Long Covid is a recognised condition, one that doctors are learning to recognise, diagnose and support patients through. Yet it’s a tricky condition to identify, so it’s not easy to test for. Yet the guidelines for doctors encourage them to diagnose patients even if they have one symptom.
This recent article by Michelle Berriedale-Johnson, Long Covid, gave me so much hope for those people who have been unlucky to now have lasting and damaging consequences to the covid vaccine.
But it also made me really angry. Topical Steroid Addiction and Withdrawal was known about as long ago as the 1970’s. However most doctors will not and cannot diagnose it, despite the fact that most of us have all the symptoms associated with this horrible condition, lasting YEARS!
I know Covid caused many deaths and TSW is not life threatening, and I understand a lot of people are affected by Long Covid But what if TSW is real, what if there are thousands, millions of people thinking they have uncontrollable severe eczema that they’re going to have to just live with for the rest of their lives. What if all those people being told to keep using
Topical steroid withdrawal is rare
We just keep being told it is rare, but visit support groups, Facebook Groups, social media and you’ll see thousands of patients who think they’re experiencing TSW. They mostly go undiagnosed and choose to heal their own way, with no support. Doctors and dermatologists aren’t seeing these people in their clinics because they dismiss them, gaslight them and belittle them.
Topical corticosteroids are completely safe if used correctly
We’re also told that topical steroids are safe, yet we are still experiencing rebound flares and withdrawal, requiring stronger and stronger steroids for longer and longer… yet new guidelines now say use for 1-2 weeks only and then go back to your doctor. Doctors and dermatologists are still mostly of the belief that TSW is very rare and most of us just have out of control severe eczema.
How do rare, hard to diagnose conditions get discovered?
There are many other instances where it’s taken a long time for the medical profession to recognise the damage done by drugs and medications. These include thalidomide, vaginal mesh, lithium and many more drugs and procedures all do more harm than good. Just read Baroness Cumberlege’s Do No Harm Review . A link can be found in this blog, Topical Steroids harm is not heal us.
There are also many more rare medical conditions that took years to be understood fully, like coeliac disease, ME, MS, etc. and typically patients can struggle for years before getting that diagnosis and the care and support the need and deserve.
However they do get a diagnosis eventually and they are then eligible for lots of different treatments, not jus the drug route. So what is going to take to get TSW to be taken seriously?
I thought I’d just do a really quick review of a few conditions, Covid being one of them – a new pandemic but a condition that has already been widely recognised and researched.
| Medical Condition | First observed | Conditions and Symptoms approved | Doctors can diagnose | Studies |
| Long Covid | 2020/21 | Visit the NHS website to see the most common side effects of Long Covid | Yes – They are encouraged to diagnose even if patients have only one symptom! | There are already 1,438 studies listed on Pubmed into Long Covid. An international survey found that 45% of Long COVID sufferers had reduced their workload and 22% were still unable to work. This has implications for labour force productivity and the cost of long-term sickness absence. The latest ONS Survey found that Long COVID symptoms adversely affected the day-to-day activities of 63% of those with self-reported long COVID, with 18% reporting that their ability to undertake their day-to-day activities had been ‘limited a lot’. |
| Myalgic Encephalomyelitis (ME) | As far back as 1750, Sir Richard Manningham talked of Little Fever, thought to be ME | Extreme fatigue, lasting longer than six months. | Diagnosis can take 6 months as other causes of fatigue do not last longer | There are approx 9,835 results into ME on the PubMed website. |
| Coeliac Disease | Identified 8,000 years ago by Areteaus, a greek physician | Can be confused with other conditions such as IBS but are well documented | Antibody Blood tests and a gut biopsy are required diagnose CD. | There are 28,569 results shown on the PubMed website. Visit the Coeliac UK website for Current and Past studies |
| Allergies | Egyptian hieroglyphics depict a bee sting allergy | NICE guidelines outline the symptoms, including skin swelling, difficulty breathing, anaphylaxis etc. | Tests take anything from an hour to weeks or months to receive blood test results | There are approx. 536,295 studies into various types of allergies, from good to venom, listed on PubMed. Many studies can also be found in Allergy and Immunology publications. Also visit The Allergy UK website. |
| Topical Steroid Addiction and Withdrawal (TSW) | 1970s | Dr George Moncrieff – the only doctor willing to speak out about TSW ITSAN, the Topical Steroid Withdrawal Support US charity was established in 2021. UK support group – Scratch That – 2021 Eczema Society and British Association of Dermatologists join statement issued 2021 MHRA – Sept 2021 | No | I found 18 studies into TSW, most not robust or well respected enough to be taken seriously yet. Most also state it is very rare, whilst this may be the case but I think it’s more common than dermatologists admit. Click here for more information on TSW Studies |
Diagnosis for other addictions
A patient could walk into any doctor’s surgery and ask for help, treatment and a diagnosis for alcoholism, drug addiction and smoking tobacco addiction and they would be believed and taken seriously.
So why are those of us experiencing rebound flares and decided to go through TSW just systematically ignored, disbelieved and gaslit and being told to just use more topical steroids?
Surely as patients we deserve to be listened to. Instead most of us are discharged when we refuse topical steroid and immuno suppressant medication because there is nothing else available. What this means is that doctors are not seeing TSW patients. We are just all doing this on our own without medical supervision.
My dermatologist is currently continuing to see me although he is not happy about things and isn’t convinced about TSW.
It’s unacceptable and I will not stop raising awareness until things improve and doctors are able to give a diagnosis to TSW patients.
So what’s the future for TSW?
Firstly I think we should rename it Really Really Long Topical Steroid Withdrawal!
I think we have a very long way until we can convince doctors and dermatologist that what we are going through is not just uncontrolled severe eczema, but until more of us have healed and gone through it, we cannot prove it.
And until doctors and dermatologists can diagnose it we will continue to go through it alone.
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