If you’re reading this there is a chance you’ve used topical steroids for eczema and perhaps some of you are going through topical steroid withdrawal, as I am.
But how many of us have actually reported the medication we used to the appropriate organisations?
I know I haven’t. It just never occurred to me.
And because we are made to feel that we misused these medications we feel like perhaps it was our fault.
We raise it with our dermatologists and doctors and it’s swept under the carpet.