okey, I am in the high risk category for CMV (R-/D+). I had an initial bout with CMV earlier this summer. After 5 weeks of treatment (Valcyte 1800mg daily) my viral liad was at <35. It stayed there for only 4 weeks. Than it elevated. Over two weeks it elevated to 501. They restarted Valcyte
So, have any of you experienced anything like this with CMV? Was your transplant team able to get it in check? I should mention that I’m slightly more than 9 months post transplant at this point,
Jayhawker
No experience to share, but prayers and positive thoughts that you can get this under control.
I had a serious talk about this with the transplant nephrologist at my appointment last Tuesday. Unfortunately the neph I was slotted to see was the one who pulled me off Valcyte 2 months early when I also had severely low WBC count. She essentially created the perfect host (me) for the CMV virus to set up residence in my body. Consequently I don’t have much confidence in her treatment strategies. I’ve asked never to be scheduled with her again. None of the other 3 nephs in the transplant center agreed with what she did—that was clear before I tested positive for CMV. So, I decided it was time to make this request.
While I might well have developed CMV regardless, it would have been prudent to follow treatment guidelines. At least then I wouldn’t have to wonder whether this could all have been avoided. Nevertheless, at this point the focus has to be developing a treatment plan that greatly minimizes these reoccurrences of CMV while still protecting the donor kidney.
Jayhawker
Stay your course. It's difficult to know more than our doctors sometimes and even harder to abide by their decisions. But, do what you know is best if you can. Keep us posted on this journey
I agree. I had major misgivings when that nephrologist pulled me off Valcyte early. Apparently they were well-founded. And yet this is so complicated I am most uncomfortable taking a stance against any of them. In this case it’s clear the other three nephrologists in the transplant center questioned the fourth nit following treatment protocol. One said I’d have to be out back on Valcyte within a few weeks. But I wasn’t sent back to him so that didn’t happen a second reversed the fourth’s treatment protocols twice. The third responded to my question about why I was taken off Valcyte 2 months early when I was high risk for CMV. (The fourth had consistently told me I was low risk .) the ihird answered my question by telling me I hadn’t been taken off Valcyte early. I told her the date that had been ordered and by whom. She checked my chart and then says not all nephrologists approach CMV management similarly and then quickly moved on… The fourth nephrologist has made a few other notable missteps. So, I’ve come to the vonclusion that she doesn’t know what she’s doing with my case… However, I may well be wrong. This is stressful.
Jayhawker
It easy to say, but I'll say it: try not to add too much stress to the situation. It doesn't help. It does sound complicated with so many "cooks in the kitchen," but keep questioning their advice if you feel it is not right. It may be uncomfortable to do so, but its your life and I suspect you're a fairly intelligent person to make reasonable requests about treatment. You could be wrong, but I think intuition is telling you that your're not. Better wrong than sorry. Blessings....
I’m not so sure I did as well as I do normally as far as not heightening this situation last week. Unfortunately a side effect of Valcyte is anxiety and high emotions. While I try to keep them both in check while on Valcyte, it’s a major struggle. I truly wish I had a significant other to go with me to these appointments. I may need to check to see if there are patient advocates who could step in and attend appointments with me at least until I’m off Valcyte. I’m even experiencing occasional hallucinations with this medication. I’ve seen my mother standing at the bottom of my bed in the middle of the night 7 times while in this Med thus far. She’s been gone since 1997. Hallucinations are yet another side effect of this medication.
Jayhawker
Hi Jayhawker,
So sorry to hear, Sending you prayers and hugs. You are a strong, methodical and compassionate person- and that is very clear from your posts. Please Continue to believe in yourself and keep standing up for yourself. This too shall pass and I hope and pray that this phase is behind you soon🙏
I recall that you are a prof. Can you reach out to a colleague or a friend , a TA or even a student to accompany you. You can also reach out to an NKF chapter in your area.
As for side effects of the medicine… have you tried mindfulness meditation. I think it’s very helpful generally in reducing stress and staying positive and strong. Sorry if I advised more than I should have🙏
I hadn’t thought about the local NKF organization. That’s an excellent idea!
I have a strong belief system so spend much time in prayer daily. It does calm me. I honestly think that this heightened stress is another side effect of Valcyte. It’s just not close to typical for me. But good suggestions from you!
I did send a message to one of the nurses this morning to provide a bit more information. But I’m sure having someone there with me for appointments would be most helpful.
Unfortunately I’ve had to keep this quiet with work. Pretty strange that I’ve been able to do that, actually. But my campus has terminated 33 tenured faculty for no cause. The campus is in extreme turmoil. Most of my close colleagues have left, one was terminated, the others have found other jobs. We no longer have graduate assistants. And my students are from throughout the nation. Frankly, it’s a pretty bizarre situation at work. But I’ve needed to keep my health insurance in place long enough to get full Medicare coverage set up, etc.
This is my last year. I’ll retire in July 3, 2024, after a federal grand I’m directing is finished. I’m looking forward to retiring. That will automatically eliminate some stress.
