the magnesium must have been getting into my body via nebulizer! IT was working.

No problems yet with Valcyte...here's hoping!

 

[Gingergrrl]

True story... when I went to the lab this afternoon to do my safety labs for Valcyte there were three girls sitting together (I say "girls" but they were probably in their early 20's) and they were giggling about how they were there to do their pre-op blood work for their boob jobs. Here I am in my wheelchair doing safety labs for Valcyte. I didn't know whether to laugh or cry... ... but hoping this story will make someone smile. You can't make these things up.

 

[Gingergrrl]

I wanted to report that I increased to the 1/8 pill dose of Valcyte this morning and so far so good and no vertigo!

I had a bit of a relapse yesterday after giving blood for some tests. I felt very weak with significant shortness of breath even though I had drank four cups of Vitalyte in the morning prior to the test. My body does not seem to do well with blood tests any more. The most frustrating part was that I gave blood to repeat the coxsackie & echovirus panel (it was a repeat test to see if the one abnormally high titer is going up or down) and the lab messed it up.

It is still unclear if they were able to use the blood and my doctor's office is trying to correct the mix-up. I am hoping it is not too late and that I did not give all that blood for nothing. It is so hard for me to give blood and then have the lab mess it up was very frustrating!

 

[Gingergrrl]

Tagging Z, because it was a suggestion of his due to by mag being so insanely low and taurine low.

@Misfit Toy what test did your doctor use to determine that your magnesium and taurine levels were low? I am also doing the magnesium by nebulizer (plus pill form) and also taking taurine (in pill form) every day. My intracellular magnesium level remains low and I have never been tested for Taurine level. Just curious what tests you had for these and what are considered to be the most accurate?

 

[Misfit Toy]

@Gingergrrl -Genova Diagnostics 'Optimal Nutritional Evaluation test.' I believe it measures all minerals and it's covered by medicare. A plus! There is an intracellular one....bloodwork, but it's $80.00.

 

[Gingergrrl]

@Gingergrrl -Genova Diagnostics 'Optimal Nutritional Evaluation test.' I believe it measures all minerals and it's covered by medicare. A plus! There is an intracellular one....bloodwork, but it's $80.00.

@Misfit Toy Is the "Genova Diagnostics Optimal Nutritional Evaluation test" a blood test or a urine test or something else? I was not sure when you said that the intracellular one is bloodwork if you meant the first one was something different?

I still need to do some other blood tests and am finding now that every time I give blood it takes me a few days to recover (even though I drink a lot of fluids and use the wheelchair.) I used to be able to do blood tests with no problem but now they make me very weak and short of breath .

 

[Misfit Toy]

Gg-it's a urine test and easy. You have to fast after midnight though. Goes in mail, not a lot of work. Easily done.

 

[Oredogg]

I wanted to report that I increased to the 1/8 pill dose of Valcyte this morning and so far so good and no vertigo!

I had a bit of a relapse yesterday after giving blood for some tests. I felt very weak with significant shortness of breath even though I had drank four cups of Vitalyte in the morning prior to the test. My body does not seem to do well with blood tests any more. The most frustrating part was that I gave blood to repeat the coxsackie & echovirus panel (it was a repeat test to see if the one abnormally high titer is going up or down) and the lab messed it up.

It is still unclear if they were able to use the blood and my doctor's office is trying to correct the mix-up. I am hoping it is not too late and that I did not give all that blood for nothing. It is so hard for me to give blood and then have the lab mess it up was very frustrating!

Hi there! Congratulations on your improvement. My wife hasn't tried valcyte yet, but she also is extremely sensitive to standard med dosages, so you definitely aren't alone in this. Any advice on a decent pill splitter to make 1/32 of a pill? I have a hard enough time cutting my wife's equilibrant into 1/4 pill pieces. Thanks!

 

[Gingergrrl]

Hi there! Congratulations on your improvement. My wife hasn't tried valcyte yet, but she also is extremely sensitive to standard med dosages, so you definitely aren't alone in this. Any advice on a decent pill splitter to make 1/32 of a pill? I have a hard enough time cutting my wife's equilibrant into 1/4 pill pieces. Thanks!

@Oredogg I actually just have a basic pill cutter from CVS pharmacy but bought a new one that I use just for Valcyte (and have a separate one for everything else so they don't get mixed together.) Valcyte (the brand version) is a large pill and very sturdy so it was easy to cut into 1/32. The 1/32 size was equal to the size of a 1/4 of my Atenolol. I am now on 1/8 Valcyte and planning to increase to 1/4 Valcyte by the end of next week. Best wishes to your wife and I know I sound like a broken record, but make sure her doctor does the safety labs even at a low dose.

