Thought I'd start a thread so we can share some of our horrible drug side effects and maybe learn and help eachother.
Side Effects!: Thought I'd start a... - Asthma Community ...
Side Effects!
79 Replies
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Aminophylline
Besdies the usual chronic nausea and headaches that blow my head off, today I have developed another one.....namely a pain in my backside.Weird, but definitely worse soon after taking it, any body else have this too?
It has got my Docs thinking, toxic maybe? Advice please!
I get a pain in my backside as a side effect of Pred.... its my early warning system am about to have an attack of herpes, so it shows up as Neuralgia. Can also warn me of possible shingles-type nerve endings very painful, so I usually treat it as neuralgia and that means rest, stop worrying, more camomile tea and lavender baths..
So it really is true (louise hay) its all a pain in the bum! Hope you get it sorted.
thats weird, on sunday i got pain just in one buttock, and going down the leg... it was half way between achey and crampy... i couldn't understand it... could be from the theophyllin, which i upped the dose of last week, which would make it a companion to the nausea, headache, diarhoea and palpitations (why do i have to get all the rare side effects??) or maybe its pred?? i don't know. i am just generally crampy, but not too bad.
and then theres the shakes, which come from the symbicort and of course the salbutamol. apparently my asthma nurse has never seen anyone with such bad shakes just from symbicort... nice to know i'm keeping her entertained! does brycanil give less shakes?? coz at the moment i often just choose to suffer the tight chest rather than turn into a jelly... which i'm sure can't be good for my lungs.
sorry this is so long!
pred
hello all
hope i'm doin' this ok. i get aches in my muscles (if they are still there) and in my bones have also got osteoporsis what can i take for this am trying cod liver oil am goin to gp tomorrow, any advise i can go armed with would be good.
thanks lisa xx
Hi Justy
The pain your buttock going down your leg sounds like sciatica, which I also get. Check it out with your gp.
I am getting a lot of muscle cramps too, put this down to the Pred.
so is the sciatica completely unrelated then? i get so confused.. i can't tell illness from side effects!
I dont know Justy. All I know is that I have had a continuous outbreak of herpes since October due to the Pred supprressing my immune system so it wont go away on its own. I tend to think that if we are taking such powerful drugs, then its most likely side effects except for pre-existing illnesses, if you know what I mean. Have a look at the leaflets and see if they mention problems with muscles or nerves, as I think sciatica is to do with nerve endings.
I'm no gp but when I get something like sciatica it comes as a shooting pain down my leg after a couple of days pain in the bum! The first pain is a sign to rest and I usually ignore it, but I guess its the body's way of saying, take a break.
If you dont want to go to your gp, ring the Asthma helpline, or the NHS helpline, they are really good and check things out for you.
Regards
Wendy
thanks wendy.. i was so tired on sunday that i had to rest anyway, and didn't think to mention it yesterday with the gp. if it comes back i'll certainly kick up a fuss! i'm such a chicken, i complain about every little pain!
S'ok Justy, sciatica isn't a little pain, its sometimes quite a big one, and if its new, its always worth checking out... am in bed myself this morning as all my nerve endings on my legs are painful, which is my early warning symptoms. 'Twas the dreaded gas bill yesterday that set me off worrying... oh well, more buckets of camomile tea.
Take care
Wendy x
Esomperazole (acide reflux drug) causes enalrged boobs so if you need more request it if not stay away!
Den
I get what I can only discribe as ""restless body"" I just can't keep still in bed at night. I can't get to sleep my legs hurt and ache anyone else have this? Didn't get to sleep til 3 last night.
Den,
That's a side effect I'll welcome ! I've just started esomeprazole - please can I have bigger boobs ? At the moment I'm struggling to find a bra with enough padding to fill out my wedding dress so they've got 4 months to grow !!!!
Isn't the bigger boobs bit only in Men though? Cant say I have noticed it with mine. (Come out, come out, where ever you are!) Is there really anybody out there who can vouch for it being true?!
Personally I found Lanzoprasole to be a better ie more effective anti GERD drug than Omeprazole and I am on a much higher dose of the latter. Number one side effect for me seems to be, well acid reflux!
