I recently came across an article written on 29th June 2022 by Kui Mwah, a journalist who has eczema and uses topical steroid creams. She interviewed people about Topical Steroid Withdrawal on Tiktok and also found dermatologists to consult.
And you guessed it, the dermatologist gaslights us yet again.
I’m so disappointed to read yet more gaslighting… it’s so frustrating, unfair and damaging to all that we are doing to try to raise awareness…
Topical steroid addiction or withdrawal occurs due to inappropriate use, typically from the use of moderate to high potency steroids on the face and genitals over a long period of time in people with various skin conditions, especially eczema and seborrheic dermatitis,”
Kui Mwai – The Bustle ‘Ruth Jobarteh, M.D., dermatologist at DRMTLGY‘
You can read the full infuriating and inaccurate article, What is Topical Steroid Withdrawal here.
TSW gaslighting is so damaging and dismissive
Now we can’t blame her for quoting a derm but honestly, I am so beyond sick of hearing this shit over and over again. Dismissing it’s a problem, saying it’s rare and claiming it is our fault.
This is why I disagree with everything in this quote.
- Using topical steroids inappropriately, – Most of us only ever used topical steroids moderately and as directed – if you have eczema you will likely begin using a low potency topical steroid and work your way up. the story is so similar for all of us. This is not something we do without the advice of our dermatologist or GP and we can’t get the drugs without a prescription so how is this our fault?
- Using moderate to high potency steroids on the face – I was told never to do this, so I didn’t. However I was told that Elocon was safe to use on my face – I rarely did as I was so scared of thinning of the skin, but specialists told me it was safe. We can’t have a system where it’s OK for specialists to give out wrong advice but never apologise if later it proves to be damaging. That’s what this feels like. However I did use Protopic in my face and believe that to be just as dangerous in terms of addition and withdrawal. No one is talking about the topical immunosuppressants – poison in my opinion.
- Topical steroids on genitals – I certainly never used any steroids ever on my genitals – Who would you tell anyone to do that? It’s such sensitive skin. And if you have done so, likely you were never really warned not to. The medication literature does not warn against doing this so how can the patient be blamed if they have done? Eczema of the intimate areas is very hard to deal with so I can understand people wanting to heal it fast.
- Long term use – This is the problem. If you have childhood eczema and are not lucky enough to grow out of it, you will likely be told you will never heal and just need to keep using the topical medication. My dermatologist keeps telling me, I’ll never heal from eczema and just need to KEEP USING MORE TOPICAL STEROIDS. How is this now our fault?
This statement is full of so much gaslighting I don’t know where to start. By continuing to use this language, that it’s our fault for using inappropriately and for too long, we dismiss the problem and never address that the way we use them is actually mostly ‘as directed’ and we are prescribed them for a lifetime – who is monitoring this use? My topical steroids were on repeat and I was continually being told I should be using them more and for longer… This just makes no sense.
We need to be able to have open, honest conversations about this. It’s very real and it’s happening to hundreds, thousands of people I believe in fact that everyone with rebounding eczema is beginning the spiral into topical steroid addiction. Yes that’s right. EVERYONE!
What is Topical Steroid Withdrawal really?
Here’s what topical steroid addiction and withdrawal really is:
Topical steroid addiction or withdrawal occurs after using mild, moderate and potent topical and oral steroids as directed by doctors and dermatologists. It can happen after even short term use, but many continue to use long term as doctors refuse to diagnose or recognise the condition. TSW affects various skin conditions, especially eczema, psoriasis and seborrheic dermatitis,”
Ruth Holroyd, Founder and owner of whatallergy.com
Emilie shares her TSW journey on TikTok
Emilie Chho, who I follow on TikTok has TSW herself. She shares eloquently what the condition is like and how she’s managing her healing. This part of the article is brilliant. Thanks for sharing Emilie and I hope you continue to heal.
Be very careful if you’re using topical steroids
We end with another completely hopeless comment from that dermatologist again…
If you’re going to use topical steroids, Jobarteh stresses the importance of following your prescribing dermatologist’s instructions in order to make sure you’re using your cream or pill safely.
