Taste disturbance with prednisone?

[Calmcat]

Hi. I’ve been put on prednisone for nearly two weeks now (40mg daily). I have a constant bitter taste in my mouth - could this be the prednisone? Also I have - painful trapped wind,, diarrhoea and mild nausea. I was put on prednisone after a flare up due to a cold virus so just wondering if theses symptoms are more likely to be the virus or the prednisone?

[Minushabens]

I don't know if this is the same thing...maybe not...but from the time all my medication changed (introducing regular steroids plus anti-fungals, new inhalers, etc.) my tastes & food preferences changed a lot. I was always a chocoholic...could eat the stuff all day. Nowadays I have no interest really in it, but feel cravings for crisps & nuts all the time.

It's not exactly what you describe, but I guess the meds we often end up on can & do mess with lots of aspects of our body, including taste.

[Calmcat in reply to Minushabens]

Thanks - very interesting- makes sense 😊

[Poobah]

Hi Calmat. I always have to brush my teeth and gargle after prednisone as it's such a bitter med. When I was a kid I couldn't even keep them down. For some they're not great for the tummy but as they are only taken for a while and they are so good at treating asthma flare ups I put up with the side effects.

Haven't had wind or diarrhea from prednisone so it may be worth having a chat with your pharmacist - they may just have suggestion to combat those side effects.

[Calmcat in reply to Poobah]

Thanks Poobah

They are bitter to swallow but my bitterness stays after teeth and food and I can even taste it in the mucus I cough up. As you say though it’s worth putting up with. I’ve been on 40mg three weeks now - tried going down to 30mg but got worse so was put up again 😕

[Poobah in reply to Calmcat]

I've even tried munching fresh parsley to improve the taste in my mouth, but the effect is fleeting.

I'm just about to finish a course of steroids but in trepidation of the symptoms returning. In the past a course would have done the trick but these days it seems it takes more meds to control asthma. I do wonder about how pollution has affected asthma control in this country.

[Calmcat in reply to Poobah]

Yes I seem to need more meds each year. Only diagnosed 5 years ago (although they’re queuing the diagnosis now as I don’t seem to behave typically!) but each year I’ve had more flare ups (4 in the last 12 months)...pollution definitely affects me - I dread the school run in thick traffic! Had my first A&E experience yesterday and first CT scan today (checking for clot on lungs - thankfully all clear).

Hope finishing the steroids goes ok. What are your thoughts on tapering? I’ve had conflicting advice- one GP said try going down to 30mg but when that made it worse We went back to 40mg. Then the practice specialist said we were meant to go down in steps of 5mg. But the respiratory team at Emergency Assessment Unit today said to do another 5days at 40mg then stop dead - very confusing!

[Poobah in reply to Calmcat]

I agree with you, it's confusing. And I have had specialists on same team tell me different things. It doesn't fill one with confidence.

Over the years there's been a shift in prescribing prednisone. Tapering was always done and courses lasted longer as it was considered dangerous to suddenly stop a steroid course. I'm not exactly sure when that thinking changed, but suddenly courses were high in dosage and short, as few as five days but usually around 7 days in duration.

But despite the change in approach what is important is for the doctor to say what the expectation should be and what the patient should do if recovery expectations aren't met. If the course hasn't fully addressed the flare up then the patient needs access to continuing treatment (no waiting).

If a pred course has to continue beyond 2 weeks then the doctor will probably try and reduce the daily dose to a point where the asthma is still controlled with the expectation of ending the treatment. Any reduction I would expect to be gradual & would balk at going down in 10mg steps. Stepping off a cliff!

If the patient can't achieve the planned tapering then I would expect the doctor to review the other asthma treatment plus review what else may be going on. If you can't taper off the pred go back to the relevant doctor.

My asthma nurse has finally agreed that I can have a steroid only inhaler in addition to my combo inhaler, starting it in overlap with the pred. Starting high and tapering to a dose that can control my asthma. She's not convinced, but as an asthmatic herself she knows how individualistic asthma can be and is gracious enough to let me try. I explained that I am happy to take the combo twice a day but not use it in higher doses as it exacerbates my asthma, like a vicious circle. I don't think I tolerate the long acting bronchidilator very well.

We are all different and learning what suits us is part of the trial and error.

[Calmcat in reply to Poobah]

Interesting about not tolerating the long acting bronchodilator- i didn’t think about that as a possibility- I was put on Fostair (from Clenil) in November. It didn’t seem to make any improvement (I should probably have gone back then) but I waited until after Christmas - since January I’ve been worse than ever...hmmm!

Prior to starting my rescue pack of pred I added in some extra Clenil that I had left over. I was told off for that today- I’ve been told to go up to 2 puffs 4 times a day if the Fostair. I guess we’ll see if I tolerate it. Scariest of all I’ve been told ‘no ventolin at all’

Re the steroids that’s good advice- all three doctors I spoke to only discussed duration but nothing about recovery expectations - I must get that clarified.

[Poobah in reply to Calmcat]

Oh, the "no Ventolin" message! I was told that last May and expected to use my Symbicourt as the reliever. I really stuck to that for months but everything just got worse. Saw another consultant in November and was told "try this triple inhaler (Trelegy) instead of Symbicourt and Eklira Genuair ( LAMA)". Because the new triple inhaler included the LAMA med it couldn't be used as a reliever so I asked the consultant about that. "Use your Ventolin like you normally do". But I thought I couldn't use my Ventolin? "Who told you that?" No kidding.