Well, I’ll contact the local NKF chapter to see if they have someone who will come with me to appointments. That really is an excellent idea. And I’ll reach out to some friends from undergraduate school whom I’ve known for decades to see if we can set up some sort of virtual support group. I haven’t been well enough to attend a church where I now live since moving here a few years ago. Hopefully they’ll get this stuff calmed down enough that I can join a church group here soon. My neighbors have been invaluable!
Jayhawker
How is your cvm fight going? Ill bet you got a resistance to the val now.yes the hallucinations are crazy on that.After developing resistance to that,lividity,am now on brutal regime of foscarnet iv infusions which let me tell you are almost killing,plus it is raised my creatine from 97 to 137 drppoed my potassium,calcium,magnesium to below what they should be and im a useless lump on the bed 24/7 my viral loads dropped to untectable last week so they lowered my dose from every 12 hours to every 48 and loads jumped to 1200 so they want me on this poison another 3 weeks.im scared it will completely kill my kidney in that time.will this virus ever leave or will it just be laying in wait forever
I’m so sorry to hear about your situation.
In my case they discontinued Myfortic. They increased my Tacrolymous by .5mg daily and left my prednisone as it was. This happened 10 weeks ago. My cmv data has been as follows:
<35
<35
Not detected
No detected
No detected
Not detected
Not detected
Nit detected
Not detected
Not detected
They discovered that I have T-LGL leukemia. I saw an oncologist this past Fri. In short, it’s the leukemia that has been causing my issues. He said that he’d have pulled me off Myfortic if they hadn’t already done that. Apparently Myfortic in combination with my leukemia led to my ongoing CMV recurrences. In addition, they don’t use Neupogen injections with leukemia patients. It doesn't work well and causes the severe and long lasting bone and joint pain I’ve endured.
Anyway, we now know what’s been causing my issues. He assured me that my CMV is now under control. He’s running a few tests to see if I have an autoimmune disease. I guess many with LGL leukemia do.
I’m exhausted but think we may finally be to the end of this nightmare,
Jayhawker
Im going to talk to my nephrologist,infectious dr about stopping mycro as when they stopped in hospital my cmv dropped 500000 to 15000 in that week then next week undectected.then they put me back on mycro and next viral check went up to 1200,i think the mycro is the catalyse here.
It was similar with me. They stopped Myfortic and my viral load dropped to not detected in 4 days. They then restarted it and the CMV came roaring back immediately.
Jayhawker
Wow, Valcyte sounds like a medication from hell. Still. Even with high anxiety and hallucinations, I still put my money on you asking some reasonable questions about treatment. Stop doubting yourself. I'm sure these doctors understand.
I'm sorry that you have to do these appts alone. How about trying to hire a nursing student or one on a health related career. It woukd be valuable experience for them
And, students are always looking for work. Good luck. Good luck
Keep me posted.
Well, thus nephrologust does have extremely poor patient evaluations. Their comments are very similar to my experiences with her. I’m just never so stressed out and easily upset. That’s unsettling. I’ll find someone to go with me. Another person in this group suggested reaching out to NKF. We have an office in Johnson County fairly close to where I live. Anyway, I’ll start there on Monday.
Jayhawker
Hi Jayhawker,
I am so glad that the NKF office is close to where you live. Hope and pray that you get all the help that you need there🙏 sorry to hear about the state of affairs in your university. But will be great to have a support group of friends. All the very best to you🙏
I am sorry that viral replication is not under the control everyone hoped for. I don't know enough about your medical situation to comment on if pulling you off valcyte was "good" or "bad", however I do know that if they have good enough reason to believe valcyte is the cause of your extreme low WBC they didn't have a choice but to discontinue you on it until your WBC came up.to a reasonable level. Remember without proper WBC any little infection could put your life in danger.Medicine isn't perfect and doctors can only work with what's available to them and make decisions based on the severity of the choices. Viral count is dependent just as much on how healthy your own immune system is, and if Valcyte is unfortunately damaging your immune system, I am afraid they didn't have a choice but to discontinue it.
I hope you can try to keep calm and patient in order to prioritize the issues to address. Stay hopeful that all this will work out well at the end and be strong.
Unfortunately discontinuing Valcyte did not improve my WBC count. The only thing that helped my WBC count was Neupogen injections. Of course I’ve been most concerned about my extreme low WBC count. It has been a major concern for months for the reasons you mentioned. However, as I’ve said, other nephrologists on the team, all of them, disagreed with the decision to discontinue Valcyte.
Nevertheless, we are where we are. We can only go forward from here.
I will say this extremely high dose of Valcyte has caused a number of difficult symptoms, both physical and dispositional, including hallucinations, heightened stress levels and rollicking emotions. That’s definitely not helping nor remotely normal for me.
I’m planning to follow a suggestion made in the forum and reach out to the local NKF chapter to see if there is someone who could come with me to these appointments at least until I’m more myself emotionally.
Jayhawker
Hullo again Jayhawker. I came here looking for info on this specifically. I am almost 7.months out of transplant and was on prophylactic Valcyte until 2 weeks ago. This week I go for my 6 month eval and bam, CMV+. I am high risk with donor+, recipient-. Wondered how things are working out for you. I started at 1800 mg of Valcyte today and am concerned about side effects as I had some nasty ones at a quarter that dose. How are you doing..I note that your last response to this thread was quite awhile go. X
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