Kui Mwai – The Bustle ‘Ruth Jobarteh, M.D., dermatologist at DRMTLGY‘
Can I just point out that all our dermatologists advised us how to use these creams and we followed this advice (in most cases), yet we still became addicted and face a lifetime of worsening uncontrolled rebounding eczema if we continue to use them.
Dermatologists – please listen to us about TSW
Please can a dermatologist admit that this is not rare and that it can happen even with minimal use and after following guidance as directed.
Because if we all listen to dermatologists we’d never go through Topical Steroid Withdrawal, WE WOULD STAY IN TOPICAL STEROID ADDICTION FOR A LIFETIME. We would continue to damage our skin, our internal organs and who knows where that might lead? Cataracts, eye problems and possibly even cancer.
Before so called experts comment on this condition more research is needed.
How much training do dermatologists actually get into eczema and the effects of long term topical steroid use? Not much. I’ve heard it’s as little as A month of their five years training.
We deserve better.
Where are you dermatologists?
Where the hell are you?
I have yet to meet someone with eczema who is happy using topical steroids and there is a growing number of people realising that they do not have worsening eczema but in fact rebounding from topical steroid addiction.
Please listen to us, read up, research and man up. This could become an epidemic and let me tell you, discovering your skin is completely destroyed by the very cream meant to heal it is devastating, yet we get no support, no diagnosis, no acknowledgment and certainly never any apology.
Medication prescribed to improve a situation should NOT be used if there is any worry of addition and indeed the complete destruction of the skin barrier if the patient decides to stop treatment. It’s a trap you can’t escape unless you stop using them and go through withdrawal.
I will not stop campaigning, writing and sharing about this until things change.
But thanks to Emilie Chho for sharing her journey. She is now healing well and is taking Rinvoq, a steroid free pill that reduces inflammation in the body. I know nothing about this medication and it’s not explained in the article but worth looking into if you are really struggling. There is a link to find out more about Rinvoq in the article linked above.
If you’re not following Emilie yet the link is above to find her.
I’d love to know your thoughts on this. Are you going through TSW and find this infuriating? Or are you free from eczema and TSW and observing from the sidelines?
Hello.
Rinvoq is a JAK inhibitor – Upadacitinib. NICE only allows this as a fifth line drug after August 2022, partly as it costs about £800 a month.
UK dermatologists do certainly more than five years training as you claim – it is more like 15 years training if one includes medical school. What do you mean by five years and a month on eczema?
The average dermatologist might see 12 patients a week with severe eczema – on what basis do you distinguish the severe eczema cases from TSW? What tests do you perform beyond clinical suspicion? Consider the other side.
If you can manage without treatment good for you. No doubt the NHS will thank you. However having such symptoms beyond four months – if true – is simply masochism.
The real problem with the TSW community is when they affect ordinary doctors to such a degree that people do not get treated or are undertreated – because you have scared them off prescribing steroids. This is the real risk of gaslighting.
( I came across your blog because I was curious to see if any in the TSW community use inhaled steroids for Asthma. I have yet to see anyone with severe Asthma who believes that they can manage without inhaled steroids – before they were introduced, most severe asthma patients usually died)
(
HI Rob, thanks so much for your long comment, I’d love to know your background. Are you in dermatology yourself? I need to look into Rinvoq myself as I don’t understand how it works so thanks for the info on that. You’ve raised quite a few things here so I’ll answer them one by one.
1) UK dermatology training – I will check my facts here but I’m pretty sure I’m right in saying the training is sparse in terms of how eczema works, what causes it and how to treat it. The main go to is topical steroids and that has not changed in many years. This is outdated and I do see new drugs coming on board but I can categorically say that I have done more for myself for my own skin than any so called expert has ever done. Doctors have only suggested drugs that suppressed my body and ultimately did a lot of harm. That’s just my story.