My chest can vouch for it Sus. People thought i'd had a boob job, even my own mother asked!
woohooo!!! Parrrtayyyy!! I'm hoping theres more in there somewhere too
Jancy, not knowing if this applies to you or not, so please 'scuse if it doesn't.... also have restless legs, this being symptoms of menopause which I thought had gone using herbal remedies. However, since using Pred and inhalers have had more menopausal symptoms than for years... as these meds affect the hormone balance in our bodies, it could be that they affect the amount of oestrogen in the system, which could cause these symptoms?
Just a thought, joining up the dots, as I have been confused at the return of these symptoms - hot flushes, restless legs, insomnia.....
Mouth Problems
I am having issues with my mouth from meds at the mo, can you get thrush on the inside of your lips, because it feels like the insides of both my lips are peeling off and they are all white, almost blistered, my mum said it looked like trush but wasn't sure. Can you get it here or is it only in/on your throat.
Any suggestions as to what else it could be?
Thanks
Libby
xxx
Libby it may be thrush i have had iT all over my gums and tounge beofre. sorry to hear you are in a bad way. go and see your GP for some of those lovely thrush ""sweets""
JB
Yeah Libby I had that too; got a good mouthwash from my dentist which cured it in no time. Think you can buy it over the counter too - its called Corsodyl. So the routine was: use inhaler
rinse mouth
clean teeth
use mouthwash....
Also got my gp to change my steroid inhaler to a new one on the market, called Alvesco (80mg Ciclesonide. Gp hadnt heard of it yet and neither had pharmacist, buts its ace, no mouth ulcer at all after a week!!
Hey someone on alvesco!!! I been on the 160 for nearly a year now and love it. How are you getting on with it?
Hey Jenna! Well as far as side effects go, its brilliant. I am actually using this one all the time, whereas the others I stopped for a few days every time I got the mouth ulcers... erm -breathe or eat? Am still trying to control asthma whilst coming off Pred and asked my gp yesterday if i could use it twice a day - she said no, once a day at 80mg but its not doing its job yet....
The nurse at Asthma UK said use it twice a day, unsure what to do now, still too much gunk (yeuk), not having a good morning and feeling confused...
Will be perservering with it though, can't go back to horrible mouth being sore..
How are you?
Hey,
It is meant to be once daily, however I use mine more than once a day, so I would try it if the AUK nurse said it was ok. Also you could ask about the higher dose?
I went on it as a last resort as nothing else was working, and have found the same no side effects at all! Unfortunately havent managed to reduce pred yet though. Am trying now but not going terribly well. Oh well!
Hope your doing better today xx
Hi,
My son, Alfie (3), has pred alternated days and he is manic - can't sleep, can't sit still - not even long enough to eat so he's losing weight fast. The consultant is questioning whether his newly developed 'suspicious' sounding heart murmur thats going to be investigated is due to flixotide or serevent. Do all of these sound like typical side effects?
Margot
aarrrgh!!!
ok, bored of acid reflux / heartburn now. it started yesterday, it kept me awake last night, and its just getting worse! anyone know a way of making it better... short of waiting for gp??
Gwen30 in reply to
I find peppermint cordial helps a smal glass with some water
Thank god for these message boards !
I to have had a very sore mouth and had not connected it to my meds, I also have mad days ( that is what the other girls in the office call them) now I can explain them away with the "" its my meds"" I am on pred, seritide, ventolin, neb of sodium chioride 7%, fluticasone, bendroflumethiazide, ad-call, aldronic acid, and take omeprazole, now I need to ask is it just down to the munchies with the pred that my boobs have grown to a massive size or is it the omeprazole? but what reason can it be for my bum growing at the same pace as my boob's.
Is there any meds I can take to give me the side effect of looseng weight, if so bring them on!
Justy, quick remedy but doesn't last long is a glass of milk... longer term remedy my con gave me Omeprazole. From the chemist you can buy Gaviscon tabs or liquid which sits on the acid and really helps. Rennie really doesn't touch it when it gets to this stage....
Also avoid any acidic foods, which includes tomatoes and lettuce, also no alcohol at all until its gone for good as it really sets it off. Avoid acidic fruit including fruit juices.
