Mycophenolate: Working?

[GingerCatJayne]

Hi all,

I was prescribed mycophenolate for ILD in June(ish). While I initially felt better, I don't feel it is helping any more.

I would like to know if anyone else has experienced this?

Jayne

[Fennella02]

I've just had this conversation with my rheumy. I started on methotrexate which lasted 5 weeks before transferring to my Mycophenolate 5 years ago. According to the literature, this potentially opens up the opportunity for rituximab but there are other immunosuppressants that xan also be tried. My rheumy decided to take my case to the multi disciplinary discussion - not sure exactly why and I haven't heard a result yet so I continue on the myco. Do you have a primary diagnosis that is causing the ILD?

[GingerCatJayne in reply to Fennella02]

Hi Clare,

I don't have a definitive diagnosis, yet. Although, they have suggested it was caused by venlafaxine (anti-depressant) which I was on for about a year. But, when I walk, even if it is for a short time my lips turn blue and I need to sit down and use my Ventolin inhaler (I have asthma). Jayne

[Titchykath]

Hiya I am on mycophenolate, have been for just over a year. I have antisynthetase syndrome pl-7 , this affects my lung, muscles & skin. My last scan has shown the fibrosis hasn’t got worse.So therefore it is working for me. I am also on 2ltr 02 whilst moving.it takes a few months initially to work. It keeps the inflammation at bay. The only downside is upset tummy sometimes and fatigue.🙂

[GingerCatJayne in reply to Titchykath]

Thanks Titchykath. xx

[Wendy_A]

I started this in July too, I felt fine whilst on 2 tablets a day but when it was increased to 3 I had severe side effects, lots of my hair fell out, sickness, headaches and the whole of my body constantly aching so I was dropped back down to 2 tablets where again I felt fine. I’m now back upto 3 tablets a day and this time the side effects are nowhere near as bad. I’ve had a little bit of nausea and a little muscle aching. Eventually I need to be on 4 tablets a day. I was told that my ILD was quite rare so has no studies into it and unfortunately it a case of trial and error. I have idiopathic interstitial pnuemonitis, likely cryptogenic organising pneumonia with bronchilitis, type 1 respiratory failure and o2 24/7 1ltr at rest 2ltr walking. Good luck and hope they continue working for you.

Merry Christmas to you all too, here’s to a healthier 2019 xx

[GingerCatJayne in reply to Wendy_A]

Hi Wendy, I am so sorry to hear about your health problems. I was ventilated in intensive care for a month when I contracted pneumonia and flu back in February. I was on 2L of Oxygen at rest, but, fortunately, I was able to shake it off and continue on room air. I am unable to walk for any length of time due to this condition. I am still on prednisolone which, apparently, contributed to my overall ill-health and hospital stay. I am desperate to get on with my life but, I know I have limitations. Oh well! Have a great and peaceful healthy Christmas. xx

[Wendy_A in reply to GingerCatJayne]

Try and stay strong and positive I definitely think it helps. I’ve been ill for 6 years now and I’ve improved a fair bit during that time my lung capacity has improved from 22% to 35% I know it’s still rubbish but it’s good for me lol. Have a fab Christmas xx

[gilles]

my wife has been on it for about 2 years and this is what saved her life she has interstitial lung disease it doesn't make her lungs better but stops it from getting worse she has 42% capacity now but everybody is different I hope it works for you Gilles

[GingerCatJayne]

Thank you all for replying and I am interested to hear about your experiences. I wish everyone a Happy and healthy Christmas and New Year. Jayne xx