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Side effects of Yimmugo
I just discovered yesterday, quite by accident that some time ago my neurologist changed all of her Octagam patients to Yimmugo. I have yet to find the date of the change. I was not asked nor would I have given permission without researching the drug thoroughly.
This week all patients were switched back to Octagam because of side effects. I am suspicious that my sudden increase in terrible side effects about 90 days ago was a result of this switch in drugs. Yimmugo is fairly new (about 2 years on the market) and has a "rare" side effect that if you get it you are on a non-reversible path to death with in a year. My CIDP will not kill me so I am not interested in any drug that has that "rare" side effect. It does not tell you how rare it is nor can I find the statistics on the trials on this drug.
I am hoping that the short time I was on it that this "rare" side effect has not gotten into my system.
Has anyone been on this drug? And does anyone know if it legal to change an IVIG drug without the patient's permission?
I am looking for a new neurologist and infusion center. She owns the infusion center. And I so like the nurses that do the infusions they are the best. Until this stunt I liked this Doctor but this is awful.
Thank you,
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@busylady10 Did you ask the doctor why she made the switch?
Busylady10, Before you lose these likeable nurses make sure that it wasn't a decision made by your insurance company. A doctor isn't required to inform a patient if they are switched to a generic, sometimes they don't even know. But this drug isn't a generic, and I suspect is more expensive than your customary IVIG drug.
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1 ReactionGood morning
I work with the Mayo Clinic pharmacy because I have major drug reactions. And not the normal
I would recommend you go to one pharmacy only and get to know the pharmacist and talk to them about your allergies. A lot of times patients are switched from my namebrand to a generic because it is cheaper and it may not be the doctor that does it. It is the insurance company is saying we go with the cheap cheaper one. And it could be a generic, but each pill has its own set of ingredients and inactive ingredients.
The Clinic knows my allergies and so they check every prescription for interactions that I could have.
I would recommend one pharmacy only they are your best advocate
Wish you the best
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1 Reaction@sueinmn
I found out from the infusion nurses. They didn’t know why to the yimmugo but she switched back due to everyone getting side effects. Frankly I don’t care why she switched the fact there was no disclosure or choice for me is enough to move on.
@gently
I have a great Medicare supplement. The one that was too good and they discontinued it some years back. An entire IVIG group of patients would not all have had insurance rejection of the same drug at the same time. A friend in the medical profession suggested Yimmugo offered her a great deal if she switched in bulk. Said it’s done a lot. Now I know what I want in my next folder with a new Dr.
@minnesota10
The dr orders this IVIG drug direct to her infusion center. Patients don’t have anything to do with interaction on this one with a pharmacy. I am VERY reactive and the Dr knows this and I research every new drug that’s ever suggested. I lost a brother at a young age before computers were involved from too many drs prescribing for him after a car accident from Drug interaction. I’m very cautious.
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3 Reactions@busylady10, if it isn't illegal, it should be.
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1 Reaction@busylady10 I absolutely agree - no one should be switched to a different drug without their knowledge.
Doctors do not operate autonomously - they have oversight by some organization. You said she owns the infusion center, but if I was in your shoes, I would report her to a higher authority - even the state medical society if necessary, at least to the organization/specialty who oversees her.
@sueinmn
I was already headed toward making an appointment in So Calif at a major medical center that I am familiar with for a second opinion. I am upping that time table and have decided, if I can be accepted as a patient I will do that, as it is generally a quarterly visit for me and my son lives 15 minutes from the center. I will combine that with a local infusion center or home infusion. I have very good medicare/AARP supplement insurance so it gives me (at a very high price but turning out in my old age to be worth every penny of it) the flexibility to seek medical care in more directions.
The neuro is a D.O. and I am planning, when I can be "un-hooked" from her practice and have all my records from her, to speak with the State Board of Osteopathic Medicine. I found out today the switch was made May 15th and I look back at my records and activities I was in such a horrible state for weeks during that period of time. I was trying to hide my condition because I was so frightened and couldn't exactly explain what was going on. I did see the Dr. during that period of time for testing and 3 appointments for side effects and trying to figure out what was going on. There was plenty of opportunity for her to tell me she had switched my medication!
These past few days I have been haunted by the thought of having been given the fatal disease similar to Alzheimers disease that kills in less than a year. I wish I knew more about that and could be tested or ??. It being rare does not put me at ease. I cannot find any statistics on it at all.
Sorry to get so long winded. Thank you for your comments and I am following up on this for certain this should not happen to anyone else let alone an entire group of people. Guinea pigs comes to mind.
busylady10
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