Best remedy I have found is Peppermint Tea. I often have one at bedtime just in case its gonna get me in the night...
thanks dc, i'll give all them a go!
i've had a very weird afternoon... was getting weird pressure in my ears, which was made better by sucking on raisins... but then my whole throat/jaw cramped up... that was very freaky. since then my throat seems to have been swelling up too. i'm trying very hard not to panic completely, but if it gets much worse i may be finding myself a friendly healthcare professional.
Hello!
I was just wondering if any one else has developed problems with ventolin nebs? I've been using them for a long time with no ill-effect until recently. Now every time I use them the muscles in my arms and legs get very floppy and and my head gets very sore and ""fuzzy"". they still help me to breathe which is the most important thing, but I don't like the feeling I get when I use them. My GP mentioned something about tolerance levels with long term use, and I won't be seeing my consultant for a number of weeks to talk to him about it. I've used bricanyl in the past, but it didn't agree with me and I can't get away with reducing my ventolin nebs - I tried on Sunday with disastrous results. has anyone had this happen them with ventolin nebs and is there an alternative? Also has anyone used an ana-pen? [I may have the name wrong - apparently it's an adrenalin injection for severe allergic reaction] My doctor is talking about prescribing me one after a number of scary incidents recently, but I would rather know more about it first.
I am so fed up of all the complicated side effects. I also have a sore mouth caused by thrush from my flixotide nebs. I have acid reflux caused by my steroid tablets. My adrenal glands have failed because of my long term steroids so now I am stuck on steroids, whether my asthma is bad or not. On calcium to stop my bones packing in and on esomeprazole to stop my stomach reacting to the steroids. My legs ache and I am sooo tired. Sorry. Just needed a moan. Feel like its all so complicated. You take one medicine and end up having to take loads of others
Fofe,
I now use ANAPENS instead of Epipens!
Anapens are alot easier to use I have found over epipens!
Wheezer
hi
I have all the side effects of steroids and feel really depressed over it i have adrenal failure and gained loads of weight.
Ive just looked at my repeat meds list and realised that two thirds of my meds are actually to treat side effects of other medications !!
Hmmmmmmmmm sounds alot to me !!
Yes wheezer, mine too.
Calcium, Nystatin, esomeprozole etc all to treat side effects rather than asthma. Crazy isnt it. My steroids are also treating my adrenal glands rather than my asthma as I dont need to be on pred every day now I am much more stable. Steroids just replacing what adrenal glands are failing to make. Feel like I am wrecking my body with all these meds but at the same time have to be grateful that they have saved my life and I wouldnt be here without them.
pred and co
just wondering whether anyone else gets migraines and nose bleeds from pred, normally sets in if on 40 for more than a few days, but this time 10 days of 30mg has seen the onset of this. also get thrush and munchies/wieght gain and go up a cupsize
one thing i struggle with is which med is causing what side effect and whether it is the combination of drugs together that makes them worse...i'm rambling now so will shut up *hears the sighs of phew in the background!*
help i sound like a man!!
my voice has really deepend so much on my steroids that i often get mistaken for a man this is very embarrasing and humiliating as i am a 13 year old girl who gets teased bout her vioce
Alvesco
Standard starting dose of Alvesco is 160 once a day, 80 is a very low dose.
serevent
this horrid stuff gives me really bad shakes and nausea some of the time! its horrid, anyone else get that?
I think I now have or have had just about every pred side effect but the one I want - the early menopause - still eludes me any helpful suggestions would trade for the bp, blood sugars, weight, thin skin ,eyes etc.
Den
Liver damage from Flixotide?
I was wondering whether anybody had heard of or experienced liver damage due to use of flixotide? I have been using it for about 2 years and although I have not experienced any liver-related problems, I always worry about liver damage due to long-term drug use.
HEADACHES!!
