Pulmonary fibrosis and emphysema and no meds

[Cos1]

Hi all

I was wondering if anyone has found themselves in my position I am currently on no meds as my consultant has weaned me off my symbicort and I have stopped taking ventolin I have been weaned off the symbicort so as to start I new inhaler I believe but don't know which one will find out in two weeks I feel I am struggling with breathing even justwalking from one room to another does any one think the hospital will agree to no meds as I refuse to take any steroids and just give me some oxygen at home when I need it many thanks

[Hacienda]

Wow, Sorry to hear that you are struggling with no Meds at this moment to help you. Why are they leaving you so Long, 2 weeks, Think I would Die without my Meds and I'm on Oxygen 16/7. I see you have requested no Steroids, that is your choice. We have all moaned about Preds & Symbicort , but they become a Life Saver to a lot of us. I do hope you receive the Oxygen and you can start to feel Better very Soon, Be Positive and Fight for your Needs. Stay Well & Exercise. xxxx

[Cos1 in reply to Hacienda]

Thank you for your response i do as much as I can exercise way and just take things slowly x

[Katinka46]

Well.... I am on no medications apart Warfarin. Very occasionally I take inhaled Salbutamol or Salmeterol but they have very little effect apart from the placebo one: ie I feel I have done everything I can to alleviate the breathlessness. My two conditions, chronic thromboembolic disease, (clot damage in the blood vessels) and obliterative bronchiolitis (fibrotic damage in the small airways), do not respond to treatment. Sorry, that doesn’t help you at all, does it? I am breathless all the time, even at rest. Just pace myself.

Kate

[Cos1 in reply to Katinka46]

Hi thank you for your reply I know what you mean just taking things very slowly but it gets a bit scary sometimes x

[chubby2x22]

I cant imagine how you get through each day, maybe a trip to A & E will help you two weeks is a long wait without meds. Jane

[Cos1 in reply to chubby2x22]

Thanks for your reply I'm going to see how things go bit reluctant about a and e but if it gets any worse will have to

[stone-UK]

Hi

If you have Ventolin use it four times a day, morning, noon, teatime and bedtime. If required anytime in between.

Oxygen therapy is not given to relief breathlessness, only to support your major organs.

[Hidden]

Hello Cos1. I don’t have either of your conditions and oral steroids are not treatment for my condition so I have no axe to grind on whether to take them or not. Reading your post has made me very concerned for you. You are struggling so much with two serious conditions. It is bad that you have no meds at all at the moment but as symbicort contains steroid I suppose that your con wants to start any new inhalers and treatment without the steroid being in your system.

I really think that you need a serious discussion with your consultant or someone whom you trust about the use of oral steroids to help you live with your condition. Of course, everybody seems to hate their side effects but it is a matter of weighing up the balance between that and the improvement which they can now bring to your breathing and therefore your daily life.

Sometimes we make a decision based on a particular set of circumstances, then our circumstances change which could mean an adjustment to that.

Hopefully your consultant will give you oxygen which may alleviate the need to make decisions about steroids for some time. I do hope that whichever way it goes you get help with your breathing to make life more enjoyable.

[Cos1 in reply to Hidden]

Thanks to you all for your replys

[Bkin]

I've not heard of anyone being weaned off an inhaler before starting another one but if you are saying to your doctor you refuse to take a steroid inhaler that could be why and also may be why you have been left without inhaler meds that will help you.

As suggested if you have some at home use the ventolin 3-4 times a day and try and see your doctor asap to discuss inhaler meds that will help you.

One specialising consultant told a friend of mine when she asked about stopping her inhaled steroid, "if you want to keep breathing adequately don't stop the steroid". This friend was on oxygen but it was insufficient on its own.

You don't actually get prescribed oxygen unless your blood oxygen levels are low to the point of risk to damaging other organs in your body. To determine if you need oxygen, a series of tests are carried out through respiratory team at the hospital, but initially speak with your GP.

Of course its entirely up to the individual if they take the recommended medicines prescribed, they are only prescribed to help you breathe easier, but no medical professional can force you to take them unless you are unconcious and in respiratory arrest and only then provided you have not arranged a do not resuscitate document on file.

Hope you are soon breathing easier, check in with your doctor asap or respiratory team at the hospital if you are already under a consultant.

[Cos1 in reply to Bkin]

Thank you for the advice