steroid withdrawal again!

[Bronchiectasislady69]

hi again. I have been messaging on here about my steroid withdrawal and I have had some very helpful replies. I have since been down to my Health Centre at last ……long story! I had my chest sounded and told not too bad but I am having a chest X Ray still tomorrow. I have been poorly since February and have had 2 courses of Clarithymycin because I have Bronchiectasis and started the steroids on the 2nd course of ABs as I am So ill on them. I felt dreadful. My other post on here I wrote earlier that I was coming down off of them. I did the 3 day go down one. I have been off of them a week today and feel SO drained and just not feeling good at all. My chest is still coughing up loose mucous but not green.

Yesterday when I went down to my Health Centre the nurse said maybe you need to go back on 5mg again? She said absolutely up to me but see what the XRay revealed but it would be 3 to 4 weeks before the results came through?

Just wondered what you would all do and any advice.? Fed up with feeling horrible with withdrawal but dreading going back on them. We are also going on a wee holiday by the sea in 12 days. I cannot believe I still do not feel well.

thanks again for reading

[Izb1]

I can't really advise but would suggest a good tonic to help you get back on your feet and sure the sea air will be a real help to you. It takes a while to get over illness and meds. Enjoy your holiday, take the meds with you in case you need them x

[Bronchiectasislady69 in reply to Izb1]

Hi Izb1 again thank you for your reply again. I am probably being very impatient about getting over this last bad bout of chest infection. I think you are right we do need time to get over them. As I am getting older I am finding that I do not bounce back like I use to either. Yes I will get some tonic and hopefully get some sunshine by the sea! Tonic will be available not sure about the sunshine though! Best Wishes to you x

[Izb1 in reply to Bronchiectasislady69]

So totally agree with you, it certainly takes longer to get over illness when we get older and think the sea air is a tonic in itself. Fingers crossed that the weather improves for you x

[GintyFerguson]

If I was in your shoes I would wait and see. If the phlegm isn't green then just keep getting it up. That should be easier by the sea air! I hate steroid effects too. Years ago they wanted to put me on longer term and I refused. I'm still here. You must do what you feel comfortable doing. God bless.

[Bronchiectasislady69 in reply to GintyFerguson]

Thank you Ginty for your kind reply. I just cannot really bare the thought of going back on them again after all my efforts to get off of them. I have started taking paracetamols as suggested by somebody on this site and they have helped. I agree with you not wanting to be on them long term and I can still get this muck off my chest ok so I think I will grin and bare this for a few more days and hopefully get some sunshine by the sea soon It’s raining here in Somerset today and I do not think that helps our chests either!! Best wishes to you Di

[GintyFerguson in reply to Bronchiectasislady69]

Have you ever seen a physio and been given active cycle of breathing and a flutter device? If not I recommend for lung clearing.

[cat50]

Did you put a sputum test in..?Do you nebulise sodium chloride.?I don’t know how long you have had Bronchiectasis for but it’s important you have a Bronchiectasis Consultant who can advise you on what your care plan is.If you know all this just ignore me .

[Bronchiectasislady69 in reply to cat50]

Hi cat 50 thank you for your reply. I have COPD and Asthma too. I had as a child pneumonia so that was the start of my troubles. My Respiratory Nurse is really nice but since covid it’s been a couple of phone calls a year. Our Health Centre has nobody except for a COPD nurse who was not qualified to sound my chest?? So she told me! I have asked the Doctor for a Referrel to the Bronchiectasis Consultant at our local Hospital and actually got one. I put all the details in and it came back with no appointments as yet. I rang them up and they said it could be up to 33 weeks wait!! I am a pensioner so not the richest person in the world but deliberating whether to take some of my savings out and go Private? It would be really good to have a proper plan when I am like this and have somebody monitoring me. I have really felt alone in this last episode. My Respiratory nurse has been on holiday since March back in June so no help there. I have been thinking about asking about getting a nebuliser. I do have a salt pipe and a face steamer and a flutter to bring the muck up! I really have tried to help myself but I agree with you it would be good to have a Bronchiectasis Consultant. I think I may have to pay though, ps I did put 2 sputum tests in but nothing recorded?

Thank you for your advice x

[Catsncrochet]

That withdrawal is so horrible. My husband makes me green smoothies and I eat apples, carrots and anything with slow sugars (low GI) to help get my energy back up.

I have been glad to have my little Phillips Innospire nebuliser but they are expensive now. I use it for saline, salbutamol and atrovent .