Hi.. am having a little confusion, and could do with the panel of expert advice!!
for the last week (ish) i've been getting horrid migrane-like headaches which start at about 5pm. did have a patch of migranes when i was very stressed about 5 years ago, and these aren't as painful (thankfully) but nearly.. they're made much worse by light, sound, being vertical, and trying to focus on anything. i came off the pred a few weeks ago after being on for a couple of months, and when i stopped i had a weird thing with my eye, where when i moved it sharply it was painful, but that stopped after a few days.
i did wonder if the pred could have made my eyesight worse, and i've got out of the habit of wearing my glasses, so yesterday i tried wearing them, but no help.
the only other drugs i'm taking are pulmicort 800mcg bd, and slo-phyllin 500mcg bd. i know the theo can give headaches.. could it be that? and if so will it go away, or do i need to change my dose?
sorry about the rambling life history!
justy xxx
I get side effects with my seretide. Dry mouth / hoarsness - which has cleared since I take it just before I clean my teeth, but I have to take bottles of water with me everywhere I go! Also have foot cramps - weird!
Fortunately for me I only had a short course of pred last year - but that caused insommnia - which was the biggest problem
My son has started a few new drugs in the last four weeks and is so hyper it is like living with a clown. He is currently taking Pulmicort 1200mg bd, Oxis 36mg bd, S/c turbutaline 5mg, Slo-phylinne 250mg bd, Montelukast 5mg, Dexmethzone 4mg, Domperidone 20mg tds, Omprizole 20mg bd, Ventolin PRN.
Does any know if the hyper bit will settle once he used to drug or if im stuck living with this nutter 
He is a lively character anyway but constantly telling jokes,laughing for no reason,talking very loud ,leaping about like excited puppy is becoming a bit wearing. The new drugs are working really well so I dont want to stop them but just hoping he will settle soon as he really isnt as funny as he likes to think!
Anyway suggestions (other than gagging him and tying him to chair) would be appreciated.
Julie xx
janet,
I also got horrible foot and leg cramps when I was on seretide. It made me very shaky too, but thankfully it got switched to symbicort. Symbicort is a lot better except that I lose my voice more easily.
julie,
sorry don't know if your son's madness will settle or not but I imagine it might. glad to hear the meds are working well though!
XX Brynne
Stupid steroids and even supider salbutamol
Justy, My eyes are bad too from the prednisolone. It just came on suddenly and i had to have my eyes tested and discovered i needed glasses. But after my optician noticed that my eyesight was very erratic they sent me to the hospital who confirmed that my eyes had steroid damage. basically now i need varifocals (have done since i was 19) and need to have my contact lens prescription changed every few months cos its that bad. i'd say go to your opticians even if it just puts your mind at rest its worth it.
Janet, muscle and joint cramps are a side effect of salbutamol which is in your seretide. its caused by low potassium i get it all the time, and following the first symptoms it took 4 years for them to find out that was what it is, which only occurred cos som brilliant JHO had read a recent paper on the effects of salbutamol on potassium levels. All i can advise is to eat some extra banana's and tomato's to keep your levels high.
Seretide does not contain salbutamol.
Seretide contains fluticasone and serevent.
But Ive had probs with cramps but I take a over 25 meds now so which are causing it ia anyones guess but biggest culprit is my permanent steroid tabs but hopefully when my new steroid tabs get delivered tomorrow I may see some improvement my cons said!
I take 300mg of Quinine tab at night to stop the cramps!
Indian tonic water is also a good sourse of quinine!
apologies my mum's on seretide and said its got salbutamol in so shes misinformed me lol.
The serevent (salmeterol) in seretide is the long acting version of salbutamol. Don't woory about it, its an easy mistake to make.
Side Effects
Since i have started taking Serevent Accuhaler (2 ""sucks"" twice a day), i have begun losing my voice, getting awful cramp in my legs, and a really odd feeling in my chest at night, like a sort of crushing/squeezing that comes in waves. My asthma is much much better through. I am worried about low potassium levels - could this be the cause of the cramps. I'm going to the Doctors soon to discuss it with him. But there's a lot to get through in the few minutes i will have with him. Does anyone else have similar problems?
Joan
I cannot take serevent any more because I was having severe cramps day and night - it is definitely a recognised side effect, my doc recently put me on formoterol instead to see if it was any better but it isn't. I don't believe I have a potassium problem - I eat a banana a day! no dietry changes helped at all.
julie i found a 'cure' for the hyperness with my boys when they were younger. it was called Aikedo on a monday and friday . gymnastics on a tuesday dancing wednesday and sat am, football on a thursday and matches on a sunday. it tired them out a bit but absolutely wore me out. not to mention the dent in my purse. i did cut out all artifical clourings as well. seriuosly though i found my youngest was worse on ventolin and awful on the preds. it was definetly worse when we tried the combination drugs and only settled when he went back on pulmicort am and pm with the servent only at night.
