Nintedanib

[rodders1941]

hi lv just started on Nintedanib and l would like to know how long

it is before it take effects, l have idiopathic pulmonary fibrosis. take care

Rodders

[Hidden]

Hi Rodders, I thought I would reply to you as no one else has. I can't really advise on the medicine as I am not familiar with it.

I would say though that if you have only just started taking it I would give it 2-3 weeks and if you are finding no improvement or worsening of symptoms, do contact your doctor again for further advice.

Hope you find breathing becoming easier for you very soon.

Best wishes

[rodders1941 in reply to Hidden]

hi thanks for reply ,as soon as l started taking my medication l felt better, must be the placebo effect , but we will see. after 14 months of being shunted from pillar to post by the hospital in Aylesbury ,l ask to be sent to the Churchill hospital in Oxford which l cannot praise enough. take care Rodders

[Hidden in reply to rodders1941]

So glad you are feeling better on the drug and hopfully will continue to do so.

Great to see Bee61 has responded to you

[rodders1941 in reply to Hidden]

Bkin thanks for reply . take care Rodders

[rodders1941 in reply to Hidden]

bkin hi lm now on 8mg a day but l have a long way to go before l reach 5 mg a day hope my body behaves its self . take care Rodders 1941

[Hidden]

PS - did you see Related posts top right?

[Bee61]

Hi. I've been on nintedanib for nearly a year now. The drug isn't expected to improve things as scarring can't be reversed but it is hoped it will stop or slow down progression. I did feel better straight away but I am also taking steroids, which my consultant said accounted for my improved breathing tests. Think the only way you'll be able to tell if it is working is when you next get assessed by your consultant & it may take several assessments before they can tell if it is achieving the desired effect. As for side-effects, I was nauseous straight away, but taking the drug with food really helps - ie in the middle of a meal. I've found some food triggers nausea - especially high-fat food- so I try to avoid those as much as possible & eat healthily - lots of fish, fruit and vegetables. I've also found green mint tea really helps if I do get nauseous. Hope this helps

[rodders1941 in reply to Bee61]

hi Bee, thank you for your reply, yes l had the same results almost as soon as l started taking my medication , also the swelling of my hands went down , but its early days so we will see ! the specialist recommends l get down to 5mg of steroids which i hope l can manage. but l have high hopes , wish me luck Bee

god bless Rodders

[rodders1941 in reply to Bee61]

Bee hi , hope you are ok , can you help me, lv bee trying to order a non alcoholic beer from the super market, all to no avail i.e. sold out every time l try. can l drink one small bottle of ordinary beer a day with no effects when lm taking Ninedemib. take care Rodders

[HungryHufflepuff in reply to rodders1941]

What supermarket do you shop at? Becks Blue is a non alcoholic beer, though Adnams also do Ghost Ship but beware there’s also an alcoholic version. There are probably other non alcoholic beers too. They should be able to stock some for you.

[rodders1941 in reply to HungryHufflepuff]

hi thanks for reply every time l ordered they were out of stock , but l think l will be ok with one small ordinary beer . cheers take care Rodders

[Bee61 in reply to rodders1941]

I've been told that drinking alcohol in moderation is OK. I drink only at weekends but a couple of glasses of wine seems to be OK so I'm sure a beer will be fine too. If you're worried could you check with your specialist nurse?

I'm well at the moment thanks & hoping to meet up with family for the first time in months next week. Hope you're well too

[rodders1941 in reply to Bee61]

Bee thanks for reply yes l think l will ok with just one beer a day ,every time l ordered non alkalide beer they were out of stock, lm now on 7 mgs of steroids ,starting to feel a little nervous about ending up on 5 mgs,

hmmm we shell see ! take care Rodders

[Bee61]

Best of luck rodders! Hope you're keeping well. I'm on 10mg steroids & was hoping to reduce gradually - but my July consultation has been postponed to December. I'm feeling well & able to exercise better than last year so don't want to make a fuss, but slightly concerned about the lack of monitoring at the moment

[rodders1941 in reply to Bee61]

Bee thanks for reply, yes l know what you mean about seeing a specialist , they,ve given me a lung specialist nurse l can contact if lm not well or feeling concerned about my condition , and hes very good . l think the Rolls Royce of

all medication is exercise. take care Rodders

[rodders1941 in reply to Bee61]

bee hi, lm now on 8 mg of steroids , lm a little frightened if my body will have adverse effects, we shell see fingers crossed as l still have a long way to go to reach 5 mg a day, take care Rodders

[ding_dong_bell]

I asked my doc for this drug and for some obscure reason he would not prescribe it to me. I have IPF which was diagnosed 2 and half years ago, so that is reason I never replied when 1st requested, sorry. I do of course wish you well taking it. I am now reluctant to take it as all it does is slow down the progression of this terrible disease. Hence ! If I don`t take it, and live another 2 years, for example, how do I know how long I would of lived if had taken it ? Also if I do take it and manage 2 years would I have died one year before I did ? Well it`s impossible to answer either question. Think about it. What though has helped me is excessive exercise, to the point where my 02 levels drop below 90. Since I started exercise my lung volume has increased 105% and my blood oxygen levels at rest is usually 97/98 %.

