Quote Originally Posted by Jaha View Post
Well I got thru another infusion on 6/29. They gave me IV Solemedral, Tylenol and 780 dose of RTX. They told me that they were just going to give me the one dose at this time and make it an extra strong one. I was so shaky and afterwards, so I've been in hibernation since then. I did get a some coughing, low grade fever, aches and nausea, so took the Benadryl and Tylenol every four hours for about 24hrs. I was suppose to make a follow up appt. with Villa-Forte in two weeks and then I get a message that they scheduled another Tx on Tuesday, I tried to call on Friday and could not get any answer, so cancelled it online, until I talk to someone about this. Meanwhile, the Neuro had ordered a Cervical x-ray and I have a mess to deal with there now, from all the steroid usage over 5 yrs. I am so sick and tired of all the complications of this ugly, crappy, totally unpredictable disease. I had gotten down to 9mg of Preds and had to take it back to ten because of the joint pain, maybe I can try again soon. Just looking for a break somewhere in all this.

Hope you get a break soon from the disease that often just seems to keep on giving us more to deal with. You would think that we would be like the premium travelers on the air lines that get extra red carpet service because of all the business we give them. Too bad we don't get frequent flyer miles or points on a reward card we can cash in. Or at least some prompt personal responses to our questions and needs.