Appt with infectious disease specialist today: New CMV game plan

[Jayhawker]

I had my first appointment with an infectious disease specialist today. She reviewed all my pre and post transplant data with me. She gathered detailed information about the side effects I’ve been experiencing with Valcyte as well as what had been tried with medication dose changes etc. In addition, she gathered detailed information to determine my risk for exposure to other viral infections over my lifetime. In short I’m at extremely low risk for any of these.

After all of this she confirmed that I do have recurrent CMV which needs a different treatment approach. She also said that some patients experience “concerning” side effects to Valcyte like I am; but there are other medication options. She walked me through those.

She then talked about the treatment plan we’ll follow.

1. Discontinue Valcyte immediately. Suspend Myfortic for 4-6 weeks. That will elevate my WBC count more. Monitor renal function and CMV status weekly with treatment adjustments if needed. The goal is to give my body a chance to pull CMV in check using my own immune system.

2. If #1 doesn’t work restart antiviral medication. She won’t prescribe Valcyte though. Instead she’ll most likely prescribe Maribavir. This antiviral does not decrease WBC count and has very few side effects (loss of taste, diarrhea, and nausea are the main side effects). She is starting the paperwork to get this specialty medication pre-approved by my insurance so the medication can be filled immediately should I need it.

I’ve met a doctor who is up to the challenge of my CMV situation. I’m both thrilled and relieved. I’m hoping that my body’s natural immune system will be able to deal with this CMV. Prior to anti rejection meds entering my life I virtually never got sick—perfect attendance through all schooling including my doctoral degree. I can count on one hand the number of times I’ve had the flu over my 70 years on this earth… with fingers left over! So, hopefully, my natural immune system will take care of this.

I’m a little worried about being totally off the low dose of Myfortic I’ve been on for the next 4-6 weeks. I’m trying to set that worry aside.

Meanwhile, since I will no longer be taking Valcyte, I hope to gradually start feeling better day by day this week. That would certainly be wonderful!

Jayhawker

[Beachgirl32]

Would be wonderful if you start feeling better with the changes they are making. Sending prayers that it all work out for you .🙏😘

[Bassetmommer]

Oh boy this is great news. I love the idea of a doctor up to the challenge. they ALL should have this attitude Wishing you the best.

[drmind]

Hooray! Sounds as if you're on a better track to feeling better. Prayers that the plan works and you're feeling better very soon.

[BookDragon]

The specialist sounds wonderful, Jayhawker! Good luck with the changes; it's great to hear the relief and excitement in your post. All the best!

[WYOAnne NKF Ambassador]

Sure hope this is it for you and you start to get better this week. Positive thoughts and prayers coming your way.

October 15th I will be 24 years post transplant and my kidney is going strong. Today I am in Moab, Utah with my daughter and her family. Will be visiting Arches and Bryce Canyon National Parks. I never have to think about should I travel or not. Hope you get to this point to. I indeed have had a second chance at life and am living LIFE.

[ChristopherW in reply to WYOAnne]

I’m from the UK, nearly 42 years post transplant, and i was in Moab last November. Went to both those National Parks. Absolutely fantastic!!! Hope you enjoy them.

[Parkerbarker]

Well I had cmv that couldnt shake and number kept rising rising and increasing valganclovir up to 77000 viral count and side effects brutal.My transplant pharmacist did her nagic and got me the maribivir and it has been a game changer.within 3 weeks viral load dropped from 22000 to 3000 and zero side effects,xcept every once in a while like once a week for an hour may get tinny taste when i eat something but that is nothing compared to the multiple,horrible side effects from the valgan.I thought "yep that is the difference between a$ 974.00 8 week treatment (the valgan)to the $65,000. For 8 weeks for the maribivar.Literalky changed my life.So much energy now .

