Myositis UK

Can I get IVIG?

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 😢

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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.

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

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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.

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

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I start my course tomorrow :)

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