Methotrexate and bad taste in mouth
Is anyone else on methotrexate and finding that it gives them a permanent chemically taste in their mouth? Also some foods have a chemical taste.
It's putting me off my food which I suppose is really no bad thing since I desperately need to lose a few stone!
Anyone else had this experience? Been on it for nearly 4 weeks now - think it will get better with time?
Emily H
Debi, your week sounds like mine! We have early bird sports club 8am mon and weds, hockey tuesday, football weds, judo weds, netball thurs, rugby sunday. Unfortunatly Sean became so unwell he has lost the hyper sessions, instead he is quiet fed up vague looking. Just wish we could find a happy medium.
Julie xx
For EmilyH
I'm not on Methatrexate (my Con is not a fan of it!) but can relate to the 'chemical' taste in the mouth. I have a permanent dry but metallic taste in my mouth from Desloratidine. I have recently taken to swilling with diluted mouthwash through the day, sucking ice cubes, sipping peppermint tea, you name it, tried it. Anything to keep me salivating when I'm not grazing! Some foods just aren't pallatable any more because of it, especially anything vaguely fruity if that makes any sense. Pity as they are the things that tend to make your mouth water!
You are lucky if you just have this side effect, as I did some research on Meth when it was 1st mentioned to me 6 months back, and apparently you can get really sick and migraine-ous with it, although I already have that from the Amino, so ho hum, here we go again.
Anyway just wanted to share some of my dry chemical mouth cures with you!
Sus xx
Thanks Sus..
... I'll try some of the things you suggest.
You're right, if this is the worst side effect I get from the methotrexate I'll consider myself lucky. It's just a bit disconcerting for my husband when he slaves over a delicious meal for me and I screw my face up at the chemical taste of it!
Thanks again
Emily H
Methotrexate side effects
Hi EmilyH. I have only taken Metotrexate once, - have described symptoms and reasons on Cyclosporin thread - but I well remember the chemical sort of taste closely followed by physical throw up sickness. And yes, you will lose weight, because everything tastes of ... nothing, except the bonus of metally sort of taste.
That's one of the reasons why I flatly refuse to try this drug again. Plus long term health concerns, much worse, - in my humble none scientific opinion - than other 'disgusting' drugs like pred.
I well remember when i was taken out to one of the Michelin three star restaurants in an effort by DOH (darling other half) to revive my flagging appetite. What a waste of £93 approx, nine years ago bill of sicked up food. He often 'jokingly' - as men only can - reminds me!
I always say - I'm worth it though!
Mia
xxx
I
I just started symbicort 400/12, been on this strength about 2 weeks and have started getting painful night time cramps (altho they last well into the next day). I'm guessing it is a side effect of the symbicort from what others have said on here before, altho i never got it with the 200/6, anyway, i know tonic water helps as my dad takes it for cramp but i don't like it :o( I have a banana every day anyway so if i do have to go for the tonic water, what could i mix it with to hide the taste? (except bitter lemon cus i don't like that either lol)
thanks
Christine
sore mouth
i went on oral prednisalone short course because my mouth was red raw from high dose steroid inhalers. it took 3 days for my mouth to feel better. but at least i can eat and drink more comfortably now.
If cramps are a problem a Dr can prescribe Quinine tabs (I take them due to so many of my meds causing cramps) or if you can drink it Indian Tonic Water is high in Quinine too!
Sore mouths can be a problem with inhalers!
Especially dry powder ones!
Try gargling and rinsing mouth out well just after taking inhalers!
Inhalers can also cause oral thrush so keep an eye out for symptoms of it!
Emily - Do you take Folic acid with it?
Apparrently (cons explained it when it came up as a posible option) it helps to stop the side efects!
But Methotrexate is a nasty drug and I'd say getting a good anti-sickness drug scripted is an idea as i know peeps on it who do get SICK on it!
You would have to drink the equivilent of 20 tonics (as in a Gin and Tonic) measure to get close to theraputic levels. However, that does not stop me boosting my quinnine tablets with the odd G&T.