[Jayhawker in reply to Parkerbarker]

I’m glad to hear marina it is working gif you. But are you having to pay $65,000 out of pocket for Maribavir? If so, YIKES!!! I’m definitely nit in a financial position to pay $65,000 for 8 weeks of treatment. How often annually do you find yourself dealing with this treatment? To day I’ve only been off valcyte gif 3 consecutive eeeks out of the past 14 weeks. Tgst is until the infectious disease specialist discontinued valcyte 2 1/2 days ago. I’m gradually beginning to feel less if these horrific side effects.

Jayhawker

[Parkerbarker in reply to Jayhawker]

No my transplant pharmacist went thru special program so got it for free,thank god!

[Jayhawker in reply to Parkerbarker]

That’s amazing and excellent news!

Jayhawker

[Darlenia]

So glad you have a wonderful infectious disease specialist handling your situation. I can understand your concern going off Myfortic, it's a scary step for sure. On the other hand, your new kidney is a very close match to your own, so I think rejection is still in the low category. I also suspect that your new drug will do amazing things for you - and you'll soon have your life back. And running circles around all of us!

[Jayhawker in reply to Darlenia]

I got a call from thetransplant center this afternoon. They have ordered an additional allograft test next Wednesday. I suspect they are doing this just to keep an eye on the rejection issue while I’m off Myfortic. This is going to be a rather tense 4-6 weeks. I’m truly hoping my body can knock this CMV down using its own immunity. I’m also hoping this doesn’t trigger a rejection episode. It’s a tense situation. However, ongoing viral infections will over time be very serious. So, they’ve got to get this addressed or I’ll have a high probability of being one who dies from transplant-related viral infections.

My WBC count was up to 6,78 as of yesterday. I had only been off Valcyte for 36 hours at that point and Myfortic for 12 hours. In addition to the elevated WBC count my lymphocyte count was also elevated indicating that I have a viral infection (has to be the CMV) which my immune system is trying to fight. So, it looks like my body recognizes the CMV and is trying to fight it. Now it’s a matter of waiting to see if my body can get it in check.

Before anti-rejection meds entered my life, I rarely got sick. I’ve only had the flu 3 times in the 70 years I’ve been on this planet. Consequently, I think my natural immune system has been strong. I’m hoping it still is. Meanwhile, I’m trying to distract myself from all of this as I try to get back to normal now that I’m no longer taking Valcyte.

Jayhawker

[LisaSnow]

Thank you for sharing this positive news. It is always a blessing to have a partner you have confidence in when battling an invisible enemy. Fingers crossed that all numbers stay stable as you go through medication adjustment.

[Blue-Quilter]

I, too, am glad you got connected with the ID docs! They have become the go-to branch of my medical team for all my UTI's, which I realize are not as serious as CMV. But I'm battling #20 since my transplant, not quite 4 years ago, and it gets annoying!Regarding going off the mycophenolate, I had to discontinue it two months after my transplant because of extremely low WBC counts. I got two shots to stimulate production, which returned my levels to normal, and I never went back on it. That meant they needed to keep my tacrolimus level in a very narrow acceptable range. Unfortunately, that didn't work out, so I was switched to the belatacept infusions after three years of chasing a goal I never met. I'm still not taking the mycophenolate, so it can be done.

And yes, I DO realize your situation is different from mine in many ways, but there are a few similarities. All that to say, I'm happy you have a doc you have confidence in. I'm even happier you seem to be responding to the treatment. Best wishes for a complete recovery!

[Jayhawker in reply to Blue-Quilter]

I am soooo glad to hear that the kidney can survive without Myfortic, perhaps more accurately relying on one anti-rejection medication in addition to prednisone only. That is encouraging!

It’s very early at this point; likely far too early to determine if this new treatment approach will work for me. But at least we’ve got a game plan that gives a chance.

This has been so stressful. Plus I believe that one of the side effects I’ve been experiencing with Valcyte has been heightened stress and more or less mood swings. We’ll see if these decrease as I’m off Valcyte …

Again, thank you so much for sharing your experience!

Jayhawker

[Jayhawker]

Okey, they just posted my CMV data from Wednesday. It has come back as “not detected” for the first time since last May, the month before my first CMV episode.

