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Struggling with Seretide

Swerv profile image
54 Replies

I have been on Seretide for nearly 6 months now and suffering from the side effects. My skin is very thin especially on my arms and i keep tearing the skin. I have huge bruises on my legs even though i don't remember bumping into anything, plus the last 2 months i have put on 7kg even though i have a very healthy diet of fruits, veg and salads. These are all known side effects of Seretide...just wondering what alternative steroid i should suggest to my specialist. I am seeing him on the 25th of this month.

I live in Thailand so it is a case of what is available here.

To recap i am COPD mild stage 1.

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Swerv
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54 Replies
FarmerD profile image
FarmerD

Hi Swerv,I,m very severe emphysema,Fev 23% up from 20%. Been on seretide500 for over a year,also 5mg prednisolone maintainance.I have thin skin,bad eyes,nails,fillings have dropped out.Just have to grin and bear it as far as I know.Do you get plenty exercise to keep the weight down?I,m just waiting for LVRS,hopefully get off the damn steroids.Good luck.D.

Swerv profile image
Swerv in reply to FarmerD

Hi FarmerD, i am exercising although not as much as i would like to. According to the web site putting weight on is one of the side effects of Seretide. My friend, who is only 46 years old was diagnosed same time as me in March and he has put on 22kg despite playing golf regularly.

I note that some people are taking Symbicort and wondered if i should suggest this to my specialist?

Polly4acre profile image
Polly4acre

I have been on Seretide 500 for sixteen months now. The skin on my forearms and backs of my hands tears easily like yours, and big bruises appear from nowhere. I have also piled on the weight despite a good healthy diet and my eyesight has become worse. It must be side effects of this inhaler.I gave up smoking on the day I was diagnosed COPD, cold turkey and have not smoked a single cigarette since, not even an E cigarette. Due soon for a lung function test and hope I can, maybe have a lower dose of Seretide. Polly4acre.

Swerv profile image
Swerv in reply to Polly4acre

Hi pollyacre.

If you go to the seretide web site you will all the side effects that you, me and others have to put up with.

I know some people are on symbicort, are the side effects the same?

Need to google it.

Swerv profile image
Swerv in reply to Polly4acre

Hi Polly

I am only on 250 so i would hate to increase to 500.

I have googled symbicord and it looks just as bad.

Minushabens profile image
Minushabens

My consultant switched me from Seretide to Symbicort a couple of months ago. Her reasoning though was that seretide lowers your resistance to infection so it gave me a better chance of fighting off the bugs. I'm a bit prone to asthma flare ups these days regardless of medication so it's quite hard to make a full judgement of how effective it is but on the whole I aren't aware of any side effects.

I've been on seretide for years now too, and I've gained weight, my specialist nurse never mentioned it could be the seretide, I just thought it was due to limited exercise I can do and I like food lol 😳 but I don't eat enough to warrant the weight gain really. I've tried symbicort and fostair and neither worked that well for me so I'm sticking with seretide for now until a new one is suggested to me . Take care xx Sonia xx

Swerv profile image
Swerv in reply to

Hi Sonia

Unfortunately one of the side effects of seretide is weight gain. I have suddenly gained 7kg in about 8 weeks. A friend of mine gained 22kg.

I have been looking at symbicort but it looks just as bad.

I have fruit juices ( juiced and blended) for breakfast, tuna sandwich for lunch and most nights a salad, so it's not the food.

Google seretide side effects and you will see a whole list of them.

Merv

in reply to Swerv

Thanks merv, I'll have a look at them, I never read side effects I wait to see if it helps firstly and deal with effects as they crop up, to be fair being able to breathe is my main concern, but gaining weight surely doesn't help with that either long term. Oh the joys eh. Xx Sonia xx

Dedalus profile image
Dedalus

As you're only mild, why don't you ask your GP to prescribe a non-steroidal inhaler - I couldn't get along with the steroid contents at all, nor can I take the prednisolone, so I was taking Spiriva and am now on Eklira Genuair, which is better for the kidneys (as I only have one). Just a thought - there are quite a few non-steroidal inhalers out there. Best of luck.

Swerv profile image
Swerv in reply to Dedalus

Hi Dedalus

Thanks for the advice. I will mention it to my specialist, although he is not an easy guy to get on with and he is the only pulmonologist on my island.

James48 profile image
James48

I think it's the Prednisoline causing thin skin. I get the same and the bruises vary. Cuts appear out of nowhere with no idea how I got them. Steroids are known to increase weight, specially round the tummy and developing 'man boobs'. Can't remember seeing any info about Seretide causing these problems but I will look.