2) You say TSW is masochism… my skin is almost the best it’s ever been now on no medication and no paraffin emollients. I had to withdraw from both. Both did untold barbaric damage to my skin.. I can’t prove this but I am expert in my own skin and it’s healing every day. What would have been more masochistic would have been to continue to throw more and more suppressant drugs at my poor body. I had severe eczema whilst using topical steroids, they just stopped working. I had no choice really other than more and more drugs.
3) You say the ‘real problem in the TSW community is ME… US scaring people off from using topical steroids. Really Rob? You need to go back and really understand what gaslighting is. All I’m doing is sharing what I’ve been through because i don’t want anyone else to suffer as I have. That is not gaslighting. I have never told anyone to go cold turkey on this medication. Not everyone will be able to hack it. It is awful. But what I can do is document my skin journey and share it. EVERY medical professional has ignored my fears, told me I will always have eczema, told me to continue to using more topical steroids, told me try methotrexate which made me so poorly I cried in pain with horrific shingles for 5 weeks. My dermatologist walked out while I was still taking in my last appointment. No one looks at what is causing eczema in the first place. And what if we are right? Surely there should be a basic duty of care to DO NO HARM, LISTEN TO THE PATIENT, AND DOCUMENT OUR CONCERNS… What if we are right Rob? What if every adult with rebounding eczema flares is actually addicted to topical steroids? YOU are gaslighting by saying what you said above. I almost didn’t bother replying but I felt on balance it opens up discussion. This is my blog, my story and I will never stop telling it. My main aim is stop people using topical steroids because it doesn’t help long term.
4) As for asthma, my asthma has almost disappeared as the longer I have been off the topical steroids. I now do not use a preventative inhaler, rarely use my blue inhaler. I don’t know how or why this has happened. But I have done a lot to understand my asthma triggers, avoid them, learn to breathe effectively – something noone at any asthma visit ever taught me, reducing anxiety which directly impacts asthma, and so much more. And Rob – I’m not dead yet!
Hi Rob. 20+ year RN, BSN and medical services business owner of 10 years, and Topical Steroid Withdrawal (TSW) sufferer for over 2 years, here. I am one of the few going through this condition who has a TSW diagnosis, and the support of my dermatologist, who is an experienced doctor at an academic hospital. We are currently working on a collective case study research project on TSW. That is what it looks like to have a doctor listen to you. He has accepted that I do not wish to take steroids or any other suppressing agent and is curious about how I have been healing beautifully, particularly this last 6 months. I had a horrific journey for the first 19 months and have recently settled in to suffering from a few remaining symptoms – which include, temperature dysregulation, facial swelling, intense congestion and a few patches of what could be compared to light eczema.
It feels like the medical community (of which I am a member) is embarrassingly slow to acknowledge this debilitating reaction to a very commonly prescribed medication. The success stories of healing alone should be enough, and if evidence-based research is needed, by all means, I hope more doctors initiate that, as opposed to denying the condition. Some doctors who recognize the condition believe that all adults diagnosed with eczema are actually in Topical Steroid Addiction. As you (if you are a medical doctor/professional, I wasn’t sure from your comment) and I know, there are not really definitive diagnostic tests for eczema. It is more or less an umbrella term that is symptom-based and relies on a patient’s medical history and ruling out things like allergies and infection. There are many differences between eczema and TSW. But mostly, it involves the occurrence of a dramatic intensity shift of symptoms that could be confused with eczema that happen after the suppressant medication is stopped. For instance, in my case, I stopped steroid cream use on a few itchy patches (lichenification on the upper lip, ~1 cm diameter patch on anterior portion of my neck, right side, and a couple ~1×2 cm patches on the posterior border of the axillary region, bilaterally), and within a week or two I experienced intense burning across my entire back and I began to develop huge patches of bright red, itchy skin all over my body.
When people suffering from this condition present to the medical setting they try to explain the dramatic change in their symptoms that has occurred with the cessation of medication, and that seems to be the key aspect to this that is not being heard. Doctors then typically convince the patient that they have severe eczema and try to send them off with more of the same immunosuppressant medications that got them into their situation in the first place.