I am 74, male, underweight, on purpose, and do find exercise hard, but I intend to carry on this regime untill I find I cannot any longer. Hope my first words on this site are useful, and I wish all who suffer from IPF all the very best of luck.

[rodders1941 in reply to ding_dong_bell]

Hi ding dong lv just looked at you email again ,l found out you have to dig your heels with these consultants ,if you think you need the medication then by rights if you have paid in to to NHS over a number of years you are entitled to a fair hearing. l wish luck, god bless. Rodders

[ding_dong_bell]

Thanks Rodders but all seems on hold since flu pandemic. I am at the stage where I am now not bothered really as there is no cure and will plod along as I am for as long as I can. Cycling and taking dog for walks is, I am sure sort of helping as at least I do not need oxygen after over 2 and half years since being diagnosed with IPF . Only thing that does bother me is the extreme fatigue/ tiredness I am suffering from, ah well, it could be worse. You take care and best wishes.

[rodders1941 in reply to ding_dong_bell]

Ding dong thanks for the reply, yes l do the same, to me the rolls royce of all medication is exercise and bags of it . but l do feel a lot of it is keeping on the right track ,to have ones motivation to keep going. About the medication for our condition once again if you feel in the future you would like to take it on, go for it! take care Rodders

[rodders1941 in reply to ding_dong_bell]

hi l think l lost your last reply in the ether! can you post it again . take care Rodders

[ding_dong_bell]

I think !!! ha, that I said I wasn`t bothering to see docs etc and just going to plod along with this IPF , keep exercising and walking and digging garden , and see someone when I cannot do anything. Also that this extreme fatigue I believe is the worse symptom of all. It is a cruel disease, as for as long as 2/ 3 days you can feel great, then wham !! Back to not having any energy to even eat, thank you God from me and all who suffer from IPF , and suffer it`s idiosyncracies, what a tease you are.

[rodders1941 in reply to ding_dong_bell]

Hang on in ther ding dong. take care rodders

[Suzie42 in reply to ding_dong_bell]

I've been looking at your communications with rodders and am wondering how you are doing. I've been on Nintedanib since end if July and have been having trouble with it, side effects and high liver levels, they have now put me on a lower dose but still have side effects. You say you are very active and are under weight, I'm over weight and not active enough. I'm having trouble mentally in not knowing what to do. Trying to get fit and eating well when you feel rough from tablets etc. On this forum people with IPF dont seem to talk about the issues we face much. I really want to talk to people who are in the same boat. I would like to know your thoughts ....

[rodders1941 in reply to Suzie42]

Suzie hi l know just how you feel , lm now thinking should l go back on a lesser dose of Nintedanib , as you have found out you still had side effects,if this is the best the company can do for the money the NHS pays for this drug l think they should have a rethink ! keep asking questions Suzie we the customers are paying and have paid for the N H S . god bless and take care Rodders 1941

[ding_dong_bell in reply to Suzie42]

Hi Suzie42, so sorry for late reply, as I haven`t been too well. I didn`t bother to go back as read too many bad reviews regarding Nintedab , or whatever . I think, as previously stated that it is a cruel disease, one day you can feel fine and dandy, next you have no energy to even make the bed or do a bit vacuuming. I have been in the latter phase for 2/3 days. Then today I managed to dig a ruddy big hole in the front lawn, and plant out a 7 feet high Rowan tree which has been in its pot too long. Sat down after for a wee while , took 3 codeine, and now I am fine. Other days even the slightest exertion does me in physically for up to 3 days. I manage to keep a low-ish weight as I do not eat much as I find eating a decent sized meal also does me in. I now do not exercise as much as I`d like, in fact I only play daft games with the dog, at 45kg she is a handful, hence I get some.

