Steroid inhalers: I have COPD diagnosed... - Lung Conditions C...

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Steroid inhalers

1947Mags profile image
22 Replies

I have COPD diagnosed many years ago and was put on a blue and brown inhaler. I increasingly got more and more tired and exhausted until one day I did wonder if the inhalers were making me worse I stopped the brown inhaler and within a day or 2 felt much better told my Dr who said if I felt better just stay of it I was coping ok still doing housework and shopping until I had an exacerbation (a few years after stopping the brown inhaler) Thinking this was to be expected a different Dr put me on another steroid inhaler, over the years this has been changed many times as I feel after a little while they are doing me more harm than good Now I am on Seretide 500 feeling awful for last 6 months so today I stopped my Seretide. Has anyone else had a problem with steroid inhalers. Sorry this is so long winded.

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1947Mags profile image
1947Mags
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22 Replies
Magpuss profile image
Magpuss

I had a different problem with Seretide, I'd been using it (twice a day as prescribed) for three or four weeks when I started getting very severe cramps. I don't normally get the cramp but when I have had it, it's always been in my feet - this time, it was in my feet, calves, thighs and hands. I don't think my doc' believed it was caused by Seretide but he changed it for a salbutamol inhaler and after four days - no more cramps. I was tired while I was using it but I put that down to getting up two or three times in the night because of the cramp.

1947Mags profile image
1947Mags in reply to Magpuss

Thanks for your reply I also have dreadful cramps in my legs thought this may be circulatory but will monitor over the next week,

piping profile image
piping in reply to Magpuss

Magpus...have found taking extra magnesium has stopped all cramps.

Magpuss profile image
Magpuss in reply to piping

I did wonder if I should start taking a magnesium supplement but my doc' doesn't think I need to as my last blood test (in January) came back as 'normal', I'll be seeing him again later this week though, he sent me for a nerve conductivity test and results are now due. I do use magnesium lotion whenever I get any aches, pains - or cramp, and that helps.

piping profile image
piping in reply to Magpuss

best way of absorbing magnesium is through the skin....Epsom salts in a bucket of warm water for 10/15 minutes.Has been wonderful for me and very cheap!

Magpuss profile image
Magpuss in reply to piping

I've been using Epsom salts for so long now that l no longer think of 'why' I began using it - that's probably why I forgot to mention it😀

sorry, but don't you think this action was not a wee bit silly? I have been on steroid inhalers most of my life I remember reading from each pack do not stop taking without consulting your doctor as you may need to be weaned off over a period of time.

1947Mags profile image
1947Mags in reply to

Yes I know but I also know from experience over the last 10 years that I start off with a new steroid after they have changed my old one that I may feel not to bad for a while and then just go downhill. For over 2 years was nursing my late husband (he passed in April) I was on the bottom and got one chest infection after another now after 3 different types of antibiotic one of which I was on twice I feel that nothing is helping but I will monitor myself very carefully over next week and will go back and tell them how I feel, trouble is they will just try a different type so back to square one. I am now thinking that the medical profession really don't understand COPD sometimes I wonder if they care or is it because I am 70 so not worth bothering with, Sorry just about to get my violin out. My Mam would have called me a moaning minny. Thanks for bothering to reply

1947Mags profile image
1947Mags in reply to

Hi, just an update about my steroid inhaler, within a few days of stopping it the cramps in my legs virtually disappeared, I had thought I was feeling a little better, anyway back to the Dr's yesterday, another course of antibiotics and steroids. He has changed my long acting inhaler. I did tell him I had stopped my steroid inhaler all he asked was why and nodded, he has not told me to start it again or recommended a different one. But I am to have another spirometer test in 4 weeks, I have not had one for a few years every time it is due I am on antibiotics or have just finished them so that will be interesting I will again ask about the steroid inhaler. Take care all.

Magpuss profile image
Magpuss in reply to 1947Mags

So, it isn't 'just me' after all - my doc clearly hadn't heard of Seretide causing cramps before. Can I ask - which long acting non steroid inhaler you have please, I've just been given Salamol in its place.

1947Mags profile image
1947Mags in reply to Magpuss

Hi am now taking Spiolto Respimat instead of Spiriva Respimate. I found out about this from a recent post on Health Unlocked. But I don't think it is a steroid when I looked up the difference on Google it says (Spiriva Respimat) is an anticholinergic, which relaxes the airways and helps keep them open. Olodaterol (Striverdi Respimat) is a long-acting beta-2 agonist, which relaxes the muscle in the airways, making breathing easier. Does not make any sense to me but today is only day 1 so will be monitoring very closely. This was the posting which made me ask my Dr about it not sure who posted it as I only copied the following bit.