As a medical professional, I am embarrassed that it took me 10 years to figure out that I was indeed in Topical Steroid Addiction. And I am so grateful that I am getting to the end of my healing journey. After 2 years of hell, my skin is starting to look healthy and firm again, and I only have pain/itch attacks when I am exposed to temperatures above 20°C. I am so glad to be rid of these medications that did so much damage to my body. And I hope that the research project that I am putting together with my doctor will help to convince you and other colleagues of ours that this is a serious condition that must be addressed.
I hope you have taken the time to read this, and thank you so much for engaging in this meaningful dialogue with us.
Hi Sasha, thanks so much for the comment. Hearing your experiences as a nurse with all the medical training, it must be so hard to face the truth that a medication meant to heal us has harmed us. It’s so painful and has caused me to feel some deep trauma, mistrust and anger towards the pharmaceutical industry and doctors. I don’t blame them for this happening but I do blame them for refusing to listen to us or take this seriously. I am looking forward to hearing more about your research project and hope it will give us some answers, because no one else is even taking much notice. TSW is not eczema… it is far far worse. But you have healed so much and so have I. We will be able to stand up and prove that we have healed ourselves despite all that damage. What worries me is they’ll just turn around and say, well you would have got better anyway, it’s nothing to do with topical or oral steroids. And we can’t really prove anything can we? So infuriating all this. But i love a debate so thanks for joining the discussion.
Hi Rob,
Let me first say that you’re very lucky to be leaving a comment of this ilk. You’ve clearly never had to endure the pain of TSW and I’m glad. I wouldn’t wish it on my worst enemy, nor someone who is clearly ignorant to the pain it puts someone through. Unfortunately for the sufferers, four months is not usually what it takes to go through it, but im not shocked you find this unbelievable – surprisingly, my dermatolist was in disbelief too. The truth is, topical steroids cause longlasting damage, many years in some case (2 so far in mine). And the sad thing is, it’s completely preventable if doctors and dermatologist looked for the root cause of eczema in the first instance and listened to people like Ruth and myself, instead of calling us crazy (yep, that word was used in my last appointment to describe the people suffering at the hands of the professionals).
Enjoy the normal night sleep you’ll have tonight.
Thanks Hannah. One thing TSW has given us is this wonderful community and the chance to heal our skin. I don’t think mine has even been this good as it is now. When do we know it’s over do you think? Anyway keep healing and thanks for the comment. By sharing our stories hopefully eventually we can prevent further suffering like this.
You may also be interested to read Baroness Cumberledge’s Do No Harm report. Not directly about topical steroids but the parallels are chilling for me. The link can be found here: https://whatallergy.com/2021/12/topical-steroids-harm-us-not-heal-us/
Hello everyone.
Surprised by Ruth’s comment that she had not seen a specialist for Asthma, I wanted to point out having seen a number of respiratory consultants, the process is not a lot different with practice nurses in terms of usefulness.
There are very few places where you could get lab testing done privately – Dr James Hull at IES on Tottenham Court Road is the only place that I could see in London that might offer testing – FeNO testing and the like. This sort of testing should be available to NHS asthma patients – but is not, if you cannot guess why. While a Peak Flow diary is useful – do you know your expected Peak Flows for instance – this is the sort of gaslighting that has seen me attend not a single Asthma review in 10 years. It is possible to more accurately diagnose types of Asthma now including Exercise Induced Asthma. I say this as I am naturally suspicious of middle aged people claiming able to cure their Asthma…..
(I realise that you do not write accurately in places but OCS generally refers to tablets whereas ICS generally refers to inhaled products. Generally speaking, the systemic effect should be greater with OCS, a lesser effect with ICS, with TCS the least systemically affecting. At least until the concept of TSW was noted. Hence it is always interesting to see what these doctors
who recognise TSW say about Asthma treatment. Asthma is frequently misdiagnosed without there being consequences like that of Frame – a Scottish case that resulted in a Fatal Accident Inquiry. One should read that report – if it still is up on Bailii – that case demonstrates a real case of an Adrenal crisis in a child who probably did not have Asthma. In the same way, Magnesium Sulphate can be given as an IV infusion in life threatening Asthma – this is not the same as saying a banana has the same effect.)