I was changed recently from Seretide to Fostair as apparently, Seretide has associations with pneumonia. I was advised by my COPD team.

James :)

Swerv profile image
Swerv in reply to James48

Hi James,

yes definitely around the tummy and my boobs are now bigger than my girlfriends. haha.

If you google seretide there is a whole list of side effects.

katieoxo60 profile image
katieoxo60

Hi Swerv, your correct about the weight gain and it continues. I have put on several stones since being on seretide. However steroids by inhaler cause the least side effects. There is a new one out to replace Seretide with a name beginning with F might suit you, but it has lots of side effects too. Will look it up and get back to you worth a try, but as suggested there are several you could try if Seretide does not suit you. I have COPD and have been taking it for around five years.

SeasideSusie profile image
SeasideSusie

Hi Swerv

I had to have a course of Seretide 250 for a supposed episode of inflammation of the airways earlier this year. I didn't get on well with it at all. I didn't get the side effects you've had but it did cause me problems - irritation of the throat that caused a troublesome dry cough plus aches in my lungs felt in my back. I stopped the evening dose just so that I could get some sleep and my GP reduced my dose to Seretide 100 once a day and I still had the aching in my lungs. GP was diagnosing other conditions rather than accept it was the Seretide despite me saying the symptoms disappeared when I stopped.

I'm on Spiriva and have an FEV1 of 68% currently - it was 63% when I was originally diagnosed as moderate COPD.

Just wondering why, if you're mild stage 1, you're been prescribed Seretide as the information says it's for patients with FEV1 of less than 60% medicines.org.uk/emc/medici... and Symbicort is for FEV1 less than 50% medicines.org.uk/emc/medici....

Sorry I can't help with any suggestions for an alternative, I'm very sensitive to a lot of inhalers as most cause me side effects.

Swerv profile image
Swerv in reply to SeasideSusie

Hi seasideSusie,

Interesting information as my spirometry reading was 72%, which is mild.As you rightly point out seretide is for people with a reading of 60%.

I am going to print this out and show to my Dr.

I used to catch flu twice a year out here in Asia and was always given Seretide as my Dr. (same one i have now) would say that i had asthma and bronchitis. 5 days anti biotics and 30 days seretide it would clear up.

But then i did not catch flu for the last 4 years as i started having fruit smoothies in the morning.

Only diagnosed with COPD because i developed a cough in March this year.

Merv

kydam profile image
kydam

Do you use an inhaler or oral meds? I wdnt have thought an inhaler would cause these problems?

Swerv profile image
Swerv in reply to kydam

Hi Kydam

I use an inhaler twice a day.

If you google seretide side effects there are a whole range of them.

Merv

maccas profile image
maccas

Hi I was changed to Symbicort in May with no significant problems. I believe it is prednisone that causes all the side effects mentioned in posts. Since taking them my symptoms have been worse but they do help with breathing so they are a necessity for me.

katieoxo60 profile image
katieoxo60

Hi again Swerve, the drug they gave me instead of Seretide was Flutiform but it made me quite ill within a few days of use. My advice is take new drugs with caution. Best wishes for finding a drug that is best for you, it may take sometime.

Swerv profile image
Swerv in reply to katieoxo60

Thanks

jimmyw123 profile image
jimmyw123

hi swerv,

i should report this to your doctor, and let him decide if these "side effects" are from the seretide, if so he will change them.

We all tend to look at "the web" too much, whereas it can frighten us.

Remember seretide contains only [if its 500 micro-grams ],, half the amount of "steroids" contained in 1mg of tablet of steroid [prednisolone,]

,,,or one quarter if 250 mcs ]

i.e. 1,000 mcg,s = one milligram [mg]

i.e. my dose, quite regularly, has been 8x5mg=40mg [in one dose, per day] this is eighty times, the dose contained in 500 micrograms seretide,

which is 80,000 micrograms. compared to 500 mcg,s in seretide.

At that dose,it can, and does cause quite severe side-effects. As told to me by my doctor.

But any regular dose of any amount of "steroids" can cause problems. again, as told to me by my doctor.

As you are stage one copd,[i am on end stage ] i'm quite sure, if this be the case, your doctor can and will change your medication.

This off course is, IF it is the seretide be causing these problems for you. off course It may well be so.

There is always the slight chance, that something else maybe causing these problems,Only your doctor will be able to tell you this.