I’m not entirely sure how to interpret this data but know it’s a good sign. I see my nephrologist next week and will discuss this with her at that time. For the moment I’m just pleased to see this better data.

Jayhawker

[Darlenia]

That does sound like very good news! I think you'll ride this out just fine! We have a friend with a liver transplant who only takes Tacrolimus, no MyFortic at all. He's kept that transplant for decades. So I suspect your other medications will keep you stable too. And getting Allograft tests regularly is a wise step too - that will undoubtedly will catch anything happening early on. You're in very good hands.

[Jayhawker in reply to Darlenia]

They have run Allograft tests on me monthly. At about 8 months it dropped to every 2 months. So, I think they’re just moving it back to once every 4 weeks while I’m off Myfortic. Anyway, I’m glad they’re doing it more frequently right now.

Jayhawker

[ILMA54]

Because of troubles shaking a UTi last spring, they reduced my MyFortic to 1X/day. When I had Covid, they had me stop MyFortic totally for 2 eks.

[Jayhawker in reply to ILMA54]

I have labs again tomorrow. Last week my cmv came in not detected. I’m hoping for the same this week. 🤞

[LavenderRabbit]

Good luck. I hope it works.

[Jayhawker in reply to LavenderRabbit]

We’ll, I had an appointment with the transplant nephrologist last Thursday. She started out by saying that she referred me to the infectious disease specialist thinking it would be beneficial for me to hear the same information from that doctor. But that doctor didn’t give me the same information. Dr Kumar, the nephrologist, stated that she disagreed with what that doctor had done. She spent close to 30 minutes explaining why she disagreed and how dangerous it will be for my kidney to follow the treatment plan that doctor put into place.

I had reservations about part of the treatment plant that doctor prescribed. I shared that with Dr Kumar. However, I

Emphasized that pulling me totally off Valcyte had already greatly improved how I felt and functioned. Consequently, I was not willing to be put back on Valcyte as there are clearly alternatives. She is concerned about living yo the alternatives quickly I think because she’s concerned about me developing immunity to all available anti-viral medications leaving nothing for them to use to treat CMV.

For the time being she restarted Myfortic but at a lower tide. I walked away from the appointment convinced that she’ll force me back on yo Valcyte as soon as my CMV elevated again. I also believe that they aren’t going to be able to get this CMV in check with me. Obviously if they are unsuccessful I’ll likely gif from CMV-related complications. I’ll also likely feel horrid pretty continuously from now until that happens as Valcyte is so horrific on my body.

Am I going yo have to dig my heels in and tell her I will not take Valcyte again? Maribavir may nit be her preference and may nit, in general, be ideal. However, Valcyte is simply not an option for me.

I’m concerned and discouraged.

Jayhawker

[LavenderRabbit in reply to Jayhawker]

This is bad and complicated situation. I’m going to put you on my prayer list and also on my church prayer list. We will be praying for you.

[Jayhawker in reply to LavenderRabbit]

Thank you, I really appreciate that.

Jayhawker

[Darlenia in reply to Jayhawker]

Sheesh. Your transplant nephrologist is really dragging you through through the brambles patch. I really hope ParkerBarker (see above) chimes in for his take on things - he did poorly on Valcyte too and is doing fine on the alternative, Maribavir. In your case, I'd probably go along with the lower dose of Myfortic, but I'd be totally opposed to taking more Valcyte if the CMV returns. There's no purpose in living life if you're too sick on Valcyte to even think about going on - it's your body telling you this. As for Maribavir - It's understandable that your nephrologist doesn't want to put you on it. It's hard to get and it's expensive, the protocol is to do things sequentially with cheaper and longer known meds, and it's "possible" that it wouldn't be good if your body eventually turns against Maribavir since it's the latest and greatest med out there. But, as sure as God made little green apples, Maribavir also will eventually be replaced with something even better. So I say go for the gold standard - you shouldn't have to go back to something that sickens you. My hubby has gone through a lot with his transplant. I recognize that life is short. So I care a lot that he lives life as well as possible during the time he has left. This said, I do want to add that I'm not a medical professional so definitely check with others. I think you'll soon see your way clear. Sending hugs your way, Jayhawker.

