When we spoke to people, and at the time of writing (September 2022), there were no evidence-based or approved Long Covid drug treatments available. People told us about their Long Covid symptoms and what medicines and supplements they had taken in the hope of improving their symptoms or getting rid of them completely.
This page covers:
- Over-the-counter and prescribed medicines people had tried for Long Covid symptoms
- Whether medications were thought to have helped Long Covid symptoms
- Supplements people had tried and whether they thought they had helped
- Hopes for the discovery of effective Long Covid drug treatments in future
Over-the-counter and prescribed medicines people had tried for Long Covid symptoms
Several people commented on the lack of drug treatments for Long Covid. Shaista said she hadn’t tried any treatments or medicines because “as far as I was told there is nothing”. Iain said he was given “no treatment, I think because there is no treatment”. This meant that many people talked about treating their symptoms individually. Often, they did this by turning first to over-the-counter medications, such as common painkillers like paracetamol or ibuprofen. Many also took a variety of vitamin and mineral supplements, such as Vitamin D, niacin or curcumin, hoping this might help despite the lack of evidence.
Anthony bought paracetamol, antihistamines, and CBD oil over the counter to help with his headaches and other Long Covid symptoms. He found paracetamol helpful before going to bed but didn’t think the antihistamines or CBD oil helped him.
People also told us about medicines they had been prescribed by their GP or other specialists for various symptoms. To give just a few examples: Sara and Christian were given inhalers for breathing problems; Adele and Jennifer were prescribed betablockers for heart symptoms; Tom was put on statins and blood pressure tablets when his blood pressure and cholesterol “spiked”; Susan and Ben were both taking small doses of amitriptyline to help them sleep; and Penny and Richard were prescribed anti-inflammatory medication to relieve pain. While a few people were no longer taking any medication, some were taking several drugs to treat their different symptoms.
Ellen was admitted to hospital and diagnosed with inflammation around her heart. She was prescribed anti-inflammatories, painkillers and a tablet to protect her stomach. She was relieved when she no longer had to take any tablets.
To manage his many symptoms, Ben was taking six types of medication daily. He filled a pill box for the week ahead and his partner checked it for him.
Whether medications were thought to have helped Long Covid symptoms
From what people told us about medications they had tried, it was clear that there was no ‘one size fits all’ approach to treating Long Covid symptoms. A medicine which one person found helpful for a specific symptom might not have made any difference to another person for the same type of symptom. As mentioned above, Anthony felt no benefit from taking antihistamines, but Adele said they had made a “massive difference” to her. Adele also said she had found betablockers helpful, but they had not helped Jennifer.
Adele found it reassuring to share experiences with people with similar symptoms through a Facebook group for doctors with Long Covid.
After taking advice from a cardiologist, Jennifer’s GP prescribed betablockers for her high heart rate. She had to stop taking them very quickly because they lowered her heart rate so much she could hardly stand up.
There were a few people we spoke to who said it was hard to know if the medications they had tried had made them feel better. Hannah was taking cyclizine to manage nausea but said it was “hit and miss” as to how much it helped her. She felt it didn’t “work” if she was having a “really anxious day”. Jamie said: “it’s hard to tell if it’s just that you’re having a good day, or what’s helping… nobody really knows [and] you’re just kind of going with what people [on forums are suggesting]”. Charlotte and Michael said they were willing to try different medications in the hope that they would help.
Charlotte was willing to try off licence drugs which her private specialist had prescribed.
Michael learnt about medications from others with Long Covid. He said that trying things and hoping they work is “all there really is with Long Covid.”
Supplements people had tried and whether they thought they had helped
Taking vitamin and mineral supplements was also something that many of the people we spoke to had tried, even though there is little evidence to support these. A wide range of supplements were mentioned, including vitamin D, vitamin C, zinc, iron and fish oils. Some people said they took a number of supplements. Vonnie, who was put in touch with a nutritionist, said: “I was given so many things to take, honestly. Zinc, silver, iron, Vitamin D, loads of drinks that were juiced for me.” Diane said the supplements and herbs she was taking were “to boost your immunity [and] body… because you’re kind of in a desperate situation”. Frances started to take vitamin D after hearing that people with Long Covid might have low levels of it and she reasoned that “it won’t do you any harm”. Ben said he was taking vitamin D because he wasn’t getting as much sunlight as he used to, and he was also taking a general multivitamin “to make sure there’s nothing else dietary that I’m missing”.
It wasn’t always easy for people to say for definite if the supplements they were taking were making a difference to their symptoms. Sofia said that she had felt better after just one week of taking a multivitamin containing iron. People were more likely to say that they were uncertain if supplements had made a difference. Adele said: “I also have been taking lots of supplements, and I don’t know if they’ve helped or not, because I haven’t stopped taking them and seeing if things get, you know, better or worse.” Jennifer stopped taking some supplements after speaking to a nutritionist who advised that it “was better to get [vitamins and minerals] through a good diet”. Faatimah decided to stop most of the supplements she was taking because “it’s really hard to see and determine which one is affecting you in which way [and] it can take months… so I thought I don’t think it’s worth paying all that stuff.”
Hopes for the discovery of effective Long Covid drug treatments in future
People hoped research would continue to look for, and discover, effective drug treatments for Long Covid. Some were keeping up to date with research that was happening.