Fourth IVIG Treatment

I had my fourth treatment this past week. Wed, Thurs, Fri. It is Monday and I still have a headache. Now whether it is from the IVIG or some other wonderful thing I have, it is there, can not hardly see. I know I did not take it easy after the treatment that so many tell you to do, but no doctor has ever told me to go home and rest, it is just that you feel so crappy that you do. LOL. This time I felt like I was going to collasp. My legs still do not have the strength in them. I have done a lot, this weekend regardless, pushing it, it is this time of the year, and giving up almost a week a month drives me nuts. But if it helps it is worth it. The first two I had was like a miracle drug, I walked a mile, I did things around the house I have not been able to do, but now the last two are just sort of bla, do  not recognize any difference. I did read that there was a bad batch of IVIG and maybe that was me, I also read that a doctor had told one of his patients that it is like a crap shoot, because you have 1000 people donating their plasma and you never know what you are getting. That makes sense to me, but for 24,000 a shot, I would think I should be running a marathon by now lol. I feel guilty over the cost of this medication, I really, really do. I pray it helps me stop the progression of my autoimmune diseases and sfn.


I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.


Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie