Declining a medication

[inlotsofknots]

Hi there
Does anyone have any experience in declining to use a medication due to side effects?

These weren't presented to me when the medication was prescribed, but due to vague comments from both the GP and pharmacist, I did my own research and have decided I don't want to try this course of treatment.

Does anyone have any advice as to how I can word this for the GP without being accused of being unhelpful?

I should add that my child's quality of life is being affected by his issue, but this drug is not a 'definitely will cure' item, it was more a 'we can try this' and life isn't threatened in any way.

This feels like a bit of a mess. The GP either doesn't know the extent of side effects mentioned online, or doesn't believe them. In America parents are counselled prior to prescription on these, and there is now even a warning on the box. This research doesn't seem to have made it here to the UK (not on the NHS website at least) despite there being a lot online (from reputable sources!)

The medication is montelukast by the way. My child gets a lot of coughs. They start virally, but are always pretty relentless. He also has hay fever. The GP suggested we try this. My child is 7 and the side effects I'm referring to are psychiatric, sleep and can occur on commencement, withdrawal and persist after the drug has been stopped. I know this is widely prescribed and I'm sure it has an excellent place for known asthmatics, but I'm not sure my child's need warrants the risk.

I think one thing you need to look at is what the risk is.

Is it 1 time in 10 in which case it's a huge risk and I'd avoid it.
Or 1 time in 10 000 000, which is low risk.

I do tend to take America's medicine/research with a little pinch of salt because so much is guided by money rather than facts. Within one medical issue I know quite a lot about, I've seen so much blatant false information from American doctors - but what they advise gives them the best chance of money from the insurance system. Cold but true.

So I've looked up the NICE guidelines and they have:

Common or very common

Diarrhoea; fever; gastrointestinal discomfort; headache; nausea; skin reactions; upper respiratory tract infection; vomiting

Uncommon

Akathisia; anxiety; arthralgia; asthenia; behaviour abnormal; depression; dizziness; drowsiness; dry mouth; haemorrhage; irritability; malaise; muscle complaints; oedema; seizure; sensation abnormal; sleep disorders

Rare or very rare

Angioedema; concentration impaired; disorientation; eosinophilic granulomatosis with polyangiitis; erythema nodosum; hallucination; hepatic disorders; memory loss; palpitations; psychiatric disorders; pulmonary eosinophilia; speech disorder; suicidal behaviours; tremor

Side-effects, further information

Eosinophilic granulomatosis with polyangiitis (Churg-Strauss syndrome) has occurred very rarely in association with the use of montelukast; in many of the reported cases the reaction followed the reduction or withdrawal of oral corticosteroid therapy. Prescribers should be alert to the development of eosinophilia, vasculitic rash, worsening pulmonary symptoms, cardiac complications, or peripheral neuropathy.

None of what you say is in the "common" (1 in 10 to 1 in 100) section. There are some in the "uncommon" (1 in 100 to 1 in 1000), which would worry me, but if you keep an eye out then you can probably mitigate the risk to a good amount.
The ones you are really concerned about fall in the "rare" (1 in 1000 to 1 in 10 000) or very rare (less common than 1 in 10 000) area.

I think I'd go back to the GP and ask if they can suggest something else because you're concerned about the side effects. They will probably try to reassure you.
Then you have a choice. You can start the course, it should be a low dose which should reduce the risk, and keep an eye out. Or you can refuse it, and may not get anything else. You have to decide the risk for your child.

eg. I wouldn't worry about it for dd1, because she would talk to me and doesn't have a tendency for any of those. I could also talk to her about the side effects without her worrying about if she had them.

I wouldn't touch it with a barge pole for dd2, who already has significant anxiety and has a tendency towards depression and dizziness. If I talked about side effects then I can guarantee she'd get 90% of them before the medicine had hit her stomach, and I can also say from experience that if depression hits, she masks very well until it's too much. It would be far too great a risk for her.

Ds I would consider. He has a nasty habit of when he is ill/gets side effects, he really is ill/has bad side effects. So that would make me nervous. However I could talk to him about the side effects and looking out for them, and I think he'd be fine (would probably tell me that he needs a cash rise in his allowance to mitigate them 😆).
I know if I gave him the choice, he'd probably choose not to take it, because he avoids medical intervention generally, but I would show him the side effects, point out the benefits, and say if he changes his mind (which he might do if the cough got too annoying) then to come back.

with medication it's always a balance between effects and side effects.

asthma sucks but 'luckily' there are many treatment options.
speak to the asthma nurse.

you need to find the trigger and eliminate as much as possible (allergies?).

all the best!

My son has mild asthma. However he gets very wheezy whenever he has a cold. I give him montelukast at the first sign of a viral infection and it works wonders, dramatically cutting down on salbutamol inhaler. After 3 days his cold is usually much better so we stop montelukast. We have been using montelukast like this for the last 10 years, I never noticed unusual or worrying effects. My son much prefers one chewy tablet to endless puffs on the inhaler

Further to the earlier message... we were told "to try " montelukast. Apparently it doesn't work for every child. It does wonders to my son's viral wheeze

Setting aside the ins and outs of the specific medication, if you say "I've done some research and I don't think this is for us" the GP is either going to think:

Well, they've thought about it and they don't want that, just as long as they don't give me a hard time about it later.

OR

I think there are really limited alternatives and I'm worried about this child's wheeze control, better refer them to paediatric asthma services so they can advise them better.