[Jayhawker in reply to Darlenia]

The infectious disease specialist supposedly already started the paperwork for approval with Maribavir. Of course, I’m not sure if she moved forward with that after talking with Dr Kumar. I made it clear with Dr Kumar that I’m not willing to go back on Valcyte given what it does to my body. She started talking about all meds having side effects.

I agreed and then told her that it’s the same in special education. No intervention is perfect. They each have strengths and weaknesses associated with them. It’s a matter if matching the intervention to the child’s unique learning characteristics. When you have a choice between a few interventions you then ask yourself which best match the child and which set of problems do I want; which can I effectively address?

She agreed. I then said to her that Valcyte isn’t an option for me given what it does to me; it creates a set of unmanageable side effects. Unlike other meds my body didn’t adjust to Valcyte, it got progressively worse over time. Thus, what may be the first option for many appears not to be for me. I assured her that I didn’t expect other meds to have no side effects; rather, I just hoped for manageable side effects.

I also made it clear that I’m losing hope that we’ll be able to get this CMV in check and full well understand the long term prognosis for me if we don’t.

I do think 180mg of Myfortic is good.

Frankly, the other nephrologist whom I finally told them I would no longer see as I didn’t trust her judgement and would no longer follow her guidance, has been a part of the problem. She bounced all over the place with her treatment approach. She also clearly overcorrected with dosing changes.

So, I know I need to be patient with Dr Kumar. However, even the thought of being put back on Valcyte causes my BP to elevate… I really need my body to figure this out. I gather that I need just enough WBC to keep CMV in check but not so many as to attack the donor kidney. It’s the lymphocytes specifically. They had elevated into the too high range with the infectious disease doctor’s treatment plan. I had seen that and was definitely concerned. So, of course I was glad to see Dr Kumar restart Myfortic but at a lower dose. She’s hoping that this lower dose, the lowest I’ve been on, will elevate my WBC enough for the CMV but not so much as to cause issues for the kidney. I don’t know if there are other options besides Myfortic. If so, she may decide to try them at some point.

Well, I’m exhausted. I’m frustrated. It is well past time for answers. And yet, we’re still grasping at straws. I’m halfway through month eleven post transplant. And these doctors aren’t working together…

Jayhawker

[Darlenia in reply to Jayhawker]

Yes, it's always great to have an open dialogue with transplant nephrologists. It'll be interesting to see if your body continues to keep your CMV in check with the reintroduction of MyFortic. It might do well just like that. So enjoy this wait and see time; try not to jinx it by thinking the worst. You're prepared, though, in case it does go upside down. And that's great! An interesting side note - I noticed that this past Friday, the not-very-responsive UNOS was broken up by the federal gov't. The gov't wants more oversight and accountability. I suspect all transplant centers will make decisions more carefully going forward since outcomes are very important, particularly during the first year of a transplant. So, rest easy in the interim, Jayhawker, until those next labs are drawn. See what happens.

[Jayhawker in reply to Darlenia]

Interesting about the UNOS.

I’m trying to get my mind in a better place. I have thought for some time that my data would suggest smaller dosing changes. That’s what Dr Kumar is trying now. So maybe… Plus, my body had begun creating WBCs while I was still on the high dose of Valcyte and CMV was replicating. Both should have prohibited new WBC. Hopefully this is indication of my body finally figuring this out. If so, they’ll just need to correctly dose Myfortic and Prograf to stabilize everything. It’s just difficult to trust them at this point. And I am truly exhausted. Sleep would certainly help my mental attitude.

Jayhawker

[Darlenia in reply to Jayhawker]

Sleep is incredibly important. I don't have kidney issues, but I do have major sleep problems. Do what you have to do to overcome it. It's a big problem as we age, it was a big topic in my local seniors group recently. I dose myself with melatonin and that works to a certain extent. You're amazing in that you still work. So be kind to yourself...you've got a lot going on. And reach out to your doctors as needed.