Brother in hospital with pulmonary fibrosis

[nomoreibsc]

My younger brother is in hospital. His symptoms got really bad after Christmas. Struggling to breathe, walk and eat properly. Lost so much weight. Has an IV drip for nutrients. He was on mycophenolate but the side effects were intolerable. I'm so worried. I think he has been protecting me re the severity of his condition. Google has been my friend but the information was not very positive. Decided to speak to his consultant and now feeling devastated. Any insight would be helpful. Just want to support him and be there for him.

[Alberta56]

So sorry I can't give you any helpful info. I can only send very good wishes to you and your brother. I'm sure he values your love and support. xxx

[nomoreibsc in reply to Alberta56]

Thank you so much. Your kind words mean so much. 🤗🌹

[CDPO16]

I'm sorry for your situation and afraid that I can't help but I do think that it would be worth ringing the asthma+lung nurses on their helpline number Mon-Friday. They are very good and knowledgeable.The number is listed on their home page.

[nomoreibsc in reply to CDPO16]

Thank you so much. I've been in touch and they were helpful and reassuring. I know he is in the best place re treatment. Hard seeing him so poorly. x

[CDPO16 in reply to nomoreibsc]

Yes it is especially when one feels so helpless. Just being there for him will mean far more than you perhaps realise. Best wishes to you both.

[nomoreibsc in reply to CDPO16]

Thank you so much xxx

[Piperava]

Get intouch with Pulmonary Fibrosis Trust or Action for Pulmonary Fibrosis who will be really helpful. My late husband had Idiopathic Pulmonary Fibrosis, Idiopathic meaning they don't know the cause. He was also on Mycophenalate but he didn't really have any side effects with it. Is your brother on oxygen? Just be there for him and give him all the love and support you can. My thoughts are with you both.

[nomoreibsc in reply to Piperava]

Thank you so much for your reply. Also for the support organisations. That will be so helpful. I will be contacting them. My brother isn't on oxygen yet but his doctor said they will be giving him oxygen to use at home. Really sorry to hear about your husband. Must have been a very difficult time. Sending you much love. xx

[Canabeans]

I have a friend who gas had this condition for over 10 years , hes been very poorly many times but always managed to pull through if your brother has a positive mind set this will help, sending big hugs and hope hes going to be ok xx

[nomoreibsc in reply to Canabeans]

Your message means the world to me in terms of hope and expectations. Thank you so much. Luckily he is very positive and I'm making sure he stays in that mindset. xx

[NikkiDavies35]

I am very sorry to hear that your brother is struggling on Mychophenalate Motefil. I have been on this drug for 4 years due to having interstitial lung and connective tissue diseases and I must admit I have had a few up and downs on it but overall these have mainly settled down now to a copeable Ievel .I do however always have to take the original version of this drug as I did have more nasty side effects from the generic versions that I was sometimes given my local pharmacy as the coating on some of the generic tablets disagreed with me badly. This change though has definitely helped me tolerate it much better. I am also on 24/7 oxygen and prednisolone and a lot of other medications .I have found that my great rheumatologists and also my rheumatology nurse helpline are a great source of information and support . I am also lucky to have a great respiratory consultant .I myself personally would probably speak to rheumatology first for any advice as they are wonderful and they have so much knowledge and experience with this drug. Sorry I am not more helpful and I hope that your brother recovers very quickly. Thinking of you x

[nomoreibsc in reply to NikkiDavies35]

Thank you so much. Your response has been extremely helpful to me and my brother. Given me alot of insight. Really grateful. I will check to make sure he stays on the original brand rather than the generic brand. I think that is the issue as the hospital has given him the original brand and he is definitely having less side effects. I will pass on your advice to him. Thank you. 🤗 They started to give him oxygen therapy last night and he will continue when he comes home. He has had a procedure to clear is lung of air to help it heal and reinflate. I'm not sure why he came off the steroids. He is waiting to speak to Rheumatology, hopefully soon. He is also with the respiratory team. Things seem less worrying since they started such comprehensive treatment. He is keeping positive which I am very grateful for. So sorry you are going through this too. Please take good care of yourself xx

[NikkiDavies35 in reply to nomoreibsc]

😘😘

[craftyone]

I am sorry to hear this. I have been on mycophenolate for 5 years now and recently the dose was doubled. I haven't suffered any side effects other than weight loss, i have lost 5 stone which has been good to say that I am also on steroids and oxygen 24/7. I have ILD which is different to your brother. I hope you can help him through this.

[nomoreibsc in reply to craftyone]

Bless you. Thank you for replying. Really appreciate reading about your experience. It's very helpful. 🤗 He too has lost 5 stone so maybe that's a side effect of the mycophenolate?🤔...So sorry to read you have ILD. Thinking of you xx

[Patk1]

Thinking of u + hope yr brother picks up x

[nomoreibsc]

Bless you, thank you so much. He has started a range of treatment so feeling much more hopeful. Also his respiratory team seem more optimistic than his sarcadosis doctor so I'm very grateful. xx