I was horrified to see my weight had crept up to 10 stone a couple of weeks back, now down to 9stone 7lbs again. Mentally it is a challenge of fighting bad dog moods and slight depression, I can understand what you mean and feel for you young lady. I dare not tell doctor as codeine is not prescribed for IPF but only pain. It is a massive help I find, helps breathing a great deal as seems to relax chest and lungs, although one needs to take care not to over do things and stick to 8 a day max ! Anyway I hope you feel bit better now , and sorry if my reply is not what you wanted, take care, ding dong

[Suzie42 in reply to ding_dong_bell]

Thanks for replying to me ding dong bell. This forum can be confusing the way it works. I have just read your first post (Hi Bob etc) it made me laugh I must say. I cannot renember how many times you said Im not Bob, hilarious.

I'm so pleased to hear you are feeling a bit better today. I've had little or no energy for a few days, but when i set my mind to something, like walking 4 miles on Monday it makes me feel better for a while mentally, but physically exhausted.

I have to have blood tests on Tuesday to see if I can stay on the medication. I understood if your lung capacity is under 80% you are eligible for the drug. I was 79%.

I have been taking codeine at night for hip pain as im now not allowed ibuprufen anymore, but was worried about addiction to it. I cannot take it during the day as it sends me to sleep!

I loved being called young lady, not been called that in many years. Take care young man 😃

Ps love your dog

[ding_dong_bell in reply to Suzie42]

Ha! I did get somewhat confused I must admit, it is actually thee very 1st forum I have ever been in in all my years using the net. I had to pluck up courage to do that as I am rather quiet/shy at times yet my daughter says " you, shy dad, you are joking" so there you are. As I have been diagnosed as having IPF, some 3 years ago, I have to believe it as I had a couple of CAT scans, which showed my lungs in a UPF or UPI pattern, cannot remember. The big but is; I have no clubbing at all in my fingers, and using the 3 finger gizmos for doing blood oxygen levels I bought 3 , 3 years ago of different makes. Well, my Ox levels are around 97/98 % when I have been resting for a while. Have dropped to 91/90 % after doing something that uses energy. The consultant told me NOTHING regards this disease, I found most out on the net. I had to walk up a very steep hill one day, can`t escape hills in Durham where I live, felt dizzy and eyes were "strange" took a reading and all were around 87 %. Having only just read about Ox levels I stopped for 5 and they climbed up, so got up hill stop-start way.

79% you say, that seems extra low, I bet you felt awful poor thing, so be it if you have to rest. Can`t you get to the edge of a wood in Spring/ Summer as oxygen concentration in the air is much higher, I do that as we are surrounded by woodland, also have trees in garden, a huge Bay tree near back door I sit next to at times, being evergreen it`s ideal. I wouldn`t worry regarding addiction, especially if it makes you feel better, daytime, well you will get used to them as I take 8 from am to pm and am usually ok, if indeed they help your breathing it will be worth it, remember though, I am NOT a doctor and only going by my use of the drug. I would be lost without Esther, my dog, she is super company, and very loyal. You take care, once again, young lady, and have faith in yourself.

[Suzie42 in reply to ding_dong_bell]

Have you had yearly lung function tests to find out your lung capacity? I only had 1 in March this year. I am same as you my ct scan saw UIP pattern, like honeycomb. I have no finger clubbing. I feel tired all the time but when I can get motivated to do something I do it. In March the consultant said I had been sitting about and not exercising enough and my lungs need reconditioning, he said it will improve my breathing, so I started walking in the orchards behind where we live and over the weeks and months my breathing improved. I couldnt walk 50yds without stopping now I can go 1/4 of a mile (flat only) before I get out of breath. He certainly was right. I judge how well I'm doing by climbing the stairs, most days I can get all the way up without stopping and panting.

I'm hoping these side effects from the Nintendinib starting easing soon. I will stop worrying re codeine. Take care sand look forward to catching up again soon young man.

[rodders1941 in reply to Suzie42]

Suzie thanks for replying yes exercise is the big medication ,but it gets very hard as you get older ,but thats no cop out . l would like to know in future if the side effects of the Nintendinib wears off with you ,as my body is getting back to normal now that lm off it . take care god bless Rodders 1941

[Suzie42 in reply to rodders1941]

Yes Rodders, I will keep you updated. Thank you. Take care

[ding_dong_bell in reply to Suzie42]

