Ivig reactions

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Mon

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Hi everyone,

Has anyone had a bad reaction to ivig. My dad did a treatment in january and did another end of february. Since the february treatment he gas suffered from low blood count and a severe head to toe rash. Treatment has been stopped. So far the rash is not letting up. Anyone heard of this happening?
 

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Unfortunately, these are common side effects of IVIG. If the anemia is better and the rash is not letting up, I would expect him to be receiving perhaps a steroid ointment or infusions? The best treatment depends somewhat on the type of rash.

There are ways to reduce the risks of IVIG side effects, such as spreading out the dose, that could be considered if he is able to resume the IVIG at some point.
 

Mon

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Thanks for your reply. He was given predisone by a gp. The neurologist would not comment on the rash or say where it came from. The rash continues to spread. No steriods topical or taken by mouth have helped. We are caught in between neurologist, als clinic- who recommending the ivig before dx is given. Also gp thxfully caught low blood count, not the neuro's. We barely hear a word from them. Its looking like the pma- frail arm and im disappointed for such a rare disease they are not actively doing more. Sure there not be more to give that can help..at least monitor him. Patients in the als spectrum are rare somewhat and deserve attention of the medical community. Sorry for the rant.
I guess we just have to let the ivig come out of system. I hope it doesnt make the MND worse or progress faster.
 

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If the rash is worsening despite oral and topical pred, I would certainly ask about IV infusions. Even the GP should be able to order that.

If the consensus is that the IVIG was not working, I would think about it in terms of the flail arm subtype of ALS, if that lines up with his issues. PMA, a controversial entity, is becoming synonymous with lower motor neuron-dominant ALS, and in most countries "ALS" may trigger more understanding and benefits.
 

Mon

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I actually have never heard of a IV infusion. The January ivig and Feb ivig were administered and no improvement. The neuro at the ALS clinic wanted 3months of ivig in order to rule out MMN. I think the chances of MMN are slim, the neuro at Sunnybrook even stated as such. Unfortunately, we are looking at a diagnosis of ALS( LMN dominant at the present time, aka frail arm, bi brachial) I do know the neuro called it " slow progressing variant of" ALS. I do notice on this forum alot of back and forth about variations of the disease. In Canada, no matter the variation or where it may fall under the ALS spectrum, the diagnosis is ALS. I agree with you, It is best this way, in order to have it recognized for insurance and for help that is available. I will look into IV infusion, this is helpful. Thank you.
 

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Not sure what I meant was clear-- the steroids are administered by IV if the other ways don't work.

Yes, the flail arm variant of ALS has better survival time on average than most other types.
 

Mon

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Thanks for clarifying. I understand what you mean now. I actually thought you meant fluid/vitamin infusion. No a steriod infusion has not be mentioned as an option. The dermotologist thinks it will take a few months to clear. I will follow up and mention. Im not sure of survival time overall. We are at 2yrs since onset and it remains in arms. Thanks again the info. Very helpful.
 

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The median [half more, half less] survival time for flail arm is about 5 years according to the best evidence available. The failed IVIG trial should not affect this.
 
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