We also discussed my high blood pressure (now something I have thanks to Spiriva). I explained how much better my BP was now that I have Eklira Genuair instead of Spiriva. But it turns out new triple inhaler has no Eklira in it but something that affects blood pressure. Despair.

That's where asthma nurse comes to my rescue. She really listened to me regarding efficacy of my meds and, importantly, the side effects. So no more Trelegy or Symbicourt. Now on Fostair, Becotide, Eklira Genuair but also Ventolin if required. Early days but I'm hopeful.

Because I tried the Symbicourt on increased dosage plus as a reliever, resulting in poorly controlled asthma, I knew it had to be something in the med. I did some research and read about the history of this type of inhaler. Originally, long acting bronchidilator (LABA) inhalers were created and prescribed. I even had one as it was new and my consultant thought it was worth trying. I had very controlled asthma at the time. Within no time at all I couldn't even walk across the room. I asked my GP if I could stop the new inhaler but he was reluctant as the consultant had prescribed it. I stopped it anyhow and recovered within days. Consultant was OK with that but thought the flare up was a coincidence.

About 18 months later I'm reading the newspaper about a certain inhaler being pulled by the American FDA for the use in children because of asthma related deaths in both children and adults. It was the inhaler that had made me so poorly.

Fast forward quite a few years to 2020. It turns out that the assumption was that patients had stopped taking their steroid inhaler because the LABA was so good. It couldn't possibly be the LABA making patients ill. This allowed the makers to add steroids to the LABA, creating the combination inhaler. The FDA were satisfied that the steroids would address any problems as drug trials looked good.

What I should make clear is that many asthmatics strive on LABA and the combo inhalers. But the problem is that a few don't or it can't be tolerated if too much is taken. That's how individualistic asthma is. But the key is the patient has to be listened to.

The last consultant I saw told me it was the steroids that I didn't respond well to. 🤔

Trial and error but always monitor, follow up and review. Listen to the patient; patient - speak up.

I do hope Fostair works really well for you. All the best.

[Calmcat in reply to Poobah]

Wow. Scary. I just came across this :

erj.ersjournals.com/content...

Which I guess is the study you meant about LABA s?

It seems to implicate Formoterol in Fostair aswell. Tempted to jack it and go back to Clenil and ventolin coz although it wasn’t perfect I’ve never been this bad before. Do you have any more details about the asthma related deaths with LABAs? Was there a lag time before people started getting worse? Sometimes I just feel expermentd on by big drug companies!

I’m glad you sorted the blood pressure thing- they said they’d put me on spiriva respimat when I was in hospital yesterday but by discharge time they seemed to have changed their minds.

Glad you’re asthma nurse really listens to you and that you’re hopeful about the new combo. I might have to see if I can chat up my asthma nurse a bit - I never thought it would be so political - the more I learn on this forum the more I realise I have to wise up and speak up. Thanks so much for sharing.

[Poobah in reply to Calmcat]

Unfortunately, when I discovered the issue with LABAs I had no Internet - it was the 90s. If I hadn't read it in the newspaper I would have had no idea. But I then assumed I just had to look out for the med I had been on and just avoid that. That was naive and when I was prescribed Symbicourt it didn't dawn on me it contained a similar med.

Having the steroids combined with the LABA definitely masks the effects. I know that if I take minimal amounts then it's OK. I'm trying Fostair to see if it's more tolerable than Symbicourt but having a Becotide inhaler is the way I can take more inhaled steroid without taking too much LABA.

My friend has used Symbicourt for years and it really suits them, so it's clear it's horses for courses. Just because I have an issue with LABAs I know many patients don't and have thrived on them.

I don't feel as patients we're utilised as much as we could be. If the culture regarding honest feedback about medications was changed it would actually assist in more accurate prescribing. We would know that only a certain percentage of patients respond well to each medication and wouldn't have to battle on an individual basis all the time to convince our doctor/nurse.

I know that the aim of drug companies is to enhance DNA & genetic science to create individual medication cocktails for each individual; highly targeted prescribing. This sounds great until one realises that genetic science should include engineering to eradicate the duff genes that lead to illness and disease. But the latter doesn't make money for the company over the lifetime of the patient.

[Calmcat in reply to Poobah]

It’s sad that drug companies target all their research in areas where they can make the most money. If they actually came up with a cure for asthma they’d loose billions! Don’t know much about DNA & genetic science but it sounds interesting - didn’t even think about the genetic side of asthma till now.

Went rogue tonight and used my ventolin 🤣- feeling better! Might even dig out the old Clenil and swap it out for the Fostair for a few days just to test if it is the problem.

Feeling a bit more confident about exploring what works best for me.

Thanks for all the inspiration.

[Poobah in reply to Calmcat]

Go for it!! 😁

[Ellierosebmx]

Hey

Steroids have always given me a horrible feeling mouth sore and sensitive and change in taste.

This time round I've had horrible stomach side effects huge increase in hunger and thirst! And that's after only a short 10 day course.

[Calmcat in reply to Ellierosebmx]

Thanks- that sounds very similar to me - I’m really getting the hungry thing too - especially for high fat high sugar stuff.

[Ellierosebmx in reply to Calmcat]

Yeah me too but then once I've eaten it I feel worse!

[Calmcat in reply to Ellierosebmx]

🤣

[Calmcat in reply to Calmcat]

I’m trying to stick on the healthy stuff coz i will eat that too and I know I’ll feel better when I do but the cravings seem harder to resist- I’m also very irritable. Prednisone messes with your blood sugars i think so I guess it’s all to do with that.

[Ellierosebmx in reply to Calmcat]

Yeah me too! Oh the Joy's!