Anyone have breathlessness with changes in antirejection meds?

Rosemary, so sorry I didn't see these posts until now. They were sent to my junk folder!!
I definitely have days that tremors from prograf is worse. I find that with Prograf I don't seem to have as many of those days as with Tacrolimus, the generic.
I have a tough time with cardio work but I make it to the the gym most times 2 days a week and occasionally 3 days.
So hope you are doing better now.
We transplant survivors are a vital part of each others' lives.
Sending you blessings, and cheering you on!!

The comments above by Rosemary duplicate my history with Prograf. It is especially signify that when ever I stress, like uphill walks or lifting very heavy objects. As I’ve gotten older ( I’ve been on Prograf for 18 years) the out of breath and chest pain has increased. I am taking Prograf as a liver transplant patient. I have had a battery of tests to rule out heart and lung issues. About the only reason for shortness of breath points to the Prograf. Any suggestions on how to combat this side effect.

Hi @rosemary 😊
As you know, I am a two year kidney only transplant patient. But I do take Tacronlimis and Cellcept. I am curious why after all these years, they are adjusting your Tacronlimis dosage and Prednisone? What is your current Tacronlimis blood trough range target? Did you fall out of range or was there another reason for the adjustment? ....Also Prednisone change too? I am wondering why the changes now.

Hello,
It looks like this original post was made 6 years ago. However, maybe the responses now are because someone else is currently dealing with a similar experience.
If you are experiencing difficulty breathing, I would discuss the possibility of switching your medications. There are other options. I discovered after two years, that for whatever reason, my body did not respond well to Tacrilimus. I had a variety of side-effects that culminated in acute pancreatitis. I am currently on Cyclosporine and Mycophenolate Acid, and I feel much better. Cyclosporine has its own side effects, as does any immunotherapy drug. But overall, my body responds much better to Cyclosporine and my kidney numbers have improved, so win/win:) Each body is different. And sometimes our body chemistry shifts around and things that used to work, no longer work. My advice would be to talk to your doctor, and if the side-effect is adversely affecting your overall sense of well-being (which breathing is kind of important:), then be sure to advocate strongly for your self and see what change is possible.

@rselbie, I want to welcome you to Connect. Am I correct to assume that you have been taking Prograf for 18 years for a successful liver transplant? You are to be commended for taking good care of your precious gift. I am 13 years with my beautiful transplanted liver and kidney, and I am also feeling some of the effects of aging. I don't know if your Prograf is the culprit, but it does sound like your doctors have ruled out lung and heart issues.

I feel that I need to update my original post that was written 2016. At that time, my Prograf/tacrolimus dose was changed at the same time that my prednisone was reduced. (I don't think that was good timing, it only complicated things. ) The Tac was raised because of a series of low readings. Coinciding with that was when the transplant team, (based on research) decided that I was a candidate to eliminate the 5 mg daily prednisone. Like you, I was tested by pulmonologists and cardiologist with everything coming back normal. My Tacrolimus was restored to normal level, and the difficult breathing continued. it was my pulmonologist who diagnosed me with an exercised induced asthma. My pre-transplant hiking/breathing history were his reason for this assumption. He says that the prednisone had probably kept it hidden and under control. My experience is that it is brought on by allergies in spring and fall, by humidity, and by exertion. A solution for me is a daily prescription of Montelukast/Singular for the asthma and allergy. I also take a daily inhaler during the spring/summer/fall seasons in Kentucky. And I have a rescue inhaler for use when active outdoors. So, for me, the Prograf/tacrolimus was not the culprit for my shortness of breath.

I had my annual evaluation in May of this year. I mentioned a 'new' shortness of breath and light headedness. Since all my labs tests were normal, we discussed the possibility of blood pressure meds. My PCP monitors my BP and it has been under control with lisinopril and amlodipine. He suggested that I try taking the amlodipine in the evening at a lesser dose. I started in mid June and am having good results - no more lightheadedness or breathlessness when climbing stairs!.. My BP has been good.

@rselbie, Is there any possibility that your blood pressure is involved?

Rosemary, Thanks for the detail. As to your question about my blood pressure, mine is fine. I do take a 50 mg Cozaar tablet once a day. BP is 120/70. I don’t have asthma. I do have allergies year round. I take over-the-counter drugs like Claritin or Allegra. I don’t take them every day only when I really have an attack.
I take 1 mg tacrolimus twice a day on 12 hour cycle. I religiously adhere to the 12 hours between doses.
My pulmonologist thinks I am just deconditioned. Although I am very active, I don’t have a exercise regiment. So I’ve begun walking 30 minutes a day twice a day per his recommendation. I will wait and see if this makes any difference.
My Internet research has shown that tacrolimus can cause shortness of breath and chest pain in four out of 20 patients.
I haven’t been back to the Mayo Clinic in Jacksonville in 10 years. I have a requested appointment. Will see if face-to-face discussion with a Mayo doctor makes any headway to solve this problem.
Again thanks for the follow up.

@hello1234, My prednisone was eliminated when the research at Mayo showed that I could. Keep in mind that I hade a kidney transplant - and a liver transplant. It was a simultaneous liver and kidney transplant meaning 2 organs with 1 donor and 1 surgery. My liver and kidney were already compatible before transplant, and that works to my advantage.

My tacrolimus trough level is stable and slightly below the my target trough range. It works well for me and my labs and liver and kidney are doing well. When the tacrolimus was increased in the post that you are referring to, the tacrolimus level had taken a small drop that concerned the person reading the chart. It was a coincidence that the prednisone and tacrolimus were changed at the same visit and that I reacted the way I did.
It is amazing how different all of us are!

I have been surprised at my exhaustion lately and realize my breathing gets tighter as I become more exhausted. Today when walking my dogs (in Arizona and surrounded by national parks) I was keeping an eye out for snakes and javelina that find home in this tesort community. I became concerned that I was beginning to feel weaker and that I would have to cut my walk short. Then suddenly I recognized the shortness of breath and weaknes. I remembered a panic attack I had in my 40s.
It dawned on me that I am so concerned about my new physical limitations that I was becoming anxious. This in turn was starting to creep toward precursor to panic. Just realizing that tremors and tiredness has left me with internalized worry was very relieving. Because of side effects of meds and healing I may not be able to do all the physical activity I used to do but I can do more than I am doing now as I realize and relax my anxiety.
Next step for me is encorporating relaxing and calming exercise and practices into my week.
Best wishes, Barbara

Hi @ajdo129 😊
It sounds like you have some very pretty areas to take your walks! (I would be concerned about the snakes too). I never heard of javelinas so I will need to google a picture of them.
I think it's very positive when we all have moments of self-awareness that help us "reset" our expectations and ultimately make us happier. I like your idea of adding relaxation exercises. I need to add calm into my week too! It's very easy to get into panic mode.

hello1234, You asked Rosemary why her meds were changed; from what I understand, post transplant meds are commonly changed over the years. They may lower the immunosuppression meds for example. I think the doses are initially higher right after transplant because that first year is critical concerning rejection episodes.