I am stopping all medication - Asthma UK communi...

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I am stopping all medication

Wheesy profile image

I have decided to stop all my medication as from today because all of them are destroying the whole of my body.. Every medication have their side effects and I suffer with everyone. I have ended up with moon face but on a lot of weight. Doctors are saying different things, one says I have got x number of problems and then another says that I do not.

They have ruined my body my health and other things

Sod them I will start from scratch and take my chances.

AUK Warning:

If reading this post please don't be tempted to stop asthma medications without consulting with a health care professional who knows your health history . This could be very dangerous.

39 Replies

You need to think very carefully about this Wheesy. Maybe just reduce down and see how you get on?

Whatever you do, please make sure you have your blue inhaler with you at all times.

I had a life threatening attack about 2 years ago, I did not have any inhalers as I had not been diagnosed, not ever having an attack, and never having experienced any breathing problems that caused me any concern.

Believe me, you don’t want to go there. You know, instinctively, that if the paramedics don’t get to you quickly, you won’t be around to tell the tale.

Wheesy profile image
Wheesy in reply to Troilus

The paramedics just do their One tick boxes. Nothing works they have stopped Ventolin, just keep pump me full of steroid. One medic says one thing and then another tells me a different story. I am going to go private but in the start I wont tell them what is the matter and let them sort it out.

Wheesy profile image
Wheesy in reply to Wheesy

Sorry I forgot to say thanks for your concern, I will take what you say very seriously before making my final decision

stones93 profile image
stones93 in reply to Wheesy

Please don't stop all your medicines, especially the steroids, it could be very serious for you.Find a doctor you trust and discuss it all with them first.

Troilus profile image
Troilus in reply to Wheesy

All I can say Wheesy is that I have never been more pleased to see a paramedic than I was that morning. He arrived on a motor bike, and basically saved my life. He put me on a nebuliser, took an ecg and put out a call for an ambulance to take me to hospital. My oxygen levels were dangerously low and the lack of oxygen put a tremendous strain on my heart. I had to be admitted to have my heart monitored for 48 hrs, heart scan and angiogram. The cardiologist said he could not let me walk about as I was at risk of a heart attack. I am told I have the heart rhythm of someone who has had a heart attack and this will never return to normal, even though all tests came back fine.I am not trying to scare you, but you really, really must be careful. It might be a good idea to wait until you have been on the lower dose of prednisone before you make any decisions. It can mess up your emotions, while you are on it and even for a while after you have reduced the dose or stopped.

Lysistrata profile image
LysistrataCommunity Ambassador

Apart from the danger Troilus mentions re asthma meds, if you are on long-term steroids you cannot just stop them cold turkey. You will go into adrenal crisis if you do.

I have taken the steroids into consideration vut I have been on 40mg for 4 weeks but on Friday on discharge from hospital the Dr, said go back to 1 tablet 5mg from Saturday. I am getting so many conflicts and the only sense I am getting is from this web site.At least my wife looks after me with great love and affection, and my 2 girls are always there for me, the youngest turned up with Maya today as a surprize visit, she has traveled from Gateshead to Doncaster.

Hanne62 profile image
Hanne62 in reply to Wheesy

Well then, surely you owe it to your lovely wife and daughters not to do anything stupid. Imagine how they’d feel if you had a fatal attack. How would YOU feel if one of them risked their health like this? Think about them, and take care with your meds for their sake, if not for your own.

If you are in England private respiratory is non existent at present. They aren’t seeing people due to demands of Covid in hospitals so are doing all their hours in public health system.

Please follow the advice people have already given.

I get the sense you have not written and posted this looking for advice, but more as a matter of fact.However as far as I can see you have been given very wise advice.

Your current plan could turn out to be fatal. You have spoken affectionately about your family maybe speak to them about the very serious outcome your proposed plan could have. Are your loved ones in agreement with your plan and prepared for the most serious of outcomes ? Wishing you well.

Hi .... I’ve been on long term pred, I would be very careful stopping suddenly , the body will simply crash .. I hope things work out for you

You sound like you’ve just had enough of everything, which is an awful way to feel. Don’t just stop them though you could cause long lasting health issues on top of your current ones or worse.

Have you been referred to the respiratory team by your doctors? I waited from February for an appointment. They are now finally doing tests which will then have my meds amended. But more than two lots of steroids and you should be.

The prednisone side effects are awful. But if you are being reduced to 5mg that should subside. My latest lot of steroids had me feeling very agitated.

A side effect can also be depression and mental health issues.

If you’ve had a months worth of pred they should be referring you.

I’ve referred myself to physio for breathing exercises to hope that helps as a and e just send me away during my breathless attacks, which lead to time off work. But drs say go to a and e with symptoms.

