steroid withdrawal

[Bronchiectasislady69]

Hi fellow lungies

I have posted before on the British Lung Website years ago about the steroids. This is the first time on this new sight. I have COPD and Bronchiectasis. I have been poorly with a chest infection or exacerbation since Feb 12th. It all started with a cold and after fighting it off my chest with extra extra chest clearing I managed to keep in my head for about 2 weeks. Then it went down and things became tight on the chest so decided time to take the emergency meds. I do have a respiratory nurse who rings me twice a year only and who I found out was on holiday until June so no help at all so took my emergency AB Clarithymycin 500mg for one week and then because I have Bronchiectasis started a second course with the steroids too. I am never very well on the steroids and was advised another time to just start on 4 x 5mg and then taper down. I can never take them for just a week or two and stop. In the past I tried and had an absolute melt down! I am now slowly tapering down to 2 x 1mg and still feel really awful mentally and physically. . I have calculated that I will be off of them in about 8 days time , thank goodness. My question to everyone is are there any other sufferers like me who cannot tolerate steroids? I have discussed it before with the Respiratory nurse and a doctor once and basically they just said take them , you need them to get better! I am not feeling that at present! Also any tips for recovery? Any tonics recommended and does everyone suffer like this for weeks? I am getting a bit depressed about feeling like this for so long? I am quite a social but sensibly safe person and just get fed up with being asked to go out somewhere and having to refuse because I am still not feeling well enough. I can hear them thinking really it’s been weeks/ months of illness what’s going on? Pretty fed up all round really and just hope when I am off the steroids I will start to feel better, I would appreciate any help or suggestions thanks

[Suzie42]

I absolutely hate taking prednisone, this steroid affects a lot of us on this forum. Depression is one symptom. I generally feel really unwell taking them and I will only now take them if there is nothing else. Don't forget steroids save countless lives. I do think that us with bad reactions should be careful and definitely coming off them very slowly. I had 3 courses of them last summer and withdrawal symptoms were awful. Hopefully I will not need them again for a while.

My only advise to you is to keep well hydrated , lack of fluids really makes breathing problems worse and when well, as fit as possible.

I hope you feel better soon.

[Bronchiectasislady69 in reply to Suzie42]

hi Suzie42 Thank you for our reply it makes me feel better that I am not alone on this. One of my friends who has COPD can take them with absolutely no bad effect and cannot understand why I get so poorly. Drinking lots of fluids thanks and I have actually been out for a wee walk today but feel so drained now! At least I have only about 7 to 9 days to go hopefully fingers crossed to be off of them.

Thanks for your reply and summer is coming. I think we will all feel better with some sunshine xx

[Suzie42 in reply to Bronchiectasislady69]

We have just had snow, hail, thunder and lightning here unbelievable

[Bronchiectasislady69 in reply to Suzie42]

yes unbelievable for spring!! We were lucky with our walk but yes frosty rain here this afternoon! X

[PaulineHM]

Hello! You have my full sympathy re steroids and withdrawal. About 7 years ago I had a horrible time with the asthma component of my COPD! I was ill for months and became physically dependent on the flippin ‘devils tic tacs’ .

The Resp team who were supporting me worked with me on a reduction programme of reducing by 1 mg per week! It took 6 months but I got off them, despite feeling rough at times. I am so glad I got off them.

Now if I need to take them I am very wary about how long I take them for because I now I know how dependent I can become on them.

Are you doing any exercise? Getting out at all ? Even a slow pace can help you feel better - we decondition so quickly when we are unwell. Could the Resp physio help you at all with this ?

Keep in touch on here and hope you feel better very soon.

Go well.

Pauline

[Bronchiectasislady69 in reply to PaulineHM]

hi Pauline

Thank you for your reply. I love that you called them devils tic tacs . Yes I will absolutely second that name for them! 😂

I have been out for a wee walk today. We live in the countryside so a lovely walk. Cowslips and Bluebells out and the sun too! Lots of fresh air too. Feeling absolutely drained now tho but I do agree with you that exercise really helps especially with the miseries.

