IVIG Anyone?

[ClareR12345]

Hello,

Has anyone had any success with ivig? I have polymyositis and was just in hospital for around a week for respiratory failure type 2, and was given 3 x 500ml of steroids, then 3 days of ivig. My oxygen was down to 70% sometimes, but mostly in the 80s. My lung function s not good, from 100% in January, to 55% now. My sister just died a few months ago, she had scleroderma/ polymyositis. The disease got her bowels, and she died of septic shock, very painful and over 2 days with multiple organ failure. I am scared! I now have a nippy breathing machine I have to use every night and supposed to use some during the day. I hate that blasted machine and all I want to do is scream and run far far away. I know I have to love it and let it work, and I will but I still. I have a dropped head, swallowing problems, I'm house bound, I can barely walk in my house, severe anxiety. I am now on pred. 15mg (having come down) and mmf, (mycophenolate), then a bunch of other medicines to deal with the side effects.

[Jo-Goode Administrator]

Hello Clare,

I'm so sorry to hear about your sister. My condolences to you. I'm sure you are aware how rare it is to have siblings with Myositis. You must be finding it so difficult, not only to loose your sister but your support and understanding for Polymyositis.

I've had Dermatomyositis for nearly 25 years, diagnosed at 25 in heart and kidney failure. After treatment over 4 1/2 years I went on to have 13 years off treatment for Myositis. But remained on medication for RA and pain.

Relapsed suddenly a few years ago with heart symptoms again, but responded well to 5 days IVIG. It took two years of yo yo symptoms to find a good combination of treatment, Mycophenolate, Tacrolimus & IVIG and I then had 2 1/2 years of being stable and functioning as well as can be expected, with some permanent muscle weakness and damaged joints!

My main treatment now is IVIG for Dermatomyositis every 8 weeks and it has kept me fairly stable for several years, as my mainstay treatment. The other treatments of Mycophenolate & Tacrolimus had no side effects and helped with mainly with fatigue , but this was stopped in May 2016 when I developed pneumonia, that required 150 IV antibiotics between May 2016 and New Year Day 2017. I had numinous chest infections during 2017 and my lung function was rubbish. Finally after obtaining a referral via my GP to Papworth Hospital in 2018 I got a diagnosis of the lung condition Bronchiectasis, which leaves me at high risk of chest infections (the reason for not resuming immune suppression), but with treatments and management my lungs have improved.

You will probably find if you join the Myositis UK Forum on facebook you get a better response, as it's a larger and more active group.

Kind regards,

Jo

[hopegalore20]

Hello ClareR12345, sorry to hear of the passing of your Sister. You have a lot to deal with. Hopefully things are getting better for you!

Re: IVIG, I underwent this Infusion for a full week in hospital to help me cope with my Dermatomyositis. I was also on 60mg of Prednisone with 2g of Mycophenolate Mofetil, Adcal-D3, Antenolol, Fexofenadone. Omeprazole and also various skin and Scalp steriod creams/lotions. The IVIG did help slightly. However, I then underwent Truxima Infusions which I found more beneficial, both to my skin and muscles.

I hope the IVIG treatment is working well for you.

Take Care & Good Luck x