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Flu shot.

Jasperdina Message
20 Nov 2017, 08:07 PM

Does everyone get a flu shot and were you told by your doctors it is necessary to get one?

rnolan Message
21 Nov 2017, 06:05 AM

Yes flu shot is very important. I ended up in ICU for 12 days with the flu two years ago which triggered another ISCLS attack never again. I have the flue shot pre winter. 


aporzeca Message
22 Nov 2017, 03:50 AM

I am not aware of flu shots ever having caused problems for SCLS patients who are on the recomended treatment with IVIG.  I have had a flu shot every year since I initiated my successful IVIG treatment sequence 8 years ago this week, and it's never been a problem.  However, SCLS patients who are not receiving IVIG are caught between a rock and a hardplace: on the one hand, they don't want to do anything that could trigger an episode of SCLS, like getting a flu shot.  On the other, as illustrated by Ruth's comment, the onset of a flu might conceivably trigger an episode of SCLS.  I purposely didn't get the flu shots before my SCLS was brought under control.  The question posed is whether doctors tell SCLS patients that it is necessary for them to get flu shots.  I don't know the answer, but I cannot imagine any physician telling their SCLS patient that they must expose themselves to an unknown risk by getting a flu shot -- especially if their patient has not been stabilized through the recommended and highly effective therapy with IVIG.

Arielbatt Message
12 Apr 2018, 03:52 PM

Hi nolan, ... in this case, she was hospitalized with an attack due to the flu, she was with IVIG, right?

rnolan Message
13 Apr 2018, 09:18 AM

Hi I am R Nolan and no at the time I contracted the flu I was not having either the flu shot or IVIG. A big lessen learnt. Never again I now receive both. I unfortunately have gone on from ISCLS to smouldering Myeloma and now just broken my pelvis and have been diagnosed with full blown Myeloma which I am receiving chemo therapy and a round of radiation. 

I still continue with IVIG and will be having the flu shot as soon as it becomes available here in NZ. They are making changes to the vaccine to make sure we are covered for all flu that hit you guys over you flu season.


Ruth Nolan 


Arielbatt Message
13 Apr 2018, 04:02 PM

Dear Ruth, I am very ungrateful to hear about myeloma. We read great advances regarding your treatment. I wish you the best of luck, and the greatest strength possible. My question was because I see that almost all of the complications occurred during times when IVIG was not being used. For example the relation of air travel and attacks. Thanks for your reply.

Windows Message
14 Apr 2018, 09:23 AM

Dear Ruth. So sorry to hear of your situation. I do hope you mend from the pelvis soon (how did that happen?)and that your treatment is not too arduous. You are such a positive person! The flu shot is available now in New Plymouth as my husband who has advanced dementia  just had his this week.I would think the most needy get it first and you are one for sure

Nhan Nguyen Message
17 Apr 2018, 03:41 AM

Dear all, your discussions show that you can get flu shot when you are on monthly treatment with IVIG, right? I'm aware of flu-like illness that may lead to a SCLS episode, so I told my son's doctor about my intention to get flu shot for my son in the coming Sep. or Oct. when the new vaccine is available in Vietnam, however, he said that flu shot can only be taken after IVIG infusion for 6 months. It means that no IVIG treatment for 6 consecutive months, then taking flu shot is ok. I'm wondering about this?