IV Ganciclovir anyone?

[thecatswhiskers]

Hi,

I'm due to start a 6 day daily IV course of Ganciclovir on Monday. I wondered if anyone else has had it and how you've got on?

I've had a major flare up, with painful glands everywhere, extremely exhausted, migraines, night sweats and hot flushes. I've previously (years ago) tested with High EBV, but have not had a viral panel done since this flare (trying to save money and put any funds toward treatment.). The 6 days of IV ganciclovir will be followed by oral Valtrex.

I also have previously tested positive for Lyme, Ehrlichia and probable Bartonella. Not yet treated as I react badly to antibiotics and wanted my system as strong as it could be before I did (had been getting on very well prior to this bad flare.)

Any thoughts/ feedback would be very much appreciated )

 

[heapsreal]

Sounds like a good regime, what dose of valtrex will u be on when u start? Maybe look at adding imunovir or cycloferon to improve nk function and this could help with bacterial infections as well. kepp us posted on this.

cheers!!!

 

[thecatswhiskers]

Hi Heapsreal,

Lovely to hear from you! )

Hope it works out and gets me outta this slump. I'm doing the IV Ganciclovir for a week .... Then the oral Valtrex 1000mg (2x 500mg) twice a day.

Interesting what you say about the Immunovir/ Cycloferon, thanks for the tip. I tried Imunovir before Christmas ..... I seemed ok for 2 weeks (started it when I had a cold); but when the cold finished everything flared up really badly (all my viral/ infection/ immune symptoms so I came off it incase it was exacerbating things. You saying that though has made me think I might dig it out a try it again, along with the antivirals.

Been following your story and glad you're doing well Heaps!

 

[heapsreal]

How have the first few iv treatments of ganciclovir gone?
The cycloferon comes in pills and ampoules for injection. If u can inject yourself, the injections are quite good and initially help alot with that viral type inflammation within a few hours i found and then after a few weeks i changed to the pills. The only scary thing u have to overcome is the cycloferon comes from the ukraine without any english on the product, but its good s--t. A few people have said they got a die off type reaction and others like myself felt good straight away.

Thanks for the well wishes, i hope your feeling better soon. I just noticed your post count, 3 posts, you are like a cat(catswhisckers), lurking around, lol. u have been around for awhile dealing with this, good luck.

cheers!!!

 

[thecatswhiskers]

Well I don't mind being a cat .... As long as I don't have the whiskers. Being a girl, that really would be beyond it!!!! I'm bit of a latecomer to PR, was over at Prohealth more as you know ..... So much to read here; hence my 'lurking' lol! By the time I've read, I'm then too tired to post at the mo

I've not started the IV's yet .... Due to start them this coming Monday, for 6 straight days through to Saturday. Having a few vitamin drips at the same time to boost me a bit too.

That's interesting about the Cycloferon ... I've just got to get over my fear of self medicating and buying meds off the Internet. I must say I'm getting close to it tho! I think I will give the Imunovir a whirl again whilst I'm on the AV's, as they do a harmonious job (one drug helping your immune system, and the other drug knocking back the virus) .... I've got sone of the Imunovir here too, ready to go.

Cheers my dears!!!

 

[thecatswhiskers]

PS. Heapsreal .... Do you know if Ganciclovir works by stopping the virus replicating, in the same way as Valtrex? It doesn't kill/ destroy the virus as such?

 

[heapsreal]

just stops replication but is alot more potent, also works against cmv and hhv6. Famvir is another drug that also has been shown to work against these viruses and is alot cheaper then valcyte as well, something to look into. but try to stay on the av's , valtrex or famvir for a few years as this seems to be the norm with there use in cfs.

cheers!!!

 

[thecatswhiskers]

I know you've talked about Famvir previously and you got on well with it .... I must say that one does interest me. Funny tho, here in England you don't seem to hear much about Famvir.

If I stay on the Valtrex I'm gonna have to find a cheaper source online as I just can't afford the 79 a week for it! Dr was a bit worried about prescribing me her preferred Ganciclovir IV due to cost, so also quoted me for Acyclovir IV .... Funnily the Acyclovir was dearer per drip .... Was then a no brainer which one to choose!!!

If I start doing really well on the Ganciclovir IV, I might then extend it for a further week. Tough call though as the price for a week of that would give me 8 weeks on oral Valtrex. Still think I'd go for the ganciclovir for the wider spectrum of viral hits! My biggest challenge will be going in the clinic everyday for treatment. My post exertional fatigue is so bad at the mo, can't see how my energy will stretch. Everything crossed though!

