RYAN-N.E

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  • RYAN-N.E
    June 13, 2017 at 9:02 pm

    Bryan,

    Thanks for replying. Yes at this point I really need to give IVIG a full trial. I do not have alot of other options and my legs are really getting weaker. I fit the mold to a T symptom wise, diagnostics are less compliant.
    I am going to get with my neuro and ask why he chose a weekly regimen versus a higher loading dose. He is very well written and was the chief of a department at one time.
    The headaches dont scare me like they did, just the fatigue. Wow that knocked me down for several days. Scared me.

    Thanks again
    ryan

    RYAN-N.E
    June 12, 2017 at 3:45 pm

    JK.

    Thank you for your reply.
    I did start with a 5g dose. My understanding was that this was a test dose as I started with home infusion. I had a significant headache during and afterwards. I have been struggling with my health and trying to start a new job, I think the majority of my headaches are stress related. I was then to try 30g weekly. I had such a hard time with the 5g – combined with trying to stay employed – that my Neuro suggested 10g a week. I don’t know whats going on at this point. I am wiped out – I mean wiped out for 3-5 days after a 10g infusion. I have a very high tolerance for pain, have gone years with this pain with no meds, but this fatigue scared me. I am grasping to being an employed father and just scared to lose that grasp.

    RYAN-N.E
    June 8, 2017 at 2:14 pm

    Thanks for the reply. He started with a test dose of 5mg. I had a major headache so he wanted to move carefully which I am glad for. I have had major crippling fatigue since my last 10g infusion on monday. It crept up on me, I felt pretty good the day after and now I am barely functioning and scared to death.
    I find fatigue to be common on these sites but not of this severity and after such a small infusion.

    RYAN-N.E
    June 4, 2017 at 8:21 pm

    Jim,

    Thanks for your reply. I have been reading your posts for months, you are clearly a significant resource for this forum.

    I am concerned both about the side effects and the substance of my diagnosis. I have learned the hard lesson that their are few certains with chronic illnesses of any kind, I just wish someone would tell me with certainty that this is the direction to go in. I can march through with my head down.

    How is switching to SCIG typically regarded by insurance companies? I was originally denied coverage for IVIG until my most recent neuro appealed. This is essentially what I think I paid for with him.

    Does it even seem possible that I could have side effects lasting 4-5 days after a small infusion of 10g?

    I will be having another 10g tomorrow preceded by an IV NSAID. Hopefully it is manageable.