I am coming up almost four years post lung transplant, with the exception that mine was a double lung transplant. I have had bad side effects with prednisolone which caused problems with aggression, insatiable hunger and weight gain. I am lucky that in Australia I qualified for disability pension as it also caused type 2 diabetes therefore, I qualified for ozempic which helped address the hunger issues and weight gain but did nothing for the mood issues. I am on the lowest dose (5mg) but will be on it for the rest of my life. I dare say we would be on different anti-rejection medication as I am taking tacrolimus and everolimus, originally, I was taking mycophenolate but developed a melanoma, so they ceased mycophenolate and started me on everolimus.
Tacrolimus caused me to develop severe shaking which has now stopped but took almost a year. I have had issues attending the lung specialist clinic due to PTSD and issues with certain lung specialists to the point I would just cancel my appointments, so I didn't have to attend the hospital. I do a spirometry test at home and blood tests locally and then have a telehealth appointment using a hospital portal. I have a social worker who has been my best advocate when I have had issues.
After this amount of time, I was feeling weak and recently commenced testosterone via my GP and didn't even consult with them at the lung clinic. To address my mood, I commenced medicinal cannabis despite the lung specialists reluctance to support me doing so. It clashes with tacrolimus, so I take them five hours apart and have not had any problems. I feel your frustration it is a case of making them listen and explain their inaction regarding your side effects. I have reached the stage now where it is up to me to deal with existing issues or make the specialists accountable for their inaction by way of submitting reports to the hospital stating my issues in writing, this eliminates any denial of the fact the issue has been raised. I sincerely hope you figure out how to address your issues and wish I could be of more help to you. Good luck and keep slugging away!