How autoimmune disorders happen: This was posted on... - PMRGCAuk

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How autoimmune disorders happen

PMRpro profile image
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17 Replies

This was posted on the lupus forum a couple of days ago. It explains as a cartoon film how the immune system goes wrong to cause autoimmune disease.

lupusnewstoday.com/social-c...

If you do decide to watch it, remember that this is adapted for lupus patients - for us with PMR and GCA the damage being done is to blood vessels, we do not get damage to other organs such as the kidneys or skin although sometimes there might be the brain aspect of brain fog. Also, there are not yet any autoantibodies that have been identified as being closely enough associated with PMR and GCA to be used for confirmation of that being what you have. They would also offer a handle to be able to develop targeted treatments. But it does explain the immune system going wrong quite well and might be useful to get through to partners and family why you feel so unwell despite being on "pills" - because this is still all going on in the background despite the pred.

The "music" is not my cup of tea - I can only assume that they wanted to make it all sound mysterious and threatening. Irritating would be my description!

PS However - if you look to the right of the download bar under the image, you will see 5 blue vertical bars. Click on that and you can reduce the volume dramatically and at 2 bars I found it wasn't too bad, at one bar they guy was almost whispering and I couldn't hear the plonking and wizzes.

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Slowdown profile image
Slowdown

Potentially very informative but ruined by the overbearingly loud 'music', I gave up around the Dendritic cell as my brain fog simply refused to separate speech from screech. I seem to be extremely sensitive to noise so this may not be true for everyone! Sorry this is so negative, but truthful! Thank you anyway, PMRpro ;-)

PMRpro profile image
PMRproAmbassador in reply to Slowdown

You aren't the only person to say the same. However - if you look to the right of the download bar under the image, you will see 5 blue vertical bars. Click on that and you can reduce the volume dramatically and at 2 bars I found it wasn't too bad, at one bar they guy was almost whispering and I couldn't hear the plonking and wizzes.

It defeats me WHY they think EVERYTHING has to be accompanied!

Slowdown profile image
Slowdown in reply to PMRpro

Much better at 1 bar and treble turned down!! at least I can hear the narration - thanks! Totally agree with you about slapping music onto everything, even the news on some occasions, unnecessary and subliminally manipulative. I suppose the producers believe we are becoming so 'immune' to just pictures we need an extra stimulus... music as steroids...

PMRpro profile image
PMRproAmbassador in reply to Slowdown

My husband has quite severe hearing loss due to chemotherapy. Last year I persuaded him to get top of the range hearing aids but of course, however good they are, they still make everything louder. Our pet hate is these barn-like restaurants with music (I use the word advisedly).

piglette profile image
piglette in reply to PMRpro

The trouble is they also seem to have wooden floors that do not absorb the noise either. It is really annoying when you go somewhere that has good food but a dreadful noise racket. Really off putting.

PMRpro profile image
PMRproAmbassador in reply to piglette

We went to a place in Edinburgh - food was great as our daughter had said but the noisy was horrendous! The ceiling was about 4 stories high - and a stone floor.

We have hard floors in almost all restaurants here but there are always either wooden ceilings/walls or sound absorbing panels on the ceiling in the modern places. Lots of people, lots of chattering - but bearable.

tgca profile image
tgca in reply to PMRpro

My intolerance to noise increase 1000 fold in the evenings and restaurants are clatter, clatter, no sound absorption!

Chihuahua1 profile image
Chihuahua1 in reply to Slowdown

Unfortunately I have to agree. I was unable to hear what the narrator was actually saying as the screeching that was trying to pass as music totally drowned them out. I wish they would add an on/off switch for the music side of things so that we had the choice of whether or not to listen

PMRpro profile image
PMRproAmbassador in reply to Chihuahua1

There is - at the side of the download band are 5 vertical blue lines - you can choose to have 1 to 5 lit up to adjust the volume from a load whisper to unbearable.

Chihuahua1 profile image
Chihuahua1 in reply to PMRpro

Unfortunately it also turns down the voice. I need one that turns off the music while leaving the volume for the voice at the same level

PMRpro profile image
PMRproAmbassador in reply to Chihuahua1

Have you also tried the treble/base balance on your computer? Someone said they found that also made a difference. Her post is a bit further down.

Chihuahua1 profile image
Chihuahua1 in reply to PMRpro

NoI haven't tried that. I shall have to get my son to help with that as I'm not familiar with the new audio card. Thanks for the suggestion

HeronNS profile image
HeronNS

Very interesting, and I was able to block out the discordant music. Must be because I live surrounded by the discord of the city... . :)

violetsnowdrop profile image
violetsnowdrop

I just turned the speaker (headset) volume down!

Although I was aware of what causes auto-immune problems, this film is useful to explain to family & friends;in pictures too!

It brings to mind what a renal specialist told me 22 years ago after removing a cancerous kidney from me-- "Sometimes auto-immune cells become renegade and perceive imaginary threats from healthy cells. There is then a greater chance that this will be replicated at a later date and possibly in a different location, but this is not to say that it is an inevitability."

THINKS Rather like a criminal-- who can simply re-offend, adapt to another type of criminality or become reformed.

jannie21 profile image
jannie21

Re the music -I found that if I turned the blue bars down to one, used my earphones and controlled the sound with my laptop keys it seemed to mute most of the noise and up the speaking. It might be worth a try, best wishes to all x

Admiral06 profile image
Admiral06

PMRpro, Tocilizumab is described by Dasgupta as a humanized anti-IL-6 receptor antibody. This means it binds to receptors on the inflammatory cytokine IL-6, thus preventing the attachment of other natural antibodies --- which activate and expand T-cells and promote B-cells. I'm sure you are familiar with the promise this drug may have for GCA and PMR. In effect, it breaks up the autoimmune response described in the cartoon.

tgca profile image
tgca

Frightful music, bit scary but friendly bloke...amazing how we take our bodies for granted

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