The info sheet with Seretide (I'm on 125, 2 puffs twice daily) says that shaky feelings will ""get less as treatment continues."" Does this really happen? And how long are we talking about?
I've been taking it for almost two weeks. I had some cramping in the first few days, but that seems to have stopped (my left arm suddenly cramped while I was cutting up my dinner, small muscles in my foot, my neck when I yawned...).
I'm also taking Salbutamol, 2 puffs every four hours, so that may be contributing to the shakiness, but I was already taking that and didn't have shakiness to a bothersome degree until I added the Seretide.
I'm also on seretide125 twice daily, and suffered with muscle cramps, but after a few months these stopped, but never suffered with the shakes, it is possible, but could be the salbutamol, thats more common in higher doses such as the one your on. Most side effects usually disappear after a few months, but as it's a new(ish) symptom, then the seretide could contribute to it. Is it possible to give your GP or asthma nurse a ring, and ask to speak to them, just to put your mind at ease.
Chris
As I'm still new to all this, I'm not sure whether I can talk to anyone on the phone - of course, I'd be able to see them if there were serious problems, but I don't know how they handle minor queries. My next appointment (first one with the nurse) is at the start of October.
I don't want to reduce the salbutamol dose because although they're pretty faint now, the symptoms haven't entirely gone yet, and late Sept/Oct has been my worst allergy season for the last few years.
If it doesn't clear up, I'll give them a ring, but since the info sheet said it usually improved, I wondered how long to give it.
I've just ordered a prescription prepayment :(. Before this I hadn't seen a doctor for over ten years, which I much preferred!
Felix,
As it's only been two weeks on the seretide, and I hope you are seeing a benefit, give it a few more weeks, the shakes may never totally disappear, but they don't sound as bad from your second post as the first.
I have spoken to my asthma nurse once on the phone, not sure if it was just by chance, but she was in the office when i rang and heard her voice in the background. May be worth finding out if you could get a general query answered over the phone, it would certainly save them time, and make available a time slot for someone who needed to be seen.
I was like you, not seeing the Dr for ages, infact we joked, that if paper records still existed, mine would be at the bottom of the pile in the back corner, but over the last year, it would have become a rather well worn dog eared thing, so i can sympathise with you there.
The appointment with the nurse will be good news, as you get more time with them, Julie, my asthma nurse usually has a time slot of 20-30 mins per patient, so you can certainly cover a great deal. If you have any questions, then do write them down and take them with you, it's really easy to forget things when there.
Good luck, hope things improve.
Chris
I think I'll have quite a list of questions by the time I see the nurse! I'd better start writing them down now.
The shakiness varies - sometimes it's quite bothersome, and other times more in the background. Last night it was a bit worse - not shaking at night, just feeling a bit jittery and not sleeping well. I was wondering about trying to space out the salbutamol doses a little bit more, but I'm still getting a sort of cold feeling when I breathe in, and wishing that I didn't have to breathe, or that the air could be pre-heated, so I'm feeling stuck between not wanting to use more reliever because it makes me jittery, and not wanting to use less because my chest starts to feel tight.
One thing I might suggest is, do you have a spacer to use, I find that if i use the ventolin through it, then there is a huge difference, so may be worth trying, if not then ask if you can have one, it may then allow you to reduce the amount you require.
Thanks for the suggestion. I don't have a spacer, but it's on my list of things to ask about. It certainly sounds worth trying.
I tried reducing the frequency of the salbutamol today. I didn't take a 12 o'clock dose. Felt a bit of the tight/cold chest through the afternoon, though my peak flow was still ~540, and I went up and down several flights of stairs without problem. I did the 4 o'clock dose, and felt a bit easier, but not much. Had dinner, which improved things, and feel fine now. It's the first time in a while that I haven't had either symptoms or side effects. Actually, there's a bit of the cold, tight feeling, but not much, and it's just such a relief not to feel so jittery. It's good to know it goes away relatively quickly, and for me, seems to cut in at around eight puffs per day on top of the seretide. Eight puffs were OK when I was using it with the brown inhaler.
It seems the tremors are side effects of both salbutamol (blue - short acting bronchodilator) or salmeterol (slow bronchodilator - a component in the purple inhaler) but I can't stop the salmeterol without stopping the steroid, which I don't want to do at the moment, so that's why I chose the salbutamol to change.
Sorry to bore you with all the details, but it helps me to think it through :).
Felix,
Good to hear that you are able to remove 1 dose of the ventolin, the goal with seretide should be not to require any ventolin, so do take it easy, but with a peak flow that high during last winter I'd feel envious and wish for similar reading.
