Predisone

@ebjj4health it sounds like you're having a really rough time with prednisone. And you were on it for 3 months? Why did the doctor put you on it? Were you told about a disease and that you needed to be on prednisone? What was the disease or condition? How much prednisone? Did you explain all these symptoms to your doctor? What were you then told? And why are you on mycophenelate?
I’m not a doctor—no one on Mayo Connect is, so we really are unable to diagnose you. Have you seen a doctor at a comprehensive medical center or a university medical center? They are the best places to go now, especially when you have all these symptoms. Even if you have to drive some distance. It’s well worth it. And do you have someone who can go with you? It’s always good to have someone go with you to doctor appointments, you know, for an extra set of ears.
When I first got sick I had to go to a university hospital because the local doctors had no idea what I had. The doctors were excellent and very caring! And I was diagnosed with CLIPPERS and none of my symptoms were like yours.
Please don’t stop the mycophenalate. The doctors had a good reason for putting you on it on it. They just didn’t explain it well enough, if at all. Please let me know what you are able to do and what you learn.

@becsbuddy
Last November I was having some double vision in my left eye and some dizziness. Brain MRI showed inflammation. Was in the hospital for a couple of days for testing, All of my symptoms were gone and I felt fine before I left the hospital I had no treatment or medicine. I followed up with Neuro at Duke 2 weeks later, and told they were not sure what it was, but started me on high dose prednisone. After 3 weeks started having back pain and night sweats, with no explanation, remained on prednisone for 3 months then switched to Mycophenolate. I actually did not feel bad until after taking prednisone, but no one has an explanation. I did have a positive TB test before starting prednisone, said it was Laten TB. Infectious disease would not treat it until I had a second positive test but both times repeat tested I had been on prednisone or Mycophenolate, so not sure they were valid. But they do say don’t think it’s TB, but don’t know what it is. I am going to get a second opinion at UNC and talk about getting off Mycophenolate. Any suggestions or advice?
Thanks,
Deb

@becsbuddy
Last November I was having some double vision in my left eye and some dizziness. Brain MRI showed inflammation. Was in the hospital for a couple of days for testing, All of my symptoms were gone and I felt fine before I left the hospital I had no treatment or medicine. I followed up with Neuro at Duke 2 weeks later, and told they were not sure what it was, but started me on high dose prednisone. After 3 weeks started having back pain and night sweats, with no explanation, remained on prednisone for 3 months then switched to Mycophenolate. I actually did not feel bad until after taking prednisone, but no one has an explanation. I did have a positive TB test before starting prednisone, said it was Laten TB. Infectious disease would not treat it until I had a second positive test but both times repeat tested I had been on prednisone or Mycophenolate, so not sure they were valid. But they do say don’t think it’s TB, but don’t know what it is. I am going to get a second opinion at UNC and talk about getting off Mycophenolate. Any suggestions or advice?
Thanks,
Deb

@becsbuddy
Last November I was having some double vision in my left eye and some dizziness. Brain MRI showed inflammation. Was in the hospital for a couple of days for testing, All of my symptoms were gone and I felt fine before I left the hospital I had no treatment or medicine. I followed up with Neuro at Duke 2 weeks later, and told they were not sure what it was, but started me on high dose prednisone. After 3 weeks started having back pain and night sweats, with no explanation, remained on prednisone for 3 months then switched to Mycophenolate. I actually did not feel bad until after taking prednisone, but no one has an explanation. I did have a positive TB test before starting prednisone, said it was Laten TB. Infectious disease would not treat it until I had a second positive test but both times repeat tested I had been on prednisone or Mycophenolate, so not sure they were valid. But they do say don’t think it’s TB, but don’t know what it is. I am going to get a second opinion at UNC and talk about getting off Mycophenolate. Any suggestions or advice?
Thanks,
Deb

@ebjj4health
Consider seeing an ophthalmologist for the inflammation. I had similar symptoms and some additional ones. I too was admitted to the hospital as a result of upper, outer vision loss. Multiple tests were done with no diagnosis. Stared on 40 mg of Prednisone. I was seen at Duke Eye Center who promptly sent me to the ER with suspected Giant Cell Arteritis (not arthritis). I was evaluated and an appointment was made to see ophthalmology in the office. I ultimately had a temporal artery biopsy which was positive for GCA, an autoimmune disease. This is considered an emergency in Opthalmology. I am currently being seen by a rheumatologist who manages my care. Every physician I have seen has instructed me to immediately go to an ER as
to avoid further vision loss. This is not to frighten you but to consider a diagnosis that isn't often considered. I hope you find your answer. Be well.

@ebjj4health
Consider seeing an ophthalmologist for the inflammation. I had similar symptoms and some additional ones. I too was admitted to the hospital as a result of upper, outer vision loss. Multiple tests were done with no diagnosis. Stared on 40 mg of Prednisone. I was seen at Duke Eye Center who promptly sent me to the ER with suspected Giant Cell Arteritis (not arthritis). I was evaluated and an appointment was made to see ophthalmology in the office. I ultimately had a temporal artery biopsy which was positive for GCA, an autoimmune disease. This is considered an emergency in Opthalmology. I am currently being seen by a rheumatologist who manages my care. Every physician I have seen has instructed me to immediately go to an ER as
to avoid further vision loss. This is not to frighten you but to consider a diagnosis that isn't often considered. I hope you find your answer. Be well.

These are all excellent responses to these questions. Unfortunately , most of us are not schooled in how to discuss or analyze our own symptoms.
We are then subject to a doctor's personal experience.
We are also not schooled in the best way to exercise and eat. Americans get 24 hr. bad advertising.
But, illness is good in the sense that it starts a learning process . We wake up . This is a good forum for that process to start. I only wish the doctors had time to be more widely informed of something other than "Generic" care.