Ormond's disease: treatment and personal experience
The treatment of Ormond's disease depends on the course of the disease and the affected organs. The aim is to slow down the inflammation, relieve complaints and prevent organ damage if possible.
Glucocorticoids are often used first, colloquially referred to as “cortisone”. Depending on the course of the disease, other drugs such as azathioprine, methotrexate or mycophenolate mofetil can be used. The latter is known, among other things, under the trade name CellCept and is also used in transplant medicine. Tamoxifen has also been studied for treatment, but is not one of the classic immunosuppressants. Which therapy is suitable, the treating team decides. Information on treatment
In some people, the disease can be significantly reduced. However, relapses are possible, which is why regular checks remain important. If the ureters are concentrated and the urine outflow is hindered, urological measures may be necessary. Disease course and treatment
My experience with medication
My treatment included or included cortisone and azathioprine. Oxycodone and, if necessary, further painkillers were prescribed for pain. I also take omeprazole to reduce stomach acid.
This treatment has helped me to cope better with the disease in everyday life. However, my experience cannot be transferred to all those affected. Selection and dosage of the drugs must be individually coordinated by a doctor.
Oxycodone is a powerful opioid-containing painkiller. It can cause constipation, nausea and fatigue, among other things. Physical dependence and an addiction are also possible. Changes to the dose or discontinuation should therefore be discussed with the attending physician. About Oxycodone
My experience with cannabis
In 2019, I used cannabis for pain management. Unfortunately, I did not tolerate it: During the treatment I developed a severe psychosis and had to be treated inpatiently. At the clinic, I received medication to treat mental health complaints. It took about two months for the symptoms to slowly subside and I felt better.
Cannabis can cause or increase psychotic complaints in some people. Whether treatment is possible must be examined by a doctor. In particular, previous mental illnesses should be taken into account. Information on medical cannabis
Warning signs can be, for example, feelings of persecution, hearing voices, or seeing things that other people don’t perceive. If such complaints occur, medical attention should be sought immediately. In case of acute danger, the emergency call 112 is correct.
From my own experience, I know how hard it can be to recognize such changes myself. That is why partners, loved ones or other familiar people can be an important support.
The psychological consequences and my further course
In 2021, I experienced a severe mental health crisis again, this time with a manic episode. For me, this was mainly expressed by a strong overconfidence and unrealistic ideas of my skills and financial possibilities. For example, I considered myself a professor and doctor, although I had not completed a corresponding degree.
What felt partly pleasant to me at the time was very stressful for my environment. A mania can also lead to risky decisions, such as when dealing with money. The symptoms differ from person to person; psychotic symptoms can also occur during a mania. Information on mania and psychotic symptoms
I was also diagnosed with and treated for a vitamin B6 deficiency. My doctor at the time suspected a connection with my complaints. Whether and to what extent the deficiency played a role in this, I myself cannot judge.
After the manic episode followed a severe depression that has burdened me for a long time. Quetiapine helped me after my personal experience. The further intake and possible changes of the dosage I discuss with my attending physician.
In addition, I take various vitamins and supplements. I have the impression that I feel fitter and more balanced with it. This is my personal perception and not a general recommendation. Such preparations should also be coordinated with the attending physician.
My wish for other affected people
I wish all those affected that their complaints subside and the treatment helps them to regain more quality of life. It is important to me to encourage others: seek support and talk openly about physical and psychological stress.
I hope that your illness will come to rest and you can make your everyday life again with more confidence.
Your Thomas Budenhofer