I know well "Swerv", that corticosteroids-[steroids], in any dose are a complete "pig" [for want of a better word :) ] of a medication, if you can do without them, all the better.

In your case this might be just so.

But best get your doctor to decide.

i wish you all the best Swerv,

sincere regards

jimmy

.

Swerv profile image
Swerv

Thanks Jimmy

Will57 profile image
Will57

I am 61 and take Symbicort twice daily, Spiriva once and keep my Ventolin with me. I get on many occasions deep red marks on my arms which can be mistaken as bruises and skin is thin. I went to a private specialist to discuss the matter and they informed me they were tiny blood vessels and it will keep happening but told me not to worry after talking in-depth about my COPD and the medicines I am taking.

I have blood tests every 6 months and all organs are functioning very well so that's hopefully a good sign.

Swerv profile image
Swerv in reply to Will57

I am going to talk to my specialist about decreading my seretide, currently 250, as a member on here sent me a link which stated that seretide is for copd of 60% or less. I am currently 72%, so i am either taking the wrong inhaler, or the dosage is too high..

I can live with the torn skin and bruises, but not the excess weight.

Merv

I take 2 puffs of 250 seratide in tghe morning and 2 puffs at night. Does this mean I am taking 1000 in all.

I have put on 5 stone since 2011 and I eat very well as I am diabetic Type 2 and have just started on Metformin which I really didn't want. The weight is soul destroying as I was so slim for 50 years.

Swerv profile image
Swerv in reply to

4 puffs a day sounds a lot, but depends on your stage and fev%.

I can put up with the skin tearing and the bruising, but i agree, the weight increase is hard to live with. I have always been quite slim around 11.5 to 12 stone. Now i have a huge belly and man breasts. Yet i eat salads 3-4 times a week plus loads of fruit.

Merv

warwickstag profile image
warwickstag in reply to Swerv

Hi Swerv,

Recently diagnosed with type 2 diabetes I've just attended an education course and discovered, loads of fruit = loads of calories due to the fructose content. Like you I love fruit and can snack on it all day but beware some fruits are very heavily laced with natural sugars, bananas for example. So like everything else it's "everything in moderation" and try and substitute more green veg for some of the fruit.

Swerv profile image
Swerv in reply to warwickstag

Hi warwickstag,

I know what you are saying about fruit, but i have been having my fruit smoothies in the morning for about 4 years now, with no change in weight.

I was a steady 74kg during that period, now suddenly shot to 80kg over the last 2 months with no change in diet.

It seems that a lot of people are suffering the same weight gain using seretide.

Merv

Smyth profile image
Smyth in reply to

Hello , I take 250 puffs of seretide morning and night and Ventolin using saline steri-neb and Spiriva 18 microgram I in the morning and am losing weight which I want to put back, don't why I am losing wait Jimmy

Swerv profile image
Swerv in reply to Smyth

Hi Smyth

Sorry, can't help you with that one except maybe you need more carbs in your diet?

Merv

My FEV is around 55% and I am in the moderate range.

I too think it is too much Seratide....

I eat a very low carb diet.

I am beginning to understand why I have gained so much weight now....

And the skin on my arms is also very thin. Thought it was my age (57)

I have always been slim. And natural long blonde hair as I was a gardener for 35 years and always out on my bike and had so much energy.

I have recently cut off all my hair (grade 1) as I found it too hard to manage my hair and I can't afford the hairdressers.

I haven't left my flat in 18 months. I am not the person I once was.

Emphasyma was diagnosed in 2011. I was fine and dandy til I got the awful news. Stopped smoking straightaway and the weight crept up by approx a stone a year.

I was 10 stone and now I am 15.

My diabetic levels have just gone up so now I am on Metformin which has an unfortunate side effect. Good job I live on my own and don't work !!

All my problems started when the COPD started. Then the diabetes took a hold when my weight got to about 14 stone.

All this is due to the drugs I am on.

I have only just pieced this together reading this thread....

Hello Swerv. Sorry to hear of your problems but where have you seen weight gain listed as a side effect? Your dose is quite low & youve only been on it 6 months. From long experience and knowledge of inhalers I doubt this would cause weight gain. If you look at the patient information leaflet medicines.org.uk/emc/PIL.37... weight gain is mentioned as rare, affecting less than 1 in 1000, taking high doses over a long time, which you havent. Robin

Swerv profile image
Swerv in reply to

Hi robinell.

