Thrush after anti-rejection treatments: What helps?

Posted by jbaggi @jbaggi, Nov 7, 2022

I had to go through two rounds of anti-rejection treatments this summer for mild rejection. I finished the last treatment 4 weeks ago. Now I have a case of thrush . This has lasted for 3 weeks.
I was taking nystatin during the treatments. Now I’m on 100 mg of fluconazole every day for 10 days. It seems to be getting worse.
I do have lupus, and have had it for 42 years.

Interested in more discussions like this? Go to the Transplants Support Group.

@hello1234

@jbaggi 😊
Yes, I agree with you. I have heard that with some people (as rare occurrences), vaccines can stimulate the immune system in a way that can cause mild rejection. I am so surprised that after six years, you are experiencing this now. Maybe there is something related to the vaccine and the way your system experienced it. I had four unsuccessful vaccines, then Evusheld, then got sick with covid and needed an infusion of monoclonal antibodies. That was my covid experience.
Regarding ALLOSURE, my test results started at .18, then went to .20, then .23 and I am due for another test in January. My scores have slowly crept upwards, which is not a good thing. What have your ALLOSURE results look like?

Jump to this post

I really can’t remember. I’ll ask when I see the Doc at the end of February.
I have read several articles that state that the AlloSure test is very flawed for determining rejection. Biopsy being the only true indicator. So much contradictory info out there.

REPLY

@jbaggi
Thanks so much for all the discussion! Yes, please keep me posted on how things are going after your doc appointment. I read the same articles. I am hopeful that with no signs of rejection or infection on your latest biopsy, the inflammation may calm down over the next month or two by itself. Please stay in touch as you hear more. I am going for my lab work tomorrow to track how my BK is doing.

REPLY

Do you have an update to share? What worked for the thrush?

REPLY
@jbaggi

I had my first ALLOSURE test several years after my transplant. My second one was in May. I had another one last month. My personal opinion is that they should be done on a regular basis. Maybe we would have caught my rejection a little quicker. Not sure though.
Doc didn’t say anything about what may be causing the inflammation, but I’m sure they’ll let me know my next appointment.
I probably shouldn’t say this but I had absolutely no problems with my transplant until I started getting the Covid vaccines. In fact I didn’t have Covid for two years but got it two days after my 4th vaccine.
My Doc assures me the risk of rejection after getting the vaccine are rare, but it does happen.
Thanks for checking in.

Jump to this post

Hi @jbaggi 😊
I hope all is well with you! I know you said you are taking another ALLOSURE and DSA test in late February to monitor your inflammation. You also mentioned that you have had ALLOSURE tests in the past. My test result numbers are climbing, but not high enough to warrant a biopsy yet. In the past, what kind of Allosure and DSA blood results did you get? I am getting concerned about my numbers. I have lowered immune suppression meds to fight my BK virus (for the last 5 months).

REPLY
@silvergirl36

Do you have an update to share? What worked for the thrush?

Jump to this post

@silvergirl36, I have just now seen your question about Thrush treatment and want to say that had 2 cases of oral thrush since transplant and was prescribed the medication, Nystatin Swish and Swallow.

Interesting for me is that I went to the ER when I began to feel like I was swallowing broken glass while deciding to call doctor in a few days. But as can happen, that was not the best choice! Why do these things always get worse after hours when the doctors offices is closed? This occurred after a hiking trip and airplane flight and began as a dry scratchy throat that I credited to dry mountain air, exertion and breathing on uphill trails, and the dry airplane air. I later learned that those 3 things, plus the need for extra use of my albuterol inhaler for exercise induced asthma, had set me up for a 'perfect storm' kind of scenario for thrush. I had never had it before. The ER gave me a 5 day prescription and tole me to see my PCP at the end of 5 days. My PCP added another 5 days so I used it for 10 days.
One time after that, when I began to feel like something was going on, I contacted my PCP and we caught it early. The Nystatin again worked for me.

Silvergirl36, I read that you are a caregiver. Is this the kind of information that you were looking for?

REPLY
@rosemarya

@silvergirl36, I have just now seen your question about Thrush treatment and want to say that had 2 cases of oral thrush since transplant and was prescribed the medication, Nystatin Swish and Swallow.

Interesting for me is that I went to the ER when I began to feel like I was swallowing broken glass while deciding to call doctor in a few days. But as can happen, that was not the best choice! Why do these things always get worse after hours when the doctors offices is closed? This occurred after a hiking trip and airplane flight and began as a dry scratchy throat that I credited to dry mountain air, exertion and breathing on uphill trails, and the dry airplane air. I later learned that those 3 things, plus the need for extra use of my albuterol inhaler for exercise induced asthma, had set me up for a 'perfect storm' kind of scenario for thrush. I had never had it before. The ER gave me a 5 day prescription and tole me to see my PCP at the end of 5 days. My PCP added another 5 days so I used it for 10 days.
One time after that, when I began to feel like something was going on, I contacted my PCP and we caught it early. The Nystatin again worked for me.