Your GP should give you a written asthma plan

I hope you feel better before your holiday!

[Bronchiectasislady69 in reply to Catsncrochet]

Hi there Catsncrochet thank you for your reply. I was 28 days on the steroids and have now tapered off. Last one was about 12 days ago so cannot believe I am still feeling wobbly and tired. I have been out for a walk today and did make it round but needed a sit in the garden after! I do have a strong steroid puffer so use that twice a day and it does make me feel a bit better for a while. Thank you for the advice I will certainly get my smoothie maker out and try some of the slow releasing fruit and vegetables. I did wonder if Lucozade glucose tablets would help too? I have been looking on Amazon at the nebuliser and you are right they are rather expensive. I may ask at my Health Centre if I could get one on prescription but I won’t hold my breath!,,

Best wishes to you and stay well

[Catsncrochet]

not Lucozade. You don’t want fast acting glucose. It raises your blood sugar v quickly then crashes you back down again.

[Caspiana]

Hello there. I don't know your full story so I may be speaking out of turn and I do apologize for that. Some of us are on a maintenance dose of Predisone. I have been on it for about nine years. I know the risks involved in taking long term steroids but I don't have much choice in the matter. My inflammation can get quite bad in my native lung (single lung transplant 2019). So with advice from my doctor I take measures to minimise the risks. If you feel better on them why not take a low maintenance dose? After I had my lung transplant I also had to taper down. The side effects were bad but it evened out over time. All I can say is be patient. It really takes time to get over these bad patches and it seems trying to 'hurry it up" makes one more upset and agitated. Sending you my best wishes. I hope you feel better very soon. xx 🌷

[Bronchiectasislady69 in reply to Caspiana]

hi Caspiana thank you for replying to my message about Steroid Withdrawal. Today I felt so poorly, so tired and this horrible shaky flu like feeling that I have had since taking my last Pred 2 weeks ago. This feeling just gets worst instead of better and today I had enough and emailed the Doc. I actually got a phone call which was amazing from her. I have to have a blood test to check to see if my Adrenal gland is not producing the Cortisol my body needs to make me feel better. She has told me after the blood test to take 1mg of steroid for a week and see if it improves and then I will get a phone call to c how I am getting on and then reduce every other day. I am happy to do that if it makes me feel better. The good thing about the phone all was she told me the XRay I had had done last Thursday was clear . To be honest I have felt so rubbish for so long I feared the worst. So really relieved about that. My mother died of lung cancer at 60 so I remember that so horribly well.

Thank you for your best wishes and I hope you keep well . Summer is coming 😃 xx

[Bronchiectasislady69]

steroid withdrawal again.

Further to my other posts about this problem about steroid withdrawal. I got a GP appointment online who arranged for me to have a blood test to see if my adrenal gland was working properly after taking 28 days of tapering down prednisone. In the mean time before the result came back she asked me if my chest felt tight and I said yes so she said go back on 1mg of Pred. The test came back borderline and by then I had taken 1mg for 3 days but then had such a job to stop them! My respiratory nurse who I finally got hold of could not believe how ill I was when I went cold turkey. I actually rang 111 at one point and they advised me to go to an and E. I did get lots of tests done which ruled out a lot of things but could not advise me what to do. It was my Respiratory nurse who said cold turkey. After feeling rubbish this week I have finally got off of them but I have a really sore chest! GP told me to take extra Ventolin which is helping and it is a bit. Just wondering if this has happened to anybody else. I really do not want to go back on the steroids I absolutely hate them but do I have a choice?

Thanks for reading. Just wanted to add that I have asthma Bronchiectasis and emphysema- 3 puffers ventolin Genuair 322 and my steroid puffer Fostair 200/6

[poppyshola]

Hi there .. on my last visit to my hospital I was advised to try taking Actimel drinks regularly and Activia live culture yogurts too ... so next shop I got 2 packs of the drinks and lots of the yogurts ... I've been having at least 2 drinks and 2 yogurts a day and must admit my tummy especially is feeling a lot better than it did ..plus the yogurts are useful for taking my pile of pills...Doctor said I needed to try to keep my good bugs topped up to fight the bad ones especially being on antibiotics so much ... it makes sense

Prednisolone were my rescue as many oral antibiotics upset my tummy , but since I had a fall and found i had osteoporosis I avoid prednisolone ..

I hope you feel better soon x