Currently I have about 75% eczema with an EASI score above 40 – such that I can speak as a patient. I still get GPs – who when meeting me blind – when asking for a referral – not dermatologists – trying to claim I do not have eczema but just a bit of dry skin. The problem of their gatekeeping role that they will misdiagnose Asthma – because it can be life threatening – but do not care about Eczema – because it is not.
I do not believe that I have TSW. When TSW people say eczema does not itch in the same way etcetera, I say you cannot have had severe eczema. Which is why I asked you if you could explain the difference.between severe eczema and TSW. Sasha above mentions symptoms that can be seen in severe eczema. None of the doctors who write about TSW dispute the existence of severe eczema as well, perhaps only its extent. There are markers that exist now – none widely known or used say like in the Japanese AE Guidelines- are you referring to any of these.? The claims of some to use cortisol testing yet do not ever give reference values – which seems suspicious at the very least.
If you were writing accurately, I do not accept as your blog says that severe eczema does not exist independently of TCS use – I say that it does or else the Ancient Greeks would not have described it if not the numerous labs and hospitals that have grown up over the centuries. (And yet substance D was only described in the 1940s.) While the rates of eczema have definitely gone up in the developed world, to say severe eczema is only caused by TCS use is disingenuous. Clearly TCS can be one factor, but it seems to discount other causes – genetic, environmental or even the oft cited hygiene hypothesis. If you are going to advocate for this distinct condition, you need to account for these arguments.
There is much research done now, some of it high quality – there is the Brown lab in Scotland, there are aging centres in Newcastle and Nottingham – but with the new drugs being costly, if not there being too many eczema patients, something has got to give. It is not for nothing that with the price of Methotrexate dropping to below the price of Smarties – a popular UK sweet – dermatologists are now giving Methotrexate out – monthly cost £3 – like Smarties. They never used to before 2012. They even appear to using these things to avoid more expensive drugs in primary care. While the average eczema patient supposedly has 3.5 items a year that cost a total of £38 on the NHS, One size does not fit all, particularly if you are a repeat punter.
If an adult wishes to discontinue TCS, fair enough – It does not need to be said that it can be rough if your symptoms are moderate to severe. Equally eczema trials do show high rates of people on the placebo arms getting better – an inherent problem or benefit with eczema. Eczema can wax and wane. It can also come back etcetera.
Rapaport is the Beverly Hills doctor who wrote a few article about RSS in the late 1990s. I read his article at the time before ITSAN was even a thing. He has not written anything in 18 years yet still does a roaring trade for some TSW sufferers. Rapaport was the doctor who said that TSW lasting more than three months is pure masochism – and I agree. Do you dispute what Rapaport says? None of the Japanese doctors -Sato, and colleagues claim TSW takes that long to resolve – and not heal. (Beverly Hills’ Rapaport charging $700 for a Zoom consult is one thing, but having coaches like Rob Stuart trying to get someone to drop 100 times that on coaching for a condition that they claim take years to heal looks like something else.)
The TSW community seems to have taken a limited phenomenon and taken it far beyond the realms of what any doctor would claim to be supported by evidence.
If you are a child – like I was who went through periods of having severe eczema not treated with TCS – I can say that wasting such great amounts of time is scandalous.
(Rinvoq is Janus Kinase inhibitor and is used to treat moderate to severe eczema. It is an immune suppressant, albeit a small molecule one. If your interviewee was using this, it would have been to treat eczema, not TSW)
Rob, what’s scandalous is that you seem to be struggling with 75% eczema yourself with no treatment working for you. I really don’t know where to start responding to everything you say above. but let me tell you TSW is NOTHING like uncontrolled severe eczema. I’ve had bad eczema that at one time was well controlled after using topical steroids. But at some point something changed, I don’t know what or why but I couldn’t have periods between using the steroids. My skin got worse, it spread to wider parts of my body, and when I stopped using them altogether my skin broke down to such an extent. The itching was bone deep and day and night long. And I mean it never stops. Eczema itches but you have periods of not itching between. I did not sleep for more than 2-3 hours a night for years. I had nerve pain of zingers that made me bodily flinch with the shock and pain. My skin shed so prolifically and so frequently that it was incredible to observe. None of these symptoms happened when I just had eczema. my skin didn’t also would split and oooze plasma in TSW. This never happened with eczema. If you want more details visit https://whatallergy.com/tsw/ my FAQ to find out.