 

[SOC]

@Oredogg Valcyte (the brand version) is a large pill and very sturdy so it was easy to cut into 1/32. The 1/32 size was equal to the size of a 1/4 of my Atenolol.

I suppose everything is relative. I wouldn't have said a Valcyte pill is large, but it may be that I'm comparing it to other pills I take, like Valtrex, which are much larger. I have trouble cutting most pills in half, much less into 32nds. I'm not sure I could even pick up a 1/32 piece of a Valcyte pill, lol! You must have delicate little fingers.

Glad to hear you are still doing well with the Valcyte.

 

[Gingergrrl]

@SOC The only pill that I have ever taken that is bigger than the Valcyte is my prescription Potassium which is a monster pill but that one cannot be cut b/c it is time released.

 

[Misfit Toy]

I just need to check in. I have been feeling lousy for two days, yesterday and today. But I can't say that's because of Valcyte. It could be hormones. My days are so erratic and my health is so erratic that sometimes it's hard for me to tell if something is affecting me in a negative way.

I've been going to bed very late for some reason. Like 5 AM. Not sure what's going on or why. And I've had hip pain that is acted up over the last two days and now my hand is killing me where the surgery was. Again, not sure if it's anything I'm taking or doing.

But, for today I'm not going to take the medicine. I'm going to give my body some rest. It snowed today so that could be a reason why I am having pain, I'm not sure.

When I went to my rheumatologist the other day, my blood pressure was higher again. I think this is interesting but again I can't say it's Valcyte.

One of the problems with the whole sleeping issue is I love to watch TV at night and I'll turn on a show on Netflix and watch one episode after another and even though I'm tired, I'll keep pushing through. What I need to do is just turn off the TV.

Ugh.

Anyway.....here's hoping things settle down for me because I'm struggling. I need to go out and get some groceries but have zero energy.

 

[Gingergrrl]

Just wanted to post an update and wasn't sure where to put it so I figured my Valcyte thread was as good a place as any!

Long story short, I have had chronic injuries to my neck from car accident in 2006 (in which my car flipped upside down) and to my right arm from Levaquin in 2010 and both can flare up very easily.

About a month ago (approx) I tried a med called Mestinon in an attempt to see if it would raise my BP. I only tried it for one day but it made my muscles feel weaker and when I turned my head that day, I badly twisted my neck. I stopped that med and never took it again.

It has all gone downhill from there (pain wise) and so I saw an osteopath last week who unfortunately made me much worse and the pain in my neck and right arm was excruciating. I tried Norco, Advil, arnica, Turmeric, TENS unit, heat, ice, etc, with little relief.

The inflammation in my right arm was so bad that I was getting two completely different BP readings between arms which scared me. I talked to my doctor and he thinks I probably have a pinched nerve in my neck.

He gave me some suggestions and in addition, my own plan for when I am a little stronger is to see my chiropractor (he is very good and I wish I would have seen him to begin with instead of the osteopath .)

We have a foam roller at home and my husband helped me use it to create traction for my neck and this helped substantially. The BP between my two arms is normal again (although now getting very low BP in general again.)

My doctor 100% did not think that Valcyte had anything to do with causing this episode, and I don't either, so I am continuing with the 1/8 pill low dose (but not increasing it yet) and staying ongoing at this level for now. I still feel many improvements from Valcyte (LDV as I call it) and still hopeful it will help me long term.

It is severely painful to type and I am past due on getting my disability forms prepared for my attorney (they have called me twice and I have not done them yet ) so I am going to take a break from PR until I can get those forms done and my neck & arm pain improve. If they worsen, I might be getting an MRI of my cervical spine. The fun never ends...

So in case I am not around as much and not responding to PM's or emails I wanted everyone to know why. I feel sad taking a break and PR is like my lifeline so hoping I can fix this problem soon. I am stubborn and keep typing but typing is clearly making the pain worse.

Just tagging a few people so they know what is going on and apologize if it takes me a while to respond. Please don't feel obligated to respond here, I just wanted you guys to know why I am not responding!

@Sushi @zzz @halcyon @jeff_w @Sidereal @Revel @SDSue @NK17 @charlie1

Thanks to everyone for being so supportive!