I am in the uk and use spiolto respimat which I think is the same drug mixture which for some reason is called stiolto in USA and Canada. I find it very good and have not as yet had to use my ventolin rescue inhaler since I have been using the spiolto. In fact it has allowed me to live much more normally. I can even manage to keep up with my 2 year old granddaughter. I also have been able to get my fitness levels up but going to the gym and walking the dogs. If it helps me with walking it will be wonderful presently the only way I can do my own shopping is with a mobility scooter which is no good for the strength in my legs.

Wow that was a bit long winded from me sorry if I have confused anyone

Magpuss profile image
Magpuss in reply to 1947Mags

Thank you for that, think I could probably do with a long acting one now. I'll see what my doc thinks.

piping profile image
piping in reply to Magpuss

Magnesium in a bath,and a bottle of tonic water for some reason work.

Magpuss profile image
Magpuss

Your entitled to get your violin out, being recently bereaved is enough to cope with without any additional problems. I have circulation problems too - 'veinous insufficiency' along with mild lymphodema in both of my lower legs but cramp wasnt a problem prior to using Seretide and it isn't now.

Dusty017 profile image
Dusty017 in reply to Magpuss

Hi All

My parter has COPD and chronic panic attacks and has had circulation problems due to Raynaulds. Not sure that he can get anything else. The point is that one birthday present I bought him early (birthday on Wednesday) was a circulation booster - it really does work.

Dr checked his urine and allowed him fluid tablets so swelling on ankles going down slowly and using the circulation booster at least once a day. Preferable twice a day but time does not always permit. Also have a friend that does Reflexology and Healing and gave him a good session on Saturday. He had a really good nights sleep which he has not had for months and panic attacks a bit more under control.

Don't let NHS write anyone off over 70 as we paid to get the NHS started those of use at 60 and over. Think you have to be a little assertive don't let Dr's ignore your concerns.

piping profile image
piping in reply to Magpuss

have your magnesium bath and drink a small bottle of tonic water.Apparantly the quinine works miracles.A full tableyt of quinine is too much.Believe me it works.Used to get terrible leg pain....has gone.

piping profile image
piping in reply to Magpuss

Magpuss me too.....now fine .

toshie profile image
toshie

Mags I just joined today and saw your post. Wow. Last year I was put on Symbicort and felt sick whenever I used it so dr said discontinue. A friend recently told me about the brown inhaler and my doctor said, ok buy it. I asked how it should be used and was told "as needed". Was talking to a friend last week, who is a pharmacist, trained in UK, and she told me I should use that inhaler 2 to 3 times each day as it is a maintenance inhaler, not a rescue inhaler. I started the next day and within 2 days my health was worse. Shaking, light-headed and stumbling. I began to wonder if this inhaler was the problem but stayed on it until 2 days ago. I am now feeling so much better. I have decided that I prefer to have quality rather than quantity and if meds are making me feel worse, I shall discontinue.

1947Mags profile image
1947Mags in reply to toshie

So sorry to hear you are having problems with your steroid inhaler I have read many articles about steroids quite a lot say they cause more problems than they solve, but others do not say that. I have been on several types over the last 10 years and all have been fine when started but over time give me problems ie extra tiredness/exhaustion and severe leg cramps. I am now on Spioloto Respimate which is a long acting non steroid inhaler with 2 medicines one to relax the airways and one to keep the airways open I am also on flixotide evohaler 250 mcg which is a steroid inhaler this along with the Spiloto is considered to be triple therapy. At the moment I am doing well on these but have only been on them about 4 months. I must also add that after several infections I was admitted to hospital on xmas day and had to have intravenous antibiotics which seem to have solved the problem. I can only hope you have a good respiratory Dr who know about COPD it seems to be difficult to get the right advice sometimes. You say your Dr said to buy the brown inhaler are you not in the UK.

Sorry about the long winded reply but COPD is not an easy illness and what suits one person some time does not suit another.

take care Mags

toshie profile image
toshie in reply to 1947Mags

Hi Mags

No, I am not in UK. I am in West Indies were treatment is non-existent. I rely on what feels best for me. Silly as it sounds, I have a huge Homemedics massager which I purchased whilst on a visit to family in UK. I thought it would help back problems but it is too heavy to lift on my own and I live alone. I have a housekeeper who comes in once a week and she massages my back, neck, shoulders and legs. My circulation has improved and I am able to massage legs myself, but every time she massages my back, my breathing improves. I also use dried coriander as a lung detoxifier, use magnesium spray and take lots of garlic. I have to use what is available and due to horrific costs of meds, I must find alternatives.

Stumpy55 profile image
Stumpy55 in reply to toshie

Hello toshie, nice to meet you and welcome to our site. The thing to remember when taking any medication is certain tablets, pumps etc, effects people in different ways. It's a case of getting it right but not to give up. You need to keep Intouch with G.P and his advice counts more so than a friend. I wish you well ✋️😊

1947Mags profile image
1947Mags in reply to toshie

PS sorry meant to add that in the uk I was told to use symbicort (which I have been on) morning and evening ie every 12 hours. Mags

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