Best wishes to you and Go well too x

[Izb1]

My doctor is loathe to give out steroids and must say I feel so much better on them due to the amount of inflammation I must have I think due to the r.a. I suffer with, but she only ever gives me a week and I never suffer withdrawal because I am not on them long enough. So I mainly have just the antibiotics when suffering an exacerbation. I use probiotics after using a'bs as they destroy your gut bacteria and if I dont pick up well use Metatone tonic to get me back on track. Hope you start to feel well soon x

[GD53 in reply to Izb1]

Morning Izb1. 😊 A question 🤔. What probiotic do you take? Never used them yet but after last illness, after 3 lots of antibiotics and sliding scale prednisolone, my gut was extremely upset. Perhaps it would benefit me to take them. Kind regards. Dawn.xx 🥰

[Izb1 in reply to GD53]

As I cant get into the city centre at the moment I am using a Holland & Barrett one called Gut Powered for the immune system. I also have Kefir and probiotic yoghurt to help with gut health x

[Bronchiectasislady69 in reply to Izb1]

Hi Izb1 yes I have been looking at probiotics as a way to build up my immune system again. I think I am right that steroids knock that about as well! My friend has got some Kefir too to give me to try. I think she grows it like sough dough? Will have a go tho. Hope it tastes slightly nice? Xx

[Izb1 in reply to Bronchiectasislady69]

I find Kefir a bit like sour milk and a taste you get used to. I sometimes water it down with milk or blitz a banana and the yogurt I just mix with fresh fruit. I watched a video years ago that explained how your gut affects your health in lots of ways and is proving true nowadays, a happy gut is a happy body x

[eleanordigby in reply to Bronchiectasislady69]

The nicest kefir I’ve tried is the Yeo Valley drink. Even the flavoured ones (eg cherry, yum) don’t contain sugar. It’s often on special offer too

[Bronchiectasislady69 in reply to Bronchiectasislady69]

just wanted to add my friend brought the Kefir round to me with instructions to add milk to it. Very kind of her but I am afraid just tge smell made me feel sick. I think I will try the probiotics pills or as eleanordigby has suggested the Yeo Valley Drink. Thanks for recommending x

[GD53]

Thanks 😊 for your reply. Will look at Holland and Barratt and think I'll start with probiotic yoghurt. Definately need something for my unsettled gut! xx 🥰

[Patk1]

Usually whn I get that low,and admit it,I tend to pick up. I take vit d+ vit c ,omega 3oil capsule,sometimes multivit+mineral supplement.its hard as we get exhausted but still have to do lung clearance.U will get there x

[Tree20862]

A short walk each day will help a lot!

Maybe next time they can do a short course of the devil's tic tacs. They make me a bit manic, especially if on them for more than a week and higher dosage. Fortunately, I have not been on prednisone much since 2017 thanks to Xolair.

[Bronchiectasislady69 in reply to Tree20862]

Hi Tree20862 I have just seen you r reply to me about my steroid withdrawal and wonder what Xolair is please?

I am having a really bad time coming off of the steroids and would love it if there is an alternative I could try?

Thanks Di

[Tree20862 in reply to Bronchiectasislady69]

It is a biologic treatment for asthma and elevated IgE levels. Prescribed by my pulmonologist. Subq injections monthly.

[Artist44]

Hi, I too take steroids as I have COPD but I take 5 mgs every day because I too feel dreadful without them. I increase to 30mgs if I have an exacerbation.

I have tried many times to wean myself off slowly but I have never managed it. My Consultant said ‘not to worry, 5mgs is only what your body should be making anyway’. However, over the years my skin has become very thin and I always have numerous bruises under the skin which are not very attractive but it’s the price I have to pay.

I should add that I also have depression which has been life long and this also affects my mood but steroids do help me function better.

Best wishes

Jeanni

[Bronchiectasislady69 in reply to Artist44]

Hi Jeanni yes my skin has got very thin too on the steroids and I get red patches/bruising under the skin. I only have to knock my leg or arm and there it is the marking! I am down today to 1mg and cannot believe how rubbish I still feel going down to just 1mg. Tomorrow I am bracing myself for none!! I do not ever feel good on any amount of them I am afraid but reading your post at least you do get some benefits from them.

I know I do have to take them when my chest has been bad, as it has been of late. Just hope off of the steroids I will start to pick up.

Best Wishes to you too

Di