Thanks again for sharing your experience with pp. Just to let you know that we had quick apt with the neuro today. This was as a result of my husband calling to share with him the proplems he is now haveing: Falling daily now, gets these violent tremors in legs and will go down unless he can get to a chair iin time. Neck and upper back hurting just from physical working with his arms like in the shower to hold on while showering. He has to rest immediately upon leaving the shower. Very fatigued and so on .
I was hoping he would still consider doing ivig in less than 6 weeks to see if that would show some improvement. Doc said that he called 3 doctors after talking to my worried daughter who he said was condisending to him. Like he did not know what he was doing. I also feel that way but he did not acknowledge.
Bottom line is that Bill is to get pp next week starting on Thrusday for 5 days.
He can start in hospital and then go in as outpatient the rest of the 5 days. I answered in hospital all 5 days as we have an hour to get there and if something goes wrong or he gets really sick I do not want to have to take him in traveling that far. When he got sepsis I did not go to the docs hospital as I did not know how bad he was and would I make it on time.
Now with your response I see why it was even mentioned. I did not know he might need to rest inbetween without treatment one day. I would think that if he needs a break they would let him go and start again. Any comment.
Truthfully I am very nervous about this . I know it is more dangerous than ivig. He claims no one is farther from him that 20 steps and monitored all the time even a urologist testing his kidneys. He also mentioned we might have to go with one of the cancer drugs along with this. Now we are talking cellcept or Rituxin or another one which also starts with a C. I questioned Rituxin and how he could get it and he said do not worry I can get it.
I am really scared.
Iread with interest your story. My husband Bill has been On prednisone and imuran and got sepsis, now he is on ivig. Has had two sessions of it 6 weeks apart with no improvement.The doc refused to do closer together so Bill is going to see if he will do plasma pheresis as doc suggested it if after 3 treatments of ivig. He has only had two. We also are going to Cleveland Clinic in August (26th) but my fear is that his nerves are being attached in the meantime/
We call Cleveland 2 times a week as we are on a priority list for any opening sooner. I cannot help you right now but I find this very comforting. Suprised that your doc started this so soon however sounds like it is working. Yes my husband did get dehyrated with sepsis and white blood count way down and blood pressure also down but all ok now.
I would like to know what state you live in and who is your doctor. Can you reply to this.