I don’t think everyone with adult severe eczema is in TSW but if they’re using topical steroids and have gone up the potency ladder, from weak to strong, and are now seeing rebound flares, it could be a very real consideration. And until doctors are given guidance and clinical diagnosis tools this will continue to happen.
People will continue to be ignored, given more topical steroids and told they need to use more.
I am living proof that you can go through this and heal. I’d say I just have mild eczema symptoms now and i no longer need any medication and very little moisturiser. I wouldn’t turn back the clock for a moment and don’t regret my decision at all. If we continue to see eczema and suppress the body’s natural response we will continue to have problems. Suppression isn’t the answer. we need to work out why, what the triggers are avoid them.
The damage done by these topical steroids goes deep into the nerves. We need more research into this. I only know from my own experience and I’m not a doctor. I am not telling anyone to quit their medication, just sharing my own journey.
Finally for your information, the lady in this interview above is going through topical steroid withdrawal and taking Rinvoq.
Rob, what if TSW is real. What if it’s not as rare as they try to tell us. That’s scandalous. Because it’s completely preventable if we can accept that these topical creams cause addiction and can be very damaging.
Anyway that’s all from me for now.
Yours.
Middle aged woman who no longer has asthma and is healing from TSW, having lived with severe eczema all her life.
You might not have understood that along with most doctors, I recognise that one’s own system can be suppressed by steroids in a dose dependent manner, the risk greatest with intravenous administration, then intramuscular, then tablets, then inhalers (the case of Frame); lastly topicals. Tan in 2021 summarizes the situation in a rather short article in Clinical Drug Investigation at page 835
I find it rather odd that within the TSW community it is only the topicals – the last line – that are demonized. I have yet to see someone with severe Asthma – who by definition require treatment with steroids to stay alive – who believes in TSW at its widest extent. (All of which explains why doctors might not consider as valid someone who thinks only topicals have an adverse treatment profile – I mean if you were hospitalised with COVID would you really refuse dexamethasone?).
There is a distinction between medical doctors who recognise TSA and non medical people. The position of Doctors like Rapaport, Lio, Sato and Sheary – who recognise the phenomenon to a degree and would never recommend halting steroids for Asthma.
One tends to find it is only the non medical people like the “dentist” Heba Khalid who try to go much further without giving much in the way of evidence. (When I asked her about Asthma and COVID and the place of anti inflamma tories, her response was to delete all contrary views).
Writing in 2015, Dr Peter Lio from Feinburg in Chicago asked how TSW is different from eczema.
Here Ruth like many in the TSW community claim that only with TSW does one get “bone deep constant itching”. Respectfully I disagree.
The severity of itching varies – at one extreme there is the phosgene (and other chemical agents like that used in the First World War) to allergic itching to that of eczema to that of insect and plant stings. I am grateful that I have not experienced the first – hopefully the Russians have destroyed their stocks – but to claim that TSW itching is worse than eczema is akin to exceptionalism.
Elias and Brian Kim are a couple of the leading researchers on itch and neuronal activity but I have yet to see any evidence that steroids cause nerve damage – as opposed to the recognised pathways. Perhaps you can explain or point me towards any evidence?
Likewise the oozing, shedding and splitting symptoms. I do not think these are any different to eczema symptoms or that they are precipitated by the use of steroids – or require steroids for resolution in part. The same goes for “elephant wrinkles” – lichenification happened with eczema as well before ITSAN was founded.
Lio does try to detail some limited examples of specific symptoms. Perhaps you could say if there are any further specific symptoms that are of concern.
