One year follow-up with valcyte, colchine and doxycycline

I'm a 61 year old health care professional who developed acute onset of virally induced cfs approximately 11 years ago. I was treated for 7 months with Valcyte under Dr Montoya's supervision. I never fully recovered and had to stop the Valcyte secondary to severe since effects ( actually felt my cfs was worse). I seemed to improve for 6 months following the cessation of this drug and returned to work. Since then, my condition slowly deteriorated until I had to retire from my career on 9/28/13.

I began seeing Dr. Montoya again in late December where I began on a low dose of valcyte (225 mg/ day). This dose was increases to therapeutic dose of 900mg/day over a 2 1/2 month period. Colchicine was added to my regimen at 9 mg/day for the past several months as an anti-inflammatory drug. Over the past 4 months I was started on doxycycline because I had reached a plateau and my mycoplasma pneumonia titers were high. It is note worthy that I tolerated all my meds very well because I started at a low dose and gradually increased it until the drug was at the therapeutic range.

My health has improved greatly from spending 50 percent of my time in bed to be able to ski again at a advanced/ expert level without crashing. I still have good and bad days but much less severe bad days and much improved good days. I now have episodes where I feel completely normal. This is the first time in 11 years I've had these feelings.

Things I did differently compared to my first time being treated.
1) I retired
2) I don't push myself unless I feel good
3) I'm better at reducing my stresses in life
4) I exercise regularly in a very controlled fashion
5) my sleep habits are a priority and are consistent.

I feel this drug regimen and my life style changes have had a very strong positive effect on my health. I'm scheduled to see Dr. Montoya at the end of Feburary. If anyone has question for Dr. Montoya, I would be happy to relay them to him.

Comments

This my very first post on PR, although I am an ME veteran. I really want to thank you for sharing your experiences with Valcyte. Since I'm about to start the therapy with Valcyte, but I'm not a patient of Prof. Montoya (couldn't wait for 3 years before being seen at Stanford) I'm looking for some guidance from all of the PWME who have gone down the road with this A/V. I'm very aware that we're all different and therefore react differently to drugs and therapies and I've been thinking that starting with the "classic" loading dose (1800 mg x day for the first 3 weeks) seems absurd and exaggerate, after so many years of all the herpes viruses running rampant and creating havoc on my immune system. My most practical concern is how do you split the 450 mg pill, which kind of cautions do you take since it says not to crush it? How about the safety labs? How frequently does Montoya monitors your liver functions, CBC?
I appreciate all the info and input that you can give.
 
Dr. Montoya has no concerns about splitting the valcyte 450 mg tabs. I am also a physician and see no problem with this.
I usually test my liver function, kidney function and complete blood count every 6 weeks. I've not had any problems so far. Montoya has your own primary care doctor monitor these test. My personal experience with valcyte and side effects was more to do with dosing. Montoya now seems to be keeping his patients on this drug for one to two years. There is no reason to have to take a large dose up front to have a good response.
Montoya told me that when he first started to use Valcyte for cfs patients, he used the recommended dose schedule for cmv retinitis. He later discovered that many of his patients were not tolerating the loading dose and subsequently started using a much smaller starting dose and then increasing when the patient tolerated the dose. He has noticed no negative consequence of the dosage schedule change except his patients tolerated the drug better.
He now appears to be adding an anti-inflammatory drug with his antiviral therapy. He believes inflammation from csf is harmful and should be treated. He claims he has good success with this combination.
 
Thank you Butydoc for your reply.
My prescribing dr. is a young colleague of Prof. Montoya and he seems quite "stuck" on the loading dose … I have mentioned my skepticism about it to him and his answer was not very clear but had to do with a possible resistance scenario.
I was on Famvir for 9 months at a very high dose and seemed to tolerate it quite well, but that was a few years ago when I was in a good phase of the disease.
I spoke with my rheumatologist yesterday and mentioned the anti-inflammatory that Prof. Montoya is using (Colchicine?), but since he's not the prescribing dr. for the A/V he just told me that it's quite an expensive drug that got "repatented".
I don't have a primary care physician and I don't really have the energy to shop around for one, I consider myself lucky to have Dr. K as my ME specialist and an experienced rheumatologist that acknowledge the existence of ME and has been open minded to look up and prescribe LDN for fibro (which I think is the hallmark symptom - aches and pains- of ME and one of the signs of inflammation).
I've safety weekly lab request for liver and CBC for the first 3 weeks and then monthly.
Can you ask Dr. Montoya if I should insist on Cochicine for the inflammation?
Another question I have for him (since you talked about Abx treatment for Mycoplasma), should co-infections (bacterial/protozoan) be treated aggressively before or at the same time of Valcyte?
Any input is very appreciated.
 
I know that Dr. Montoya prescribes a number of different anti-inflammatory drugs. He tries to use the drug with the least side effect/toxicity. He told me if the chochicine didn't produce a positive therapeutic effect, he would then try the next teir of drugs which have a less safe profile. Rituximab is one of the last drugs he would consider. I find this interesting since Dr. K was his post doctoral fellow.
Concerning the use of an antibiotic along with the anti-viral for co-morbid conditions, he actually prescribed doxycycline at my request. I probable saw the greatest positive change in my symptoms after combinding the two drugs. I reached a point before starting the antibiotic where I seemed to stall in my progress.
 
Yes Dr. K was his post doctoral fellow and he is a great ME doctor and as all ME doctors he "experiment" with his patients' approval, if you see what I mean ;). In the end many drugs are used off label and most ME doctors sort of specialize in the use of specific therapeutical approaches. As far as I know Dr. Peterson is probably the one that uses the most drugs, probably because he has been sticking around us for the longest.
I personally consider Rituximab the last big gun and I would resort to it only if and when I was enrolled in a clinical study, but I understand other PWME that have tried it or that are seriously considering it. I also reserve myself the right to change opinion because the disease is chronic =very tasking and invalidating and full of ups and downs. It's hard to remain firmly in command of our failing bodies... May I ask you if the doxycycline is for Mycoplasma?
Thanks again for your reply, I'm sure you know how crucial it is for us to feel connected and exchange informations. That's why we are here on PR.
 
Yes, the doxycycline was used for mycoplasma pneumonia. The Igg titers were 1:512.
 
Thank you so much for the update!! It is so helpful to us!!! And so glad you are doing so much better!!! I am also a patient of Dr. K and can't understand why the treatment strategies differ so much from each dr. I.e, Montoya, Kogelnik, Klimas, Lerner and Peterson. I wish they would compare notes and agree on a protocol. In a perfect world maybe lol. Best of luck to you!!!
 
im 27 years old got a prescription for it im in canada... got hhv6 and mycoplasma pn. so similar situation like you... doctor wants to put me on valcyte i read the side effects kinda scary but no other options i guess .... only thing holding me back is the money i can't afford it atm even though i have th e prescription... in terms of mycoplsma i will be starting plaquneil again with azithmycin, and septra. i feel encouraged and brave at the same time after reading your review... just have to figoure out how to get a cheaper version of it somehow
 

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