Bex
Wheezer, I don't take folic acid... my cons told me that they'd monitor my bloods and if my MCV (size of red blood cells) started to go up, as a sign of folate deficiency, then I could start taking folic acid on the 6 days a week that I don't take the methotrexate. Then my GP told me that taking folic acid might help with the other side effects such as diarrhoea and maybe the nasty taste.
Not sure who to believe... wish they'd make their minds up!
Mia, thank you very much for your answer, which I have only just discovered! You're right, the long term effects of metho do look daunting... potentially lung and liver fibrosis, bone marrow suppression etc.... I suppose the thing is that they're potential (and rare) side effects, whereas the effects I'm getting from the pred are actually happening... must admit, I wouldn't mind loosing some weight on it, but not quite as dramatically as you're describing! Sounds like you were unlucky.... I seem to be lucky so far!
One thing they did tell me... I should avoid contact with people with infectious diseases whilst on it... let me see now, I work in a HOSPITAL, how on earth am I going to do that?! D'OH!
Got up to do more nebs and found some info EmilyH lol
""Methotrexate (Rheumatrex, Trexall) is a chemotherapy drug also considered a DMARD (disease-modifying anti-rheumatic drug) used to treat rheumatoid arthritis, psoriasis, and other autoimmune diseases. Drug information on the indications and side effects of methotrexate, brand names Rheumatrex and Trexall. Folic acid supplementation is highly recommended with methotrexate.""
If your GP will prescribe it I would have the folic acid as it also helps protect against any liver damage from Methotrexate too!
Given one my long term wards as a patient used to be combined resp/skin I have seen many a patient taking it for Psorasis and other things and they ALL have folic acid!
Thanks Wheezer, that's really helpful... must admit I haven't come across that many people on methotrexate for asthma/psorasis/arthritis. I've seen it used as cancer chemotherapy but that's a whole different kettle of fish, MUCH higher doses, daily and IV.
Can't do any harm to take folic acid, can it, it's a pretty benign drug compared to most of the others I'm taking!
Mind you, if the metallic taste does go away, I'm going to start eating again, and I won't be held responsible for the consquences! (If you hear a news story about a 28 year old female exploding and destroying most of the East Midlands, you'll know the pred munchies finally got me!)
My cons wants me on Metho but we have slight problem of IV access for the regular blood tests!
But he said I'd have to take the folic acid too!
Better to prevent probs than trying to treat them he said!
My Con doesn't 'do' the metho trexate route. S'pose I am lucky then.
Wheezer-have you ever had it suggested to you that you could have a port fittted if you have no veins suitable?
Sus - YEP but the consultant and hossie asthma nurse would prefer Hickman line (not enough TRAINED nurses at our local) !
One more central line and consultant is sending me too cardio-thoraic to have hickman done !
20 tonics!!!! 
I have enough problem just trying to drink 1! Tried it with orange squash tonight but tastes like diet orangeade! Put myself back on to beclometasone and serevent (dr said to try if symbicort worked on breathing) but i don't think it was a good idea, have gone from using my relieve once or twice to 4 times so far...n :o/
Christine
This one's bizarre!
My eyelashes have grown really thick over the last few weeks! I've had quite thin hair, eyelashes etc over the last few years, which I've always blamed on medication/illness.
Now for some reason my eyelashes are much thicker! Haven't stopped any tablets recently. I know steroids can make you more hairy but I don't think I've got noticably more hair anywhere else.
I'm not complaining! Saves me trying to apply loads of mascara with shakey hands, it's just a bit strange! Anyone else had this?
Emily H
Emily-not sure about my eyelashes, but I am def more, well, hirsute than before the long term pred. Don't have an issue with it as I am so fair anyway, and it seems to be just my arms and side of my face, plus it is only noticeable to me in certain light! Wanted to post on this before but worried about feeling a bit of a freak, plus, I also wondered if it was some sort of lanugo seeing as I am currently very underweight due to this illness and drug side affects. Can't win!
Sus im exactly the same - i have turned into a yeti on the sides of my face and my arms due to long term pred use but like you am very fair so its not too noticable but my family know about my 'fur' and take the mick!!