Funny, waking up this morning, not sure if it reading this, but I felt a slight tremor in my arms and legs, think it had always been there, but nothing to notice, or not something that bothers me.
take care
chris
I hope I'm not spreading the tremors!
I definitely want to try using a spacer.
I can reduce the salbutamol dose a bit, but looking at the info on spacers, with more of the drug going to my lungs, and less to the rest of my body, I'd get a bit more leeway to be able to take as much as I need to control symptoms without getting side effects.
My throat has been sore all day today, and if that's caused by the steroids, I'd be very keen to do something to get them to my lungs, not my throat.
I'll try ringing the surgery tomorrow - I don't fancy having a sore throat for the next month until I see the nurse. Do you know if I actually need a prescription, or if I could just buy a spacer (assuming they're not very expensive)?
Hey Felix,
You get them on prescription but if you have a good relationship with your surgery they may just leave a script out for you to collect rather than having to see someone.
Cheers
Fee
Thanks, Fee. I don't really have much of any kind of relationship with the surgery, because the only contact I'd had until a couple of months ago was some injections before a holiday in 1999. I just thought that if they were cheap and available OTC it might be less bother to just buy one, but if you can't do that, I'll ring up and see what they can do.
Hi again Felix,
I just googled this and you can buy them online, you would need the one with the new EU scale on as this is the one health professionals are using now. It's probably not much cheaper than getting a script though and I think you said you're getting a prepayment certificate? (Or I may be confused with another post - doing lots of reading today as stuck in chair due to poorly lungs) Anyways, it's a good idea to have one. I find that it helps me to take the decision when to call an ambulance as I have protocols written out for me...and you can't debate whether or not you're unwell enough with an inanimate object! Lol!
Anyway - best of luck with it
Fee
Hey again Felix,
I just googled this and you can buy them online. Might cost you more than a script once you add postage and packing though. If you do buy one then be sure to get the one with the new EU scale on it as that is the one the professionals are all using now.
I find mine invaluable in monitoring how things are going...you can get very used to poor air flow very quickly and miss the start of a deterioration.
Take care
Fee
Fee, that sounds as if you're thinking of a peak flow meter? I have one of those - they actually prescribed it the first time a saw a GP. What I'm after now is a spacer that you use with your inhalers. It helps to get more of the drug into your lungs and less into your mouth (and the rest of your body).
oh dearie dearie me....you are quite right. I started off talking about a spacer and then confuzzled meself and started talking about (and googled!) a peak flow. Sad really, I can only plead that courses of oral steroids do weird things to my brain!
Sorry, I've now googled the correct thing and pasted a link below, not recommending any particular site just that this has a picture so you can see what we're talking about! This is one type, most commonly used I think and has a large chamber.
That's the one. And cheaper than the prescription cost too! I'll pop in to a couple of chemists in town today and see if I can get one.
Thank you for tracking that down. When I searched, I found lots of people writing about them, but nobody seemed to be selling them.
I bought my own spacer online, with postage it was still around £1 cheaper than a script.
£4.78 from Superdrug. I tried a small independent chemist first, but they only had the smaller spacers (Aerochamber?). I think I read that they don't work quite as well as the big ones? But I can see they might be a good compromise if you needed something more portable.
I really hope this helps.
Oh, well tracked down Felix!
Think I might pop out and get an aerochamber as the volumatic is a bit bulky to take around at work and it would be very useful to have a spacer in my handbag!
Also good news that it's so much cheaper than getting it on prescription...I do wish the docs would tell you when it's like that cos it would be a lot cheaper for various things in the long run if you pay for scripts.
Anyway,
Thanks again!
Fee
The aerochamber was a little bit more expensive - seven pounds something, but not much different from the prescription charge, and without the bother of getting a prescription.
seretide
Do you need the ventolin as well as the seretide or would a higher dose of seretide enable you to only use ventolin for exercise etc? I had cramp usually in my leg or foot for a while after starting seretide and my nurse suggested eating bananas. I also tried drinking a small glassful of tonic water (with quinine) every day, then once in a while once it stopped and these did the trick. I don't often get it now and as soon as I do I eat a banana. I wonder if it affects your potassium levels using seretide, I haven't checked but I seem to remember the instructions mention this, and just as athletes will eat bananas to readjust their salt levels so I found it helpful. Just one a day will be fine. I think also a reduction of the ventolin would help if your nurse thinks you can do that, check first with her. Check your PFR of course as usual. These worked for me, I'm not a doctor though.
you can try bananas for the cramp, but I've eaten 1 daily for as long as I can remember and still got cramp, did a little tonight in my toes while in the pool.
