I am approaching my one year transplant anniversary. This year has been a roller coaster ride for sure. Overall my kidney function has been good and stable.my tacrolimus trough levels varied a lot so the doctors had to keep changing my dosage. I have my good days and bad days. On good days, everything is fine, lots of energy. On bad days I am constantly feeling lightheaded and dizzy. I seem to have no energy. I have spoken to the transplant team and they have not given any specific reason. They don't understand what it could be. At this point, I am thinking of going to other specialists to make sure there is nothing else going on.
I read somewhere that Tacrolimus and Mycophenolate may cause dizziness and lightheadedness. Has anyone or did anyone experience this?
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shash8363
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Hi I'm 19month post transplant and I sometimes go light headed . It only started in the last few months all my levels are fine but to be honest I think the antirejection drugs have a lot to do with a lit if the symptoms we experience. I had a lot of problems in the beginning with mycophenolate and it had to be changed to a different brand has it was killing off red blood cells to much .is your blood count ok ?
I am 17 months post transplant and experience the same symptoms. My transplant team cannot explain the dizziness, lightheadedness and exhaustion. I am pretty certain the immunosuppressants are effecting the dizziness and lightheadedness which is most prevalent when I stand up from a lying or sitting position.
The tiredness has been a symptom since my transplant. Some days I have energy and other days I am dragging. I am 64 so I believe age may play a role in my exhaustion. I am not happy about being tired but I am dealing with it. Know you are not alone; although I cannot offer you any real remedy. Stay healthy.
BE persistent about your symptoms. You shouldn't be feeling like that. Don't blame it on your age. I am 20+ years post transplant and just turned 70. You know your body better than anyone and should be feeling a lot better. See my reply to shash8363.
I felt pretty crappy with 9 percent function and starting dialysis that it is hard to remember when I felt great. I have been exercising for over a year so I have energy. I find the tiredness and need for a nap in the afternoon is what bothers me the most. I am convinced the immunosuppressant drugs do have some effect on me. Thanks for your response
It could actually be a lot of things. I am 20+ years post transplant.
I had my Mycophenolate dose reduced early on, because I was on too high a dose. Dizziness and lightheadedness were my symptoms. My transplant team also switched me to the name brand Myfortic - Mycophenolate is the generic. Even though they are suppose to be the same, sometimes the generic form is just a little different.
Blood pressure meds can also cause those symptoms. I can't take Losartan for BP because it causes me to be dizzy whenever I stand up. Also if your dose is too high for you. For me, I take Toprol in the morning and Cardura at night for my BP. My Cardura dose was reduced from 4 mg to 2 mg because of dizziness.
And if there are days you don't drink enough - it can cause me to be lightheaded.
Maybe go and see your primary doctor and see if he can figure things out if the transplant team is not listening to you. Be persistent. You shouldn't have to feel that way. I have learned that you have to stand up for yourself.
The only time I am lightheaded or dizzy feeling is because I have not drunk enough water.
Hi to all the Transplantees suffering from the dizzies and lightheadness:
I, too, have had the same problem. Since it appears that all of us are in a different age group, I can't think age is the issue. The anti rejection meds list in their packaging instructions that dizziness is often a problem. I have experienced actually falling down and I can tell you, it's really frightening.
Now, whenever I have been sitting down for awhile (reading or watching TV) or first thing in the morning (after sleeping). I sit up straight for a few minutes and take some deep breaths. This has helped a lot. Be sure to move slowly and be sure you are OK before moving at a regular pace.
Although the Transplant Teams seem to understand some of the problems associated with taking anti rejection meds, it appears that you can't understand what you have not experienced.
Since you have no choice but to take the meds, the above actions have helped me, so I suggest trying this method for awhile and see if it helps you.
I am grateful for Health Unlocked! We are not alone!
In my case, as time has progressed, my blood pressure got better so I had to cut BP medication as I was registering low BP while waking up in the morning, BP was 97/57.. I realized that Adequate BP is required for Perfusion or else Kidney function can dietiorate
Part 2, not sure what happened to the earlier msg, it got parsed, anyway .... So I ended up removing one of the BP medications, & now my BP is quite normal with the current dosages & no longer feel light headed.,There are other variables too for Dizziness apart from the Immune meds, is your heart rate steady not too many fluctuations what is the max heart spike and how long it lasts ..a Fitbit or Apple Watch gives you that info, + how do the sodium, magnesium & potassium look, are they in the middle of the range. (not too low or too high). Seeing a PCP is a good idea but any recomendations you get , please keep your transplant team in the loop, My Tacrolimus levels always follow a see saw pattern, I have asked my Team to designate a Tacro fluctuation range, which keeps me at assured as long as my GFr is staying steady. Another reason make sure you don't encounter random dehydration bouts which can make your BP nose dive (I my case) and cause dizziness...Good Luck .
What is your water intake per day? My Transplant Team advised me to stay hydrated. I try to drink 6 bottles of 16.9 oz per day; however, most of the time it's 5.
Thank you All! Yes. I agree with you all. I want to get to the bottom of this too. I want to eliminate other causes for this. I will follow up with PCP. Also like you all have said I will start measuring my water intake again. I believe I do drink plenty of water. Sometime I feel maybe that’s why my BP goes down??!! But then my Sodium is fine. It shows up as 136/138 in my Blood test.
My heart rate is pretty constant. Although I do experience Palpitations sometimes. Since this has been a roller coaster I do get anxious sometimes - especially with COVID.
In any case, thanks again for all your input.
I will post an update if I can figure it out. 👍🏼🙏 🤞
For me my blood pressure goes go down a lot when I feel drizzy. I try to have some kind of caffeine beverage to raise my blood pressure and it helps sometimes to stop the dizziness. Hope that helps. Its something to think about.
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