I was diagnosed copd in march, gave up smoking within 12 days and changed my diet. I was a steady 74kg until 2 months ago when i started gaining about 1kg a week.

My friend was diagnosed same time as me, in march and he has gained 22kg despite playing regular golf and owning and participating in a muay thai gym.

I have received many replies from others who have unexplained weight gain.

On the sereitide web site it lists weight gain as a side effect. But like all side effects, they don't affect everyone.

Merv

gerrytlloyd profile image
gerrytlloyd

Without knowing what you are dealing with in detail, I discovered that my condition is helped a lot by taking dispersible aspirin on days when I sense a potential for asthma (I react to certain levels of cold humidity in the air.) It's certain benefit (in my case) is it reduces night-time wheezing very markedly if taken before bed. I have never had a repeat of loud, 'crackling' wheezing that I experienced last July, since I started using aspirin fairly regularly. I would challenge anybody to prove that aspirin has no beneficial effect on inflammation in the airways. bit.ly/salamol

Swerv profile image
Swerv in reply to gerrytlloyd

Hi Gerrytylloyd,

Great tip. I am always SOB in the mornings, took my seretide as normal around 0700 ( now 0945 here) but it was not doing anything. So i took half an aspirin about 30 minutes ago.....i feel great. No SOB at all.

I don't know why it has worked or how it has worked....just know is HAS WORKED.

Thanks

Merv

Need to get some more aspirin in.

gerrytlloyd profile image
gerrytlloyd in reply to Swerv

That's good. It is like that sometimes: just seems to hit the spot quickly. I do fall back onto salmeterol at least once a week when the weather conditions force asthma through, but at least that's not steroidal. Last year I was all over the place with meds working sometimes, sometimes not. The aspirin seems to have steadied things, touch wood.

clematis5932 profile image
clematis5932

Sorry to hear of your problems, I was on seratide for a number of years with no weight gain,in fact I lost two stone. After a hospital stay in December with pneumonia I was taken off seratide and put onto Fostair which is very good. I do not believe that seratide on its own would put on weight.

soulsaver profile image
soulsaver

You could try Formoterol or Spiriva or Seebi breezehaler and probably others, too - - no steroid element,they're just bronchodilators.

They have their own sides, the last two give me throat and sinus problems... but I appear to tolerate Formoterol well.

Did you have clenil modulite for the asthma? It's the usual first line steroid inhaler issued.

Swerv profile image
Swerv in reply to soulsaver

Hi soul saver

Sorry, never heard of clenil modulate, but will ask my Dr. About it.

I have bronchitis as well as asthma so maybe that is why i am on seretide, but reading a link someone sent me seretide is used on copd patients with a fev of 60% or less, mine is only 72%.

Got a lot of questions to ask my Dr., If he will listen and more importantly if he will reply.

Merv

stillmovin profile image
stillmovin

Hi Swerv I fully understand your concerns about side-effects. I didn't stay long on Seretide 250 as I felt some side-effects like nausea, very dry mouth and throat and bad dreams. That is nothing compared to yours but steroids didn't seem to do well with me. I was given Symbicort once by a doctor but I was too nervous to take it, not knowing exactly if it was a steroid or not. I came onto this forum and found out about Serevent, which is non-steroid, and I have been on that for several months (as well as Spiriva), it has no side-effects. However, I now think I may have to go onto a steroid one again as my bronchiectasis and COPD has become difficult to manage. It seems to be a case of trying out different meds until you find what is best for you, unfortunately. That is the stage I am at anyway. xxxx stillmovin

USAhousewife profile image
USAhousewife

Hello All,

I read your posts with a bit of ? (I don't what to call it) .. I'm on all 3. My maintence dosage of Prednisone is 20 mg. I use Sprivia every morning, Symbacort morning and night. I bounce within a 10 lb range. I thought it was my metabolism slowing down, I am 58 years old.

cybergran41 profile image
cybergran41

Hello Swerv, I have to say I am surprised that you are on Seretide if you are only stage one, I wouldn't have thought you would need steroids yet. I take it and have had no problems with it, I am not sure what else you can have but I would seriously have a word with the specialist and ask him why you are on steroids. This is only my opinion obviously, but I really would check x

Swerv profile image
Swerv in reply to cybergran41

Hi Cybergran

I am also starting to wonder why i am on seretide. Someone sent me a link which stated that seretide is for copd patients with an fev of 60% or less, yet i am only 72%.

But, i wake up every morning SOB as i am now, 0745 here. Took my seretide about 45 minutes ago and hopefully my breathing will be under control in the next hour or so....it is very slow working.