(Having read some more of the articles here, a lot of the information is good but the consistency and accuracy varies. Given that blogs such as this now have the potential to transform and advocate for useful treatment options, if not research, there is a need to lobby sensibly at times and engage with contrary evidence and opinion).
“The TSW community seems to have taken a limited phenomenon and taken it far beyond the realms of what any doctor would claim to be supported by evidence.”
This statement Rob, it sounds like you’re implying we had a choice, that we chose this. Once you’re addicted and in that rebound state you have to face either a future of more and more suppressing steroids both oral and topical, other drugs and other drugs. Always more drugs. What we’ve done has pushed the boundaries yes, but what if we’re right and as many are proving, they are healing to a manageable function skin barrier. I think I’ll always have eczema but I can live with that.
Hey Rob,
I’m 34 years old, just wondered if I was young/old enough to have an opinion on my own skin or to address you?
Apologies in advance, I am dyslexic and typing from my phone.
If you’re 75% covered in eczema and you don’t believe you have TSW then thats perfectly acceptable to have that opinion as no one knows your body better than yourself!
It does not however takeaway from the validility of Ruth’s plight as a TSW sufferer! two conditions can co-exist in this world believe it or not.
I was on Dupixent for 3.5 years and I was costing the NHS a whopping £36,000 a year! so your research about eczema treatments being a cheap as “smarties” (fantastic UK cultural reference by the way) is null and void I’m afraid to say.
Go get your eczema treatment Rob! if its not TSW, chat to your dermatologist about all the treatment possibilities, you do not need to suffer my man.
My only advice (take it or leave it) to you is to becareful not to over-use steroid treatments of any form so you don’t become a fellow TSW suffer too.
Thanks for the comment Charlotte. We all just need to be our own best advocates and learn what our skin needs don’t we. I think Methotrexate (an oral immuno suppressant) is apparently now very cheap whereas dupixent is anything but. I didn’t find the cheap Meth worked for me! Here’s hoping your skin continues to heal and thanks again for the lovely comment. No apologies for dyslexia required, all spellings are accepted here!
A pharmacist Chaplin writing in the Prescriber October 2016 gives some of the statistics of the costs of prescribing for AD in UK primary care – this is where I get some of my average number of prescriptions and their cost from.
While the NHS gets a discount on Dupixent – a fifth line drug – from its list price of around £29,000; Chaplin in the May 2018 issue of the Prescriber notes a yearly cost of £16,500. Unless you work for Sanofi or know someone from their Waterford plant, the cost is clearly less, no matter where you live. It is said that they cannot get the price down much below £8,000 – though if you have any internal figures, do please share these.
Methotrexate – a fourth drug -costs £2.39 for a month’s supply now according to some figures in the BNF. I have experienced GPs refusing to pay for medicated bandages, a first line treatment – at a cost £120 per month – and seek to refer to use Methotrexate instead, a fourth line – clearly the only reason is cost. (I do not know if they still sell Smarties -or their costs – I was never allowed to eat these as a child because of the colouring).
I say all these things because the cost aspects are important. In Brighton where Balmonds is made, there are around 800 patients who could qualify for biologic treatment according to some calculations and NICE guidance yet the Trust will only be able to fund 50 patients at most. Clearly there are many patients going to be shunted into some treatments inappropriately if not Dupixent and other biologics are going to be stopped if the budgets get tighter. The budget figures are worse than anything Liz Truss could cause. So consider yourself fortunate to have got three years worth.
Even GPs in the UK trying to get their patients to use their choice of emollient – that are deemed to cost £3 per 500 grammes – do not understand basic economics where the prescription charge is £9. And some suppliers like Balmonds who could sell their product at £9 do not help themselves with their pricing – 2 for £20?
(My own situation is different. I come from an atopic family that has many medics including derms – who have experience over four generations in as many continents. While I am grateful for things developing – in the late 1970s there were still consultants who thought eczema was just a result of a lack of willpower to resist the urge to scratch – which is just about the most annoying thing to hear for someone with a skin condition. For all the things Ruth says, if she advocates healing from eczema can occur in all cases without treatment, things really have not advanced since the 1970s. )