Thanks for your info Heaps, it really helps a lot )

 

[heapsreal]

Just a suggestion, after your week of iv ganciclovir, maybe do the iv's twice a week on a monday thursday schedule. Then go on the valtrex 500mg once a day but talk to your doc about adding probenecid which is a gout med but also used to increase the blood levels and half life of antibiotics and it also works on antivirals, your doc will have to check interactions with other meds your on but generally its a safe med and cheap. So using it will increase your bang for your buck so to speak. Should also work for acyclovir if tabs are cheaper but if u do try to get the 800mg strength acyclovir. SAve u money and help give u higher blood levels of the med and it will last longer in your system, eg valtrex has a half life of like 3-4hours, probenecide may increase the half life to 6 hours, these figures i just pulled out of the air so just an example.

I buy my famvir from 4rx and its generic, its lowered my viral load so the active ingredient is there and i have faith in the meds from them. The more orders the cheaper it gets, so i suggest ordering something cheap u might use then your next order u will get a discount of 10% or 20% more pills and it increases till u get to 4 orders of 15% discount or 30% more pills.
i will pm you some details as if i refer someone they can get a discount on their first order, i havent done this before so hopefully it works.

cheers!!!

 

[thecatswhiskers]

Hi Heaps!

Many thanks again ..... There's some great suggestions there, and I will ask her about the Probenecide (I'm on a slow release antidepressant though so I do wonder if there could be an incompatability issue there). Thanks in advance for the 4rx info. I've since looked on their site and it looks good. The stepped discounts a good tip too! )

I looked on MagicPharma too and the Famvir was substantially cheaper on there ($289/60 500mg tabs on 4rx as opposed to $443/180 500mg tabs on MagicPharma). The difference seemed to be was that the 4rx Famvir was by Cipla, whereas the MagicPharma Famvir was by Macleods.

Have you ever heard of/ tried anything by Macleods?! The price makes you a bit suspicious it might not be not very good!!! /

Thanks heaps! )

 

[heapsreal]

Hi Heaps!

Many thanks again ..... There's some great suggestions there, and I will ask her about the Probenecide (I'm on a slow release antidepressant though so I do wonder if there could be an incompatability issue there). Thanks in advance for the 4rx info. I've since looked on their site and it looks good. The stepped discounts a good tip too! )

I looked on MagicPharma too and the Famvir was substantially cheaper on there ($289/60 500mg tabs on 4rx as opposed to $443/180 500mg tabs on MagicPharma). The difference seemed to be was that the 4rx Famvir was by Cipla, whereas the MagicPharma Famvir was by Macleods.

Have you ever heard of/ tried anything by Macleods?! The price makes you a bit suspicious it might not be not very good!!! /

Thanks heaps! )

I have used magic pharma for other things but 4rx have the best av prices. Magicpharma have other stuff that is well priced then 4rx so yeah need to shop around. To tell u the truth i dont actual look at the name of who actually makes them, i just know that the famvir from 4rx works and there generic. As for antidepressants, i dont think probenecide clashes with it but have a google and then ask your doc as well, it could literally prolong your av use by double and save u heaps. I add the probenecide when in a crash for a few days and seems to help some.

I will pm u again with cycloferron stuff too, works well with av's and comes in pills too and is cheap.

cheers!!!

 

[Jenny]

Hi cats

Have a look at the price of Valtrex from Boots internet pharmacy. I got 6 weeks worth at 1gm a day for around 200.

(Just replied to your PM.)

Jenny

 

[thecatswhiskers]

You're a diamond! )

I will defo google the probenecide .... Sounds a great tip to cut costs! Will help too if I ever do the Lyme abx treatment. Will look it up on one of those interaction checkers.

)

 

[undcvr]

Valcyte is the prodrug of ganciclovir, it is much safer on the body than ganciclovir itself, is there a reason why you are trying this before trying Valcyte ?

 

[thecatswhiskers]

Thanks Jenny!

Hi cats

Have a look at the price of Valtrex from Boots internet pharmacy. I got 6 weeks worth at 1gm a day for around 200.

(Just replied to your PM.)

Jenny

I'm sorry Jenny, I missed this post of yours (I seem to be making a habit of that! ) Really appreciate that info .... Did you get a P/X from BS then, rather than get it direct from them? That's a good price, thanks.

How are you getting on on Valtrex? I took it a few years ago when I had shingles, but only for a week. I got on well with it. I'm due to go on double that dose, but due to 'recent events' I will be starting off slow.... More of the 'recent event' in a later post!

 

[thecatswhiskers]

Valcyte is the prodrug of ganciclovir, it is much safer on the body than ganciclovir itself, is there a reason why you are trying this before trying Valcyte ?

Well ..... That was the recommendation from my Doctor .... Valcyte was never mentioned in fact. Is Valcyte very expensive?