It’s really frustrating as I would prefer no symptoms at all but now I’m with the respiratory team I feel I should get better treatment.

My asthma nurse kept threatening to refer me after the next flaire up. It was every other month last year. But ask them about referral as the gp can only give you limited meds it’s the ares clinic that prescribe add on meds for you which then should stop the need for steroids, hopefully

Wheesy profile image
Wheesy in reply to Leigh2305

I have had a specialist for 2 years, who now is stook in a rut No Ventolin No nebuliser No oxygen just cope with the problems. Says see you in 8 weeks then I hear nothing. Makes no wonder I feel like I do along with other fellow sufferers everything is blamed on Corona Virus as an excuse

Things at the moment with regards to treatment from my respiratory specialist is nothing. After an admission to hospital lasting over 2 weeks the specialist said that she would see me in 8 weeks time it is now 15 weeks and still no appointment. I have taken all the advise onboard and thank everyone for their concern and frankness with their responses, witch are all very valuable to me.

THANK YOU ALL VERY MUCH

Do not go if of steroids suddenly you will wish that you hadn’t

There is more to this than pills. You may not get a specialist respiratory consultant privately, but if I were you, I’d try. Also, talk to the nurse at asthmauk. You need time to explain how you feel with someone with the time to listen and a knowledge of your case. As a first step, write it all in a detailed, coherent account. You are so upset by what’s happened, you need space and support to move forward. If you still want to reduce your medication, you’ll have the necessary knowledge to do so safely. All good wishes to you and your family.

Sorry to hear this. I had 6 months of problems last year. I saw a private respiratory chap on zoom and in the end, although it took a time, he got me back to my near normal. As others said, be careful stopping meds…especially if u have been on steroids for a while..u have to reduce slowly.I would add that I was diagnosed with Alpha 1 Antitrypsen condition several years ago. ..it can affect the lungs.This is fairly rare but common and unfortunately UK doctors dont know much about it. Worth getting a blood test for that, especially if asthma, COPD is in your family history.

Stay strong.

So sorry to hear you are feeling this desperate. I can totally relate having had severe asthma over the last year and finally being diagnosed with EGPA. I'm scared of the drugs side effects but know i need them to keep me alive. I'm wondering if you could be eligible for biologics. My understanding is that these work very well for severe asthmatics and have far less side effects than the prednisolone. Apologies if you are already on these.

Wheesy profile image
Wheesy in reply to CharlieLondon

Thanks for your reply

I was on Nucala for 10months but it made me very ill. Awaiting for my resp.team to make a decision about another biologic.

CharlieLondon profile image
CharlieLondon in reply to Wheesy

oh how frustrating, but yes there are quite a few others to try so hopefully one will be just right for you. I have heard a lot do very well on them

Trust me. I k ow how u feel. I did the same and ended up very ill. I had the moon face and put on 3st. After 2 year started biologics and everything is under control as long as I keep having the injections. Stopping the steroids can make u have adrenal failure and u don’t want that coz it will bring another set of problems. Keep on at ur Gp or consultant.

What ever you do, do not stop the steroids suddenly, I was on 10mg for 3 months then stopped suddenly, it messed with my adrenal glands. You will have more to worry about than asthma if you do. If you've been on 40mg for 4 weeks my advice would be drop 5mg every 3 days. This is only advice as it's better than just stopping my doctor told me this..

I understand your frustration. Wishing you all the best in your search for answers.

Please do not stop, Wheesy. In my experience, it's better to be overweight and to have a moonface than to be feeling that you are about to die (pardon my bluntness). One can still live a fulfilling life, learn new things to enjoy etc, despite the hardship of the side effects.

I was winning running, cycling, and nordic skiing races before the asthma, and that used to take all of my free time. Now I can code, read, build things at home with my wife etc.

I’m no expert here but after a very nasty virus I was put on antibiotics and steroids until the virus cleared and I can tell you I noticed the steroids made me very angry and depressed. SO and I say it in big letters it’s the drug not how you really are SO please find a decent quack who gives you good advice and use inhalers with steroids if you can as they will protect your lungs and hopefully prevent your ever needing them in tablet form again . Fingers crossed . PS do you also take Montelukas which is brilliant at assisting your breathing but again can affect some people emotionally so monitor yourself as you are your best judge. Good luck stay well and remember it’s the drug not you it’s common knowledge and your gp. should know better

PS . If you read the leaflet it does state not to be taken by depressives so if you do have this tendency do tell the nit he shouldn’t prescribe them to you in the first place 👍🏻

Bevvy profile image
Bevvy in reply to Dizzart

I have chronic depression (& take medications for this) and took montelukast for a number of years without any issues to mood. Not everyone with depression will be affected negatively. I have since discontinued the medication but that was due to suddenly have difficulty due to horrific nightmares. There are “get out clauses” for most medications and if we worried about all potential side effects wouldn’t take anything! In my opinion I always try a medication that gp / consultant wants me to try but if I have any negative experience, which is usually quite quickly, I will then stop medication and advise doctors.

