coming off medication

[rodders1941]

hi lv just com e of my medication nintedanib, as the side effects were very bad ,l lost one stone in a month , but were do l go now is the question, can you help with some answers . take care Rod Glover Rodders 1941

[sassy59]

Hi rodders, that’s something you really need to discuss with your doctor. Wishing you well. Xxxx

[rodders1941 in reply to sassy59]

thanks for reply ,the problem is finding the right doctor or specialist, with the right information. take care Rodders1941

[Bkin in reply to rodders1941]

R you not already under a specialist rodders?

If not ask your GP for a referral, if you can Royal Bromptom would be a good choice.

[rodders1941 in reply to Bkin]

Bkin thanks for replying yes lm with a consultant at the churchill hospital in oxford ther very good , only thing is they seem to kick you into the long grass i.e. will see you in 6 8 9 months time .l would rather they give me a rough estimate of how long lv got to live ,then l would know were l stand.

take care Rodders 1941

[Bkin in reply to rodders1941]

I don't think they can predict expiry date and really I don't know if giving an approximation is a good idea. I would say you need to discuss with consultant even by phone that you have stopped your medication and what the other options are. I guess nothing to stop you asking, consequences of not taking any med, I suspect it will shorten expiry date but then I am no medical professional.

[rodders1941 in reply to Bkin]

piryBkin thanks for reply l surpose it depends on who is asking for a expiry date, poping my glogs has no fear for me . take care rodders1941

[Bkin]

I would say discuss with your respiratory consultant to see what other options are available for you.

Best wishes

[Suzie42]

Hi rodders1841, I've been struggling taking Nintedanib. Firstly I took it for 4 weeks having side effects nausea and diarrhoea, but had medicine to help that. After 4 weeks had a blood test and my liver ALT test was raised and was taken off it for 2 weeks. They started me back on a reduced dose 100mg and have to have another blood test in just under 2 wks now. I started having side effects again almost straight away, but with the anti sickness and loperamide tablets am getting along with it. I dont know what my blood tests will show, but if liver is raised again I think they may stop this medication. I dont know how I feel about it all. So few people on this site suffer with IPF and can help with the problems this drug brings and to be honest I dont know whether to try other options, like you with your exercise. I'm fed up thinking about taking the medication and trying to keep 12 hours apart for the meals. Would like your opinion. Take care . Jill

[rodders1941 in reply to Suzie42]

Jill lm in the same boat as you , not enough information on the drug concerning other people who also take it. but l intend to ask until l get answers. take care Rodders1941

[Suzie42 in reply to rodders1941]

I've had a better day today and haven't had any side effects. I managed a cooked breakfast and had fish and chips for late lunch this afternoon. I'm wondering if the worry of having the side effects makes them worse. They do say stress does all sorts to your body. What do you think. Thanks rodders1841 and take care

[rodders1941 in reply to Suzie42]

Suzie thanks for your reply, yes protein is a big factor in our well being. l was feeling sick every time l look at food when l was on the medication ,l lost a stone in one month now lm off the medication lv pulled myself together and have a good breakfast and a good evening dinner, now l can feel my body coming out of it. time for some regular exercise, lm so happy Suzie to hear you are eating well ,lm monitoring my waight as well , it seems we have a on going fight on our hands Suzie but we have each other to help us through it . god bless Rodders 1941

[Suzie42 in reply to rodders1941]

Thanks Rodders1941, I have suffered for the indulgence yesterday....like you sometimes the thought or look of food makes you feel sick. Can I ask you, were you prescribed anti sickness medication. I have found this a life saver, as soon as I feel nauseous I take a pill and after 30 mins it goes away, lasting up to 6 hours. Thank you for your ongoing support it means a great deal.

[rodders1941 in reply to Suzie42]

Suzie yes l was prescribed anti sickness medication but my wife who was a nurse was getting worried about my waight loss, so came off the medication ,lv yet to hear from the nurse who looks after my case, if l do, l then can move from ther. take care Rodders1941

[Suzie42 in reply to rodders1941]

Haven't you got a clinical nurse specialist assigned to you. I have one and I can email or telephone her. I usually email and always get a response same day. I found taking anti sickness enabled me to eat, that's why I was wondering about you. Take care

[rodders1941 in reply to Suzie42]

Suzie yes l have a nurse in charge of my case ,he told me to come off the medication ,so lm waiting for more info from him him ! take care Rodders 1941

[Suzie42 in reply to rodders1941]

Keep me informed of what happens please and take care

[rodders1941 in reply to Suzie42]

will do, god bless Rodders 1941

[rodders1941 in reply to Suzie42]

Suzie yes l will ,lv think its best if l allow the medication to flush out my system lm going to give it a month before l start on the lower dose , and lm trying to get over taking steroids ,so lm going to need a breather. let me know how you go on ,my wife wishers you the best .take care.Rodders 1941

[Suzie42 in reply to rodders1941]

Thank you, I will keep you updated. I haven't been on steroids, so may be they clash with Nintedanib. Best wishes to you and your wife and take care

[Suzie42 in reply to rodders1941]

I've had liver blood test and was normal. So staying on lower dose for the time being. I'm getting used to side effects now. Take care

[rodders1941 in reply to Suzie42]

hi Suzie just discovered your emails again how are you . lm not to bad short of breath but thats only to be expected. hope you have a great christmas Rodders take care

[Dedalus]

Hope you find a suitable alternative soon - sounds like it may be a case of trial and error.

[rodders1941]

Dedalus thanks for your reply , take care Rodders1941