OR

These people seem like more work than I can get through in 7 minutes, I'd much rather an asthma paediatrician had these conversations with them.

Depending on what they are like, you are like, and the actual clinical situation with your child. Pathway 2/3 lead to you chatting with a paediatrician down the line. Nobody is likely to give you hard time in any of these.

the neuropsychiatric risks are in the 'important safety information' bit of the section for montelukast in the BNF and has been for several years. If you find he's having side effects then discuss it with the GP so between you you can weigh up the risks/benefits of continuing on it vs coming off/trying something else.

Both my children 4 and 2 have breathing issues. My daughter 2 has asthma and montelukast has been amazing for her instead of constantly needing her blue and brown inhaler that gives her worse side effects. 3 days of montelukast and she's sorted rather than weeks and weeks of her inhaler, wheezing and coughing. No side effects from it either.

My son had a horrendous cough for 8 weeks that wasn't going away so the GP offered it or an inhaler. He had 2 days of montelukast and it was gone and he was back to normal. No side effects or anything.

Thanks everyone

My child doesn't have asthma, doesn't even wheeze really, just has very lingering post viral coughs, which last longer than other children and get him down. Having done my research, I'm definitely not going to give it to him. I totally understand that it's a risk vs benefits situation, which I've now done, and on measure, I don't think it's worth the risk, especially as the side effects don't always simply stop if you stop the medication. If they had breathing issues, wheezing or severe asthma like some of you have mentioned, then it would of course be a different decision.

As the doctor didn't advise me of these side effects at the time, I couldn't really make an informed decision. Hopefully they are understanding and we either try something else or maybe wait and hope they grow out of it. The doctor did all this over the phone, my child hasn't been examined, had a chest listened to or anything. I asked for an appmt but was only offered a telephone consultations 2 weeks later,

I would not take the risk for just a cough. My teen has post viral coughs since he had whooping cough as a child. I wouldn't risk psychiatric side effects for just an annoying cough.

@Kalevala I'm not going to, although it is a shame if we can't find anything to help as it does impact my child's life, rather than to just simply be annoying. I hope they grow out of it very soon, I guess that's the best case scenario but I wanted to seek the GPs opinion to see if anything could be done.

Have you discussed cough variant asthma? I have no normal asthma symptoms, but every cold sets me off with a lingering cough that prevents sleep and is awful.

Montelukaust does really help, but having the correct inhaler is vital. I have symbicort I use every day, I still get coughs but nowhere near as bad.

@grumpypedestrian I'm glad you've found a treatment that works. Cough variant asthma was mentioned, although it is only post virally that the cough is a big issue. I'm hoping there is an inhaler we can try instead

Mine flares up (get my cough) after a cold or viral infection. The inhaler is called symbicort, it’s one of those inhalers that need long term use to be effective.

It's tricky
I'm on Xolair which has a black box warning and I had to be monitored for 2hrs after the first injection. In America you also have to carry 2 epipens on it
I was pretty terrified. My only side effect is a mild headache

But my condition was ruining my life so I felt I had to try it

I don’t know if this makes a difference, but when we were in America, I had to have my dd seen by a doctor. The tests she had (indicated by symptoms) and treatment (indicated by on the spot test results) were suggested but totally up to me if we went ahead or not. It was very different to NHS where the doctor tells you the tests and treatment (and, yes, you have a right to say no or ask questions, but the responsibility is more on them). With the responsibility being far more swung towards the patient’s parent or patient, I’m not surprised that they need counselling before hand. My dd had a clearly treatable infection, but I still had to say which tests I wanted and whether I wanted antibiotics, anti-emetics etc and that felt quite a big choice. With a more complex diagnosis or less clear treatment pathways, I can absolutely see that a parent would need support on whether to agree to it or not.

Equally, I’d just have a frank conversation with the doctor who suggested it and ask for a consultant referral if it’s the GP and you don’t feel they have enough experience. I would say the NHS line tends to be that medications aren’t offered without clear need. There are exceptions to this and newer medications with less evidence etc but usually it’s about why it’s being offered and so on. In this case, the fact it impacts your child’s life (potentially weight etc) is the big part and so a medication that has a chance of helping is worth offering. It may be they have no side effects but I’d definitely discuss it fully with a doctor as a concern you have and avoid making the decision until after that.

My DS had life threatening health problems as a baby and they caused ongoing issues. I’ve always found doctors will get into the nitty gritty around medications when needed. Usually they have clear answers why it’s offered in certain situations and why it may be worth risking side effects to see if it has that positive effect. An experienced doctor in that area is usually up to date on the evidence surrounding the condition/situation and the medications themselves and so can give much more informative answers.

Have you spoken to Asthma UK? They are helpful.

Could be virus-induced asthma.

My child reacted badly to Montelukast. The neuropsychiatric risks were not in the leaflet we were given and despite discussing his anxiety, insomnia and mood changes the doctor did not flag up that they are known side affects. I discovered the information myself randomly looking things up on the Internet.

It seems we are not the only ones as it was in the news recently. There is a Montelukast uk action group and I think things are under review or investigation. I think you would be very reasonable to ask for a safer alternative considering this.

I believe from this article it's now under review so hopefully GP will totally understand us trying inhalers instead, which she did say were an option. Thanks all

amp.theguardian.com/society/2024/mar/03/safety-fears-over-asthma-drug-after-young-children-suffer-severe-side-effects