Ts777 profile image
Ts777 in reply to Dizzart

I’ve have steroids too, many times over the years. And am susceptible to depression.

No bad effects here either.

Hi Wheesy,I understand how frustrating it is when nothing seems to work and your always on steroids and the dose is up and down. But as your body is used to steroids it stops making the coitersone. If you stop suddenly it can be very dangerous but you can get your doctor to help by giving you monthly blood test. Please take care and I hope you get your answers. Sorry about spellings im not great.

Dizzart profile image
Dizzart in reply to fallon12

I wish I could have been more help, do hope you find something very much . Keep trying XX

Do wish I could have been more help do hope you find something xx

I stopped most meds with similar frustration but I did it WITH the support and guidance of my GP. I had previously been told I was steroid resistant so had my pred stopped without tapering and knocked out my adrenal glands completely so had to start taking hydrocortisone to replace the cortisol my body had stopped producing! Thankfully with support of an excellent clinician I did eventually (after many months of supportive adrenal measures) manage to get my adrenals to start producing cortisol again but it was a close thing.

I too got annoyed with continual adding in of meds by docs to counteract the side effects of one, only to add to the issues and lack of clarity on moving diagnoses forward, but please take medical advice on the best order and best way for each med. some can be stopped but to allow your body to adjust and manage safely some very definitely have to be tapered and the order of stopping/lowering can also be key.

I did eventually manage to get down to very bare minimum to keep safe.

I wish you well in your quest, but please seek guidance from a doc/pharmacist you trust and please keep safe for your and your family’s sake x

Wheesy, I am so sorry to hear how angry and frustrated you are at this condition, the meds, the docs. I have been in your shoes. Many of us have. I can only tell you what I have done for myself; perhaps it will help you in thinking about your situation.

I researched each of my medications -- benefits, contraindications, side effects, and especially what might happen if I stopped suddenly. Going cold turkey on prednisone, particularly after high dosage, is never wise; a slow tapering down is a better idea.

I had to take a good, hard look at my foods and supplements; there are many that hinder and many that help. I forced myself to participate in some sort of physical movement throughout the day, such as walking; consider what will work for you. It was hard, but I dug deep to find gratitude and joy in what I have, especially family -- and time. More difficult still, I did not give up searching for a better doc/NP match; this tried my patience beyond words.

Importantly, I decided to write down all of my plans (meds, foods, supplements, exercise, mental outlook), starting with what I could do that very day to help myself, then what I wanted to do the first week, then the second week, and so on. Having a PLAN, no matter how slow and incremental, can be a huge psychological boost.

By all means, monitor your breathing and keep your rescue inhaler at hand. Do not ignore your individual warning signs and flow-meter numbers. Do not toss away the meds; they may be needed temporarily as you progress. Do not think you've failed if you must fall back on a med or two occasionally. This is normal.

These are all things that helped me in my journey toward better health. I wish you all the best. Keep us posted.

Thanks very much for this very useful information. I have already made a plan to consult ma with my GP, Asthma nurses and most important, to request an appointment with my specialist who deals with mw when in hospital for his verdict,

I can’t write this fast enough after reading so much and I need to say “please “don’t stop the steroids, I was like you I stopped all medication on the Wednesday and Friday night I collapsed massive attack and I am lucky to be here, I’ve had this illness 35 years and everyday is a battle but I’m still here. It really is a game of living within your limits on the day. Take care but stay with us.

Claire_AUK profile image
Claire_AUKPartner

Hi Wheesy,I am so sorry to hear how frustrated you are.

As the others have said here, please don't stop anything without discussing with your health care provider, it could be really dangerous for you.

We would love to chat to you on the helpline (0300 2225800 option 3 for nurses) as I am sure we can offer you some safe practical advice.

Best wishes

Claire

Also may I just take this opportunity to highlight what a wonderful supportive forum this is, the replies here have been so sensible, supportive and kind - thank you everyone

☺️

Wheesy profile image
Wheesy in reply to Claire_AUK

Many thanks for your concern After a lengthy conversation with one of your colleagues I now feel much better and how to carry on especially with questions for specialists and doctors

Naomi_AUK profile image
Naomi_AUKAdministrator

Great news!

Do not stop your meds. I have had nucala and Fasenra - neither produced the hoped for results. I am now waiting to go on xolair. So after six years of hell I am back to the pred - to be honest I have never really been off them - I know about the weight gain and low mood but if there is nothing else what can you do? Just keep on going.

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