My daughter has been on a monthly Haloperidol injection for several years now, with no side effects, except weight gain. That medicine has helped her to regain a normal life, working, feeling worthwhile.
However, recently she started developing unusual swellings (once lips, once eyelid, twice feet) and it has happened for several months in a row now around the time of her period when she is taking pain killers for cramps and coincidental with holiday or restaurant meals. She’s been to primary care, her psychiatrist, urgent care, and the ER. No one is certain what is causing it: the Haloperidol, Tylenol or Ibuprofin or Aleve, food allergy or what? Her primary care got all excited and stated emphatically that she had to come off of the Haloperidol. Her psychiatrist lowered the dose by half but said her colleague and herself didn’t think Haloperidol was causing the angio-edema. The ER and urgent care doctors told her to see an allergist, they had no idea what was causing the problem. She has an Allergist appointment in a few weeks, it was hard to get that appointment.
If she has to come off of Haloperidol I worry as no other medicine helped her as much, and all of the others she tried caused side effects. My daughter thinks it is her voices, that they have the power to direct bad energy at her and hurt her.
I am worried and sad, but thankful she has had years on this medicine doing well.
Hopefully it will not be the AP she is on. We have to be so strong to handle this illness. Glad she has had many good years lately, indeed one of the lucky ones. My prayers and hugs to you both.
I’m sorry to hear your daughter has developed these symptoms, @oldladyblue. As if she isn’t going through enough already! My son hasn’t experienced edema on his meds, though he does have tardive dyskinesia with his current and some previous APs. It’s controlled with Benztropine. Good that you were able to get the upcoming appointment with the allergist; I hope they’re able to help and she’s able to stay on Haloperidol.
Thank you @megmeg@irene and @amysfo for your kind and quick replies. You’ve sure helped me to calm down by your caring posts. I am trying not to think about this all the time. We see her psychiatrist again on the 13th, her primary care doctor on the 14th and the allergist on the 28th. I have no idea if the psychiatrist will allow the 1/2 dose shot of Haloperidol again, which is due on the 13th. Sigh. I do know that my daughter could not really navigate this on her own: all the emergency visits while we learned what angio-edema is and that it CAN be life threatening if it affects the tongue or throat. She maybe would never have seen a doctor on her own. She is positive the doctors and allergist won’t find any cause as it is her out-of-body voice spirits that are targeting her with the pain and swelling. Thankfully the swellings have never been in her throat.