Silvergirl36, I read that you are a caregiver. Is this the kind of information that you were looking for?

Jump to this post

Thank you so much for the great information. The early signs of what to look are most helpful and knowing what works to resolve the issue is wonderful. Hopefully, we won't need it, but this info will certainly be in my hip pocket, as they say. 😉 Thank you so very much!!!

REPLY
@hello1234

Hi @jbaggi 😊
I hope all is well with you! I know you said you are taking another ALLOSURE and DSA test in late February to monitor your inflammation. You also mentioned that you have had ALLOSURE tests in the past. My test result numbers are climbing, but not high enough to warrant a biopsy yet. In the past, what kind of Allosure and DSA blood results did you get? I am getting concerned about my numbers. I have lowered immune suppression meds to fight my BK virus (for the last 5 months).

Jump to this post

Hey:
Don’t know what my numbers were, but they were fairly high. I tried checking mychart for results but they weren’t listed. I’m repeating both tests on Feb 6th so I’ll let you know what they are.
I know what issues you can have with rejection drug doses and infections. I’ve had breathing issues for the past two months that won’t go away no matter how much prednisone or antibiotics they give me. I have an appointment with a pulmonologist the same day I’m at the transplant clinic. Hopefully they can figure it out.
I hope you get your issues resolved soon. I know it can be discouraging at times , but hang in there. Docs can usually get it figured out.

REPLY
@jbaggi

Hey:
Don’t know what my numbers were, but they were fairly high. I tried checking mychart for results but they weren’t listed. I’m repeating both tests on Feb 6th so I’ll let you know what they are.
I know what issues you can have with rejection drug doses and infections. I’ve had breathing issues for the past two months that won’t go away no matter how much prednisone or antibiotics they give me. I have an appointment with a pulmonologist the same day I’m at the transplant clinic. Hopefully they can figure it out.
I hope you get your issues resolved soon. I know it can be discouraging at times , but hang in there. Docs can usually get it figured out.

Jump to this post

You are awesome @jbaggi 😊
I always appreciate how strong and upbeat you are! I am so sorry to hear about your current breathing issues. Luckily, February 6 will be here soon! Please keep me posted on how things go for you and thank you so much for your quick response. I look forward to hearing your update after you see your docs!

REPLY
@jbaggi

Hey:
Don’t know what my numbers were, but they were fairly high. I tried checking mychart for results but they weren’t listed. I’m repeating both tests on Feb 6th so I’ll let you know what they are.
I know what issues you can have with rejection drug doses and infections. I’ve had breathing issues for the past two months that won’t go away no matter how much prednisone or antibiotics they give me. I have an appointment with a pulmonologist the same day I’m at the transplant clinic. Hopefully they can figure it out.
I hope you get your issues resolved soon. I know it can be discouraging at times , but hang in there. Docs can usually get it figured out.

Jump to this post

@jbaggi, I like your realistic and positive vibes! Yes it can be discouraging at times, and we do have to trust our doctors, the experts. I have complete trust and confidence in my Mayo transplant teams and my PCP, who have guided me in the right direction for 13 years post transplant. It sounds to me as if you are under the care of a very competent and caring team, too. I hope that in 13 years you will be announcing the same thing.

@jbaggi, @hello1234 - Here is a support group where members are talking about ALLOSURE tests as well as other tests for rejection. I know that you will enjoy meeting and sharing with other about the tests.
-Transplants: blood test to test for rejection
https://connect.mayoclinic.org/discussion/transplants-blood-test-to-test-for-rejection/
jbaggi, I will be thinking of you as you have your appointment with the pulmonologist. I hope that you learn something about your breathing issues.
I experienced breathing issues several years after transplant, and we think my issue was related to lowering and getting off prednisone (as indicated by research and combination of liver and kidney transplant).

REPLY
@rosemarya

@jbaggi, I like your realistic and positive vibes! Yes it can be discouraging at times, and we do have to trust our doctors, the experts. I have complete trust and confidence in my Mayo transplant teams and my PCP, who have guided me in the right direction for 13 years post transplant. It sounds to me as if you are under the care of a very competent and caring team, too. I hope that in 13 years you will be announcing the same thing.

@jbaggi, @hello1234 - Here is a support group where members are talking about ALLOSURE tests as well as other tests for rejection. I know that you will enjoy meeting and sharing with other about the tests.
-Transplants: blood test to test for rejection
https://connect.mayoclinic.org/discussion/transplants-blood-test-to-test-for-rejection/
jbaggi, I will be thinking of you as you have your appointment with the pulmonologist. I hope that you learn something about your breathing issues.
I experienced breathing issues several years after transplant, and we think my issue was related to lowering and getting off prednisone (as indicated by research and combination of liver and kidney transplant).

Jump to this post

Thanks for your comments. I read the posts in the support groups. Especially liked the one that called prednisone satan’s tic tacs. I can really relate to that. Thought it was hilarious but true.

REPLY
Please sign in or register to post a reply.