Changing to the higher dose of Seretide means more steroid, and the same amount of LABA. I've been wondering if that's what I need, but of course, it needs a prescription, so won't be something I can try on my own. At the moment, with Salbutamol 3-4 times per day, I can barely feel any symptoms, but I start getting a tight, cold feeling and mucus if I reduce it much. The current dose of Seretide isn't enough on its own. I don't really want to keep on taking this amount of Salbutamol in the long term, so I hope the nurse will have some ideas.When I had a blood test done once, my potassium levels were right at the bottom end of normal, so it's quite plausible that any disruption would drop them too low. Avocados and spinach are good for potassium, and tomatoes aren't bad. I don't know why bananas get all the credit :). I did take a few potassium tablets when I started getting cramps, but luckily that didn't last long.My PEF doesn't seem to vary much, even when I feel my symptoms are worse, so it hasn't really been a very good indicator for me, though I keep measuring it, and trying for a new personal best.I have my first appointment with the nurse at the beginning of October. I'm hoping that the spacer will take care of the side effects, so it will all be nice and quiet by the time I see her, and we can work out the best regimen to keep it that way through the winter, so I don't find myself trying not to breathe every time I go outside.The shaking is OK at the moment, but I suppose the sore throat will take a few days to go away.
Felix, now that you have a space do also use the seretide through it, and not just the ventolin.
Thanks for the reminder - yes, I'll use it for both.
A week after I first posted this, I'm still feeling shaky enough of the time that I really don't like it. The sore throat has cleared now - maybe that's because of using the spacer. It's not so much the hand tremor that bothers me as the generally edgy feeling. Yesterday I just did two lots of two puffs with the salbutamol, in addition to the 2x2 seretide. It wasn't quite enough to keep the tight chested feeling away, so it took a long time to get to sleep because of that, but I woke up early feeling jittery. My pulse isn't actually racing, but it's a bit higher than usual (about 75). Mainly, though, I just don't like feeling this way, and it seems too high a price to pay for just barely controlling symptoms that weren't all that extreme in the first place.
I think I'll go back to the doctor rather than wait another month until my nurse's appointment. I really hope they can find something that will actually make me feel better rather than just feeling bad in a different way.
Felix,
Sorry to hear you're still feeling shaky, it's still early days, but if it bothers you then a visit to your GP is best. The reduction in ventolin is good news, that wasn't possible a week ago, so that shows you are getting better, and the sore throat has gone, so another positive.
The weather here in somerset is very muggy and damp, and not good, might be some of the trouble for you sleeping.
Good luck at the Dr's and hope he can suggest something that helps.
Chris
You're right, there have been some improvements - last night I was kept awake for a while by asthma symptoms, but there have been quite a few nights recently when that hasn't happened. But I don't like the nervy edgy feeling, so I wanted to see if the doctor had any thoughts rather than just picking up the same prescription again for the next month until my nurse's appointment.
I also managed a personal best peak flow yesterday, though I'm not sure if it was a genuine improvement in lung function; an improvement in blowing technique; or a pig-headed determination to get the thing up to 550 even if I got a hernia in the process ;).
Hi Felix,
Good new on the new PB. It does become a test to see if you can get it higher, and I was never sure either. With the manual meter I found that if I used my abs to breath hard with, i would get a higher reading than using thoracic breathing, never did quite get the hernia, but not far off i reckon at times. Doesn't seem to work with the electronic meter, damn ;D
Hope the doc managed to put your mind at ease, and either said things will improve, or gave you something else to try, which seems a little quick.
Chris
My appointment with the doctor isn't until Thursday - I didn't want to wait a month, but there wasn't any need to take up the emergency slots.
The doctor gave me Symbicort to try, though I'm not sure why a different LABA wouldn't have the same effect - they seem to list the same side effects for all of them. Anyway I'll see how it goes. Unfortunately, it won't work with the spacer, so I hope the sore throat doesn't come back.
The doctor also mentioned that she's still keeping an open mind as to whether it is actually asthma.
Felix,
for some people symbicort works better than seretide, so lets hope you're one of those, yes the side effects listed are the same, but as it's a different LABA, you may be OK.
I was a bit pessimistic at first, but after thinking about it, it occurred to me that there's another difference (apart from the precise formulation). My doctor wants me to use the SMART approach - so the Symbicort is both preventer and reliever. That means that any time you use extra relief medication, you're also getting more steroid. Maybe that will mean I don't need to use so much, and that the underlying inflammation will reduce more than using a lot of salbutamol. I hope so, anyway.
I suppose it will take a few days at least before I can really tell what's going on.
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