Can I get IVIG?: Due to normal CK levels I’m not... - Myositis UK

Myositis UK

1,311 members532 posts

Can I get IVIG?

MissFG profile image
5 Replies

Due to normal CK levels I’m not on steroids and don’t want to go on them either.

But consultants are saying there’s no obvious signs of muscle weakness despite what I say.

I’ve noticed a weird shape around my muscle bicep on my left arm this past 4 weeks and can’t carry anything. I had my first physio appt yesterday and he’s confirmed I have muscle weakness and wastage in specific muscles and the changes in my left arm is wastage of my bicep. I’m also awaiting another lung function test as my breathing is difficult and I feel faint if I do anything as simple as walking.

It’s worrying me that Azathioprine will take months to help. Can I request IVIG as a quick fix to help me now? I know it’s expensive but hear it’s very effective short term and used a lot in the USA. Or are they likely just to offer me steroids which I don’t want?

What if I don’t have Polymyositis and I have IBM? I won’t find out will I until no immune suppressants work and then I don’t want to imagine the state I’ll be in and the potential muscle wastage 😢

Written by
MissFG profile image
MissFG
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Jo-Goode profile image
Jo-GoodeAdministrator

Because of the cost of £7,000 - £10,000 you have to meet certain criteria on the NHS, either in a life threatening situation, breathing difficulties or have gone through all other treatments options with little effect.

MissFG profile image
MissFG in reply toJo-Goode

Thought that might the case. So there’s very little options open to us.

in reply toMissFG

There are loads of options open to you. The standard treatment is steroids followed by another drug like methotrexate or Azathioprine. IVIG is not the first line treatment in America either. There are world wide protocols fir treating this illness and good RHeumatologists follow them. If there is a clinical need fir you to have IVIG first then you will receive it, clinical need is not usually because you don't want to take the steroids snd in the USA your insurance company would have to approve the drug, in the UK this is your Rheumstologists decision based on clinical need only and nothing else including cost. Six years ago I was so ill with anti jo Polymyositis I did not believe I i would make it. I am grateful fir the steroids and the Asthioprine that saved my life and returned me to a normal life. I would have taken anything at that point, I just wanted to live.

sickofpm profile image
sickofpm in reply toJo-Goode

just been told I am to receive this. fingers crossed. just waiting now.

sickofpm profile image
sickofpm

I start my course tomorrow :)

Not what you're looking for?

You may also like...

I think I have Dermatomyositis??

Hi all it’s my first time posting on myositis page. My story like so many others is very long so...
Benne09 profile image

Hello! Advice on who to see

Hi! I haven’t been diagnosed as really long waiting list to see someone. But have similar symptoms...

Hi, new here, and would like some help if you could please? :)

Hi Guy’s.. New here, but think I may be getting closer to my actual problem as time goes by. I’ve...
JDB1964 profile image

Hey...not sure if I belong here but...!

So following a bout of pneumonia, for 5 years I've had pains, low mood, fatigue and IBS. Dr pushed...
Boggle99 profile image

How to get diagnosed

Hi everyone, I'm new to this forum. I would appreciate any advice on getting...
Dougie profile image

Moderation team

Jo-Goode profile image
Jo-GoodeAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.