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Originally Posted by JoannaP79
This makes me so angry I could use alot of expletives right now. I have read numerous reports / studies stating that ivig has improved outcomes for some with sjorgens related sfn. Is this a big conspiracy or are some of the neuros stupid? It just has to be the cost and lack of clinical trial data.
I do understand concerns regarding risks but they seem to be far less than some other immune suppressing treatments.
Can you change neurologists?
Feel your pain - literally. My neuro has just sent me away with 6 month check ups but I have been emailing persistently to ask for Ivig based on my own research.
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I have Sjogren's related SFN/PN and receive IVIG. I'm sure it is the cost factor that keeps doctors from using this treatment more often. They are probably 'encouraged' to avoid prescribing IVIG.
You are correct about the risk, but as you say, 'some' other treatments actually carry more serious risks than IVIG.
One of the other reasons I think IVIG is held back from treatment is availability. It is a blood product and therefore subject to shortages. So criteria for prescribing is tough. If they gave it to everyone with even mild cases, then there would not be enough to go around. But the catch 22, is that if they used it for early/mild symptoms, they would probably have excellent results (catching it early).