My asthma nurse assures me it is a side effect that will dissappear when i stop the steroids. The problem is that i never will coz i need them too much.
So to all the pred yeti's out there - You are not alone!
I also have stupid amount so of fluff on the sides of my face thankfully I am too am a pure blonde so you have to look really hard to see it. I am pretending it does not exist until someone (family or else) points comments on it. So far no-one has noticed Or maybe they are just not saying anything, now I am worried.
Bex
Gee I can't believe that it is actually quite usual, and that those of us with it are all real fairies too. I have mentioned it to a couple of clinic friends of mine, both of whom are dark haired, and neither of them have it. It is actually my only pred side affect, no moon face, only extreme weightloss, no hunger munchies, no water retention, no mood swings! etc, so I guess I can't complain really compared with most other people.
Maybe it''s keeping me warm in this wretched non summer weather of ours!
It's all coming out...thanks Em, Sus, Bex and Kym. I have been keeping quiet too. I am naturally v dark haired and have noticed the increase, as has my bf who assures me that only he would ever notice. Mainly noticed extra hair on arms and sides of face2. Never really had a prob with
side effects until past few months but they just seem to keep coming! Having spot issues (have always had v clear skin) and my moon face is v evident.
Thanks for making me realise i'm not alone!
xx
With high doses of pred my skin did the opposite and got very dry and flaky but not the usual eczema I sometimes get. Also my hair went mad, frizzy and again, very dry, and on the odd occasion when I have managed a manicure, the beautician has said my nails had become very flaky and soft. Now I have got my dose right down, (see pred doseage thread!) all these side effects have cleared up.
However, becuase I am currently being loaded full of long chain triglycerides and fatty supplements, my skin is definitely a becoming oilier again.
Another pred side effect for me, is extremely sweaty armpits of the Tony Blair type. That, personally, although not BO! is the most horrendously embarassing of all. And always feeling boiling hot but never running a temperature.
Maddening isn't it. This is not just a lung disease, it is a total body phenomenon.
I agree with the whole body phenomenem. I have put on 2 stones in weight as well as the 'fur' due to munchies!! I also have just started with the swollen ankles and legs so my con put me on water tablets which make me pee every 5 mins - which was not so bad when i was in costa as the toilet was not too far from my bed but now im home i have to tackle the demon stairs!
I also get pins and needles in my feet but - does anyone else suffer from this?
Kym
Apparently Amino (slo-phyllin or phyllocontin) also has a side effect of being diuretic sadly it does not seem to do anything to get rid of the dreaded pred fluid. I only found out when a nurse on ITU me and it maybe that only high dosages have any real effect.
Bex
I get the diuretic effect with amino, only a little with oral but quite a pronounced effect with IV. It's a standing joke in HDU that I will be asking for the commode every few minutes! It's really annoying as it's usually most obvious when I'm too breathless to transfer very easily - just means more hard work at a time when I really don't need it.
Sadly it doesn't seem to counteract the swollen ankles that I get from the pred. My husband also kindly pointed out to me that I'm getting a bit of a buffalo hump - or 'intra-scapular fat pad' as I prefer to call it! So nice of our loved ones to point these things out to us!
EmilyH with you all the way on the old ""get me a commode"" thing in HDU! Was worse on ITU cos they really are not geared up for people who insist on getting out of bed and unless I am well out of it (sedated and vented) no-one is cathertising me! I simply ""dont do bedpans"" at all it just does not happen for me. Watcing me slide out of bed and onto the commode with an IV in each foot is apparently amusing.
Bex
Bex, the first thing I say when I wake up, after writing/signing 'get that tube out of my throat!' is always a demand to remove the catheter! Can't use bedpans either - I always end up spilling them, and having to go through the trauma and humiliation of having the sheets changed! I have been known to throw myself from bed to commode when really unable to stand. Men don't know how lucky they are to side-step that particular dilemma!
I know what you mean about ICU not being geared up for conscious, talking, walking patients - took them many minutes to find the commode last time I was in. I made a proper nuisance of myself last time I was in - my husband overheard two of the nurses saying that they wished I'd been tubed. Not nice to hear - and it wouldn't helped them, I'm just as much of a pain when I've just been extubated!
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