Hah , this "young man" is is coming up to 75 yrs old. I have had lung function test, which was 1.5 litre but the next app he was pleased as this had risen by 105%. Never seen him since then. I have always been able to walk a decent distance, slowly of course but if I put my mind and determination into it I could do about a mile + some. It is this extreme fatigue that lays me low, it is dreadful as to how tired doing small , quick actions are worse than steady away, so to speak. If I race the dog for her toy and throw it, about 3 yards, I am worn out, yet walking slow-ish is ok. The main thing is, you are improving, so keep at it and who knows. I have been out on some hard bicycle rides, which I find is better than walking, but since gyms were closed my bike has been purloined by my daughter, goodnight Vienna to that bike . I love swimming but tbh I am that skinny I would be embarrassed to go now. Motivation is thee key word I reckon, so keep going Suzie and all the very best of health young lady, take care

[Suzie42 in reply to ding_dong_bell]

Well, this young lady is approaching 68 and a bit overweight. I've started to loose weight now mainly because I start to eat and then dont fancy the food and leave it (terrible waste). I still love to eat chocolate, but as I'm diabetic I shouldn't.....at the moment who cares.

The last time I rode a bike was on Sark 35 years ago and I couldnt sit down for a week!!! Never again. Last week I managed 5 miles walking mainly on the flat, so was pleased with that. Going up hill is the killer.

If you can get to go swimming do, who cares what you look like if it does you good. Although saying that I only like swimming when we go to the Greek Islands, I prefer sea to pools. I'm missing my workout there this year. Also the salt water keeps me afloat, although I expect it wouldn't for you 🤣. I have built in buoyancy!

I hope you keep well and look after yourself. Best wishes young man.

[ding_dong_bell in reply to Suzie42]

I eat quite a lot when I get started, then just pick. I`m addicted to Monty Bojangles chocolates, seem as if 200 cals in each sweet but I stuff them down and don`t gain weight, my daughter gets annoyed as she gains weight looking at chocs, she cycles lots, about 25 mile a day average, on what was my bike. Five miles is very good for you, so try 6 next time mm.

Nope, resoundingly, no ! I`d sooner swim in the river Wear, and used to years ago. I havn`t been abroad since I was 16 yrs old. Bavaria, Switzerland , Germany, great time what I remember of it, bit of a Xenophobe perhaps but do not mind them at all as long as I`m in England with them, then I`m ok. I think Greece would be too hot for me, give me Iceland any day, not for shopping of course ! The sea is ok, I also used to swim in sea off Seaburn and Runswick Bay, cold, but wakes one up.

Keep walking , or run, then life won`t catch you up, keep ahead of it. Cycling is excellent exercise for the lungs, did some gardening Monday as that ain`t too bad, sort of. Take care young lady, stay safe and all that jive. Must dash, dog is needing food.

[Suzie42 in reply to ding_dong_bell]

Did you see my post today? Haematologist phoned me with news that I have yet another illness, so nit so happy this evening. Chat soon

[ding_dong_bell in reply to Suzie42]

I`m only getting notified of your replies, so never saw it. I`ve been unwell couple of days, where it is so tiring just to move around, I guess those with IPF know this malady very well. I do hope they can sort you out Suzie , it is dreadful being poorly, I do feel for you now I have chatted to you, I have found out from experience that wishing and hoping are a waste of time, when health, or perhaps anything is concerned. They say we are masters of our own destiny, but even that is bollocks when it comes to certain health issues. No one has control, nor blame over certain health issues, yet may still get one that is ultimately fatal. Then the doctors have to play at God and try to save a person, the younger you are , the more chance you have, get to a certain age and they, the Gov, won`t spend too much with no chance of getting it back. They have a chance to get it back if person is young and has years of work left ahead of them, via tax etc., see my point ? It holds some validity.

[Suzie42 in reply to ding_dong_bell]

Im sorry you have not been well.

Just waiting to hear from Bromoton if I can stay on drug, blood tests back saying my liver normal, so thats good.

Im feeling okay just fed up with being told ive got SLL (small lympocytic lymphoma) a type of cancer in the lymph nodes. No treatment at the moment. I feel now ive had more than my fair share.

I certainly and see your point and agree with you. Its all now about choices we have and should i say luck.

Bye for now young man

[ding_dong_bell in reply to Suzie42]

Not a lot I can say to that diagnosis, except except chin up, how corny. I always say, expect the worst and hope for the best in life. Kids say I`m a pesimist, not true, I`m a realist, totally different, then I become a stoic if worst happens, pointless fighting monsters that cannot be defeated, the end result is always the same.

I`m sorry for being in such a cheerful mood and do wish you well young lady

[Suzie42 in reply to ding_dong_bell]

Thank you

[Suzie42]

The problem is this drug is the best you can get, at the moment it's the newest and seeing there are only 2 drugs that can help our condition I had wanted to give it a good go.

[Woolfe31]

OFEV worked after about 6 weeks . Then regular checks to monitor you. Good luck