I think you've probably hit a nail on the head though ... In my experience anyway (see below)

 

[thecatswhiskers]

Ganciclovir IV experience

Well ...... Basically it didnt suit me (quite badly in fact). I got most of the documented side effects and struggled in for my treatment (dont know how!) on day 3 (after 2 IV's) and was so ill the Dr sent me straight home. The drug wasnt clearing from my system properly (had given me blood tests to check liver, kidneys, blood cell count prior to starting and all were ok to start). Have had to drink LOADS of water to try and help clear it. Still feeling pretty rough, but getting better seemingly (had my last IV Tuesday morning, now Thursday morning).

To be fair, I am pretty bad on most drugs re side effects. I do know people who've done 5 weeks and 3 weeks on it, and all ok.... The 3 week one it turned his health around and back to health. I know of someone that got blood problems after 2.5 weeks on it and were taken off it .... But I fear at 2 days I might've set some kind of record

The Dr said that when I feel better and feel the drug's out of my system to go on the oral Valtrex .... Then maybe back on the Ganciclovir (presumably at a smaller dose/ less frequently). I'm very unsure about going back on the IV though at this stage!!!

Oh well.

 

[undcvr]

I am not sure what your doc is thinking but the antiherpes drug of choice for pple going the IV route is Vistide NOT Ganciclovir (Cytovene ?). IV is very hard on the kidneys especially and Vistide is supposed to be the mildest of them all. Check with cloud on PR about this who actually recovered on Vistide alone even though he is xmrv+. Also Vistide is usually only administered if all 3 herpesviruses are present ONLY: ebv/cmv/hhv6. Some doctors adminster it at 2 viruses.

Otherwise Valcyte, the prodrug of Gancicclovir is a 'safer' oral treatment. Well at least the kidney problems are very low and its other side effects can be managed easier too (folate supplements, SLO).

Yes Valcyte is expensive but so is IV Ganccyclovir isnt it ? The problem here with the dosing is that it was all laid out for kidney transplant patients with the possibility of CMV infection. You may find out that with CFS you might need a longer duration of it. Alot of pple with CFS are finding this out with herpesvirus infections.

 

[thecatswhiskers]

I am not sure what your doc is thinking but the antiherpes drug of choice for pple going the IV route is Vistide NOT Ganciclovir (Cytovene ?). IV is very hard on the kidneys and especially and Vistide is supposed to be the mildest of them all. Check with cloud on PR about this who actually recovered on Vistide alone even though he is xmrv+. Also Vistide is usually only administered if all 3 herpesviruses are present ONLY: ebv/cmv/hhv6

Otherwise Valcyte, the prodrug of Gancicclovir is a 'safer' oral treatment. Well at least the kidney problems are very low and its other side effects can be managed easier too ( folate supplements, SLO).

Yes Valcyte is expensive but so is IV Ganccyclovir isnt it ? The problem here and the dosage is that it was all laid out for kidney transplant patients with the possibility of CMV infection. You may find out that with CFS you might need a longer duration of it. Alot of pple with CFS are finding this out with herpesvirus infections.

Well I won't lie, the side effects etc have been blooming awful! I had kidney pain etc too, despite drinking lots and supplements to support the liver and detoxification.

What made the Ganciclovir 'cheaper' is that although it was 666 for 6 IV's (that '666' should have been a sign!), it was only going to be for a week, and not an ongoing cost ... Then Valtrex for a time, then Imunovir. I think Valtrex and Imunovir are substantially cheaper than Valcyte.

That's really interesting about the Vistide (I think Dr's are behind in the UK, even in the private sector on all the AV stuff); I've never heard them use that. I'm going to collate the info about all these drugs; the Famvir, Valcyte and now the Vistide and approach her about them. She does know my funds are limited so that also could be a factor, I don't know. The only antiviral's I've heard this clinic use are oral acyclovir, valtrex or imunovir .... Or IV Acyclovir or Gancyclovir.

I will look up Cloud's story too.

Thanks very much for all that info, much appreciated.

PS. What's 'SLO' (with regards helping the side effects)

 

[undcvr]

Cytovene is metabolised in the kidney so taking supplements for detox may not really help if they only support the liver and drugs that are metabolised in the liver. Keeping your blood pressure low or LOWER will support the kidneys.

You may find out that Valtrex may not really work or it will work limitedly and only at high doses, this will bring the cost up again. Someone discussed homemade Imunovir here. If that works for you, that will be very very cheap and you can basically buy its 2 ingredients in bulk powder. You may want to consider Artemesia (arteminisin, artesunate) too.

The problem here lies with the fact that just stopping the virus from replicating is not enough. You must allow cells that are infected by the virus to die off and since cells that are infected by the virus are basically immortal cells, those cells will only die off if your immune system can mount an attack on them.
Not many pple with CFS can unfortunately. It explains the relapses and the extended length of our infection and also the extended length of AV treatment.

SLO: is Shark Liver Oil. It stimulates white blood cell formation and has been used by cancer patients on chemo drugs to minimise side effects from drugs.