Merv

cybergran41 profile image
cybergran41 in reply to Swerv

Good morning Merv,. It really is a mystery to me why you are on steroids so early I didn't start with Seretide still I was at 35%, I also take Spiriva which as far as I know is non steroidal, have you got the Ventolin inhaler which you use as needed, if not you really do need it because it is there whenever you feel SOB, and if you are waking up sob try sleeping more in a sitting up position, that is not easy, especially if, like me you sleep almost flat, but a couple of extra pillows and a higher sleeping position might help. Before you think I am beginning to nag can I ask, do you do any exercises or even a good walk? it is very, very important to remain as active as is possible, swimming is also excellent, but be sure you are near something you can grab hold of in case you get sob. I will stop now Merv. I hope some of this may help xx

wallawalla profile image
wallawalla

From my own experience DUMP the seretide "keep off steroids" and be very careful with antibiotics. Try to find an alternative medicine therapist, I wish I had done years ago. Best of luck.

Swerv profile image
Swerv in reply to wallawalla

Sounds like good advice, but not easy out here as i live in Thailand on an island. Only one pulmonologist here.

Timberman profile image
Timberman in reply to wallawalla

Here's the bad news - I take penicillin every day as well as part of the post Leukaemia treatment! So I may take some further advice. Thanks.

Timberman profile image
Timberman

Oddly weight gain has not been a problem. I have been on Seretide 250 for 2-3 years and during that time undertook a GL diet regime that took off 35 kilos - yes! But I do have paper skin and have taken to wearing gloves for all jobs that might involve knocks or tear risks. I had stopped smoking back in 1993 and gained a lot of weight through that - I would incline to look at the smoking change for the weight gain; nicotine is I believe a known appetite suppressant and raises metabolic rates. More exercise (COPD I know!!!) and a review of diet and quantities might help. You could look at the GL diet regime from Patrick Holford? It online for starters.

Swerv profile image
Swerv in reply to Timberman

Hi Timberman

I gave up smoking nearly 6 months ago, 12 days after i was diagnosed with copd, i was then very sick for 5 weeks as i had a reaction to quit smoking and actually lost weight.

It is only in the last 8 weeks that i have suddenly piled on the weight, nearly 1kg a week. I have a very healthy diet of fruits and veg.

I put it down to seretide and many members on here have agreed. It is also shown as a side effect on the manufacturers web site.

The interesting thing is that according to a medical sheet that one member sent me is that i should not be on steroids at my stage. Seretide 250 is for copd patients with a lung capacity of 60% or less, mine is 72%.

So i will be having strong words with my specialist on the 25th.

Merv

fronkleblanc profile image
fronkleblanc

I have been on Seretide 250 for a number of years and have developed man boobs despite trying to exercise as much as I can, I swim, Run and Cycle not all at the same time.

The worst side effect I have had from it is Siniusitis and skin issues where a insect bite turned into a excma like effect on my legs for which they gave me more steroids this time as a topical cream but I used a bee product cream which eventually calmed it down

-glad profile image
-glad

At my request my nurse has put me back on Seratide .i too have very thin skin she has told me to keep it well moisurised to stop it tearing as you put it .i bruise easily but am taking warfarin for my p a f ,I've not notised any weight gain and i too eat lots of fruit and veg even the occasional bag of chips .lol.hope you get sorted .take care.x

Brendablue profile image
Brendablue

The same happened to me. I COPD III and was on Seretide for years and put on 2 stone in the first six months and have numerous scars on my arms and legs, even ending up in A&E with one tear on my leg from a foam filled pouffe. I decided to come off all steroids and replaced Seretide with Serevent after one senior doctor, not my consultant, told me they give steroids historically and there is no real evidence they are right for everyone

This has made no difference to my COPD, I've lost the weight and the skin on my arms and legs is still thin, this won't alter, but not carrying that extra weight is a bonus.

I have recently had lung volume reduction surgery, keyhole was not an option. My post op scar went from under my arm round to my mid back, about 12 inches. It's 3 months on and my breathing is much better, my question is that I'm still suffering from very painful neuropathic nerve damage on my chest and back. Can't find any information as to how long this will last, and it's getting me down! anyone been through this?

Swerv profile image
Swerv

Hi Bredablue, i posted an update this morning regarding the seretide and after a confrontation....not a consultation, i am now on spiriva which is non steroid.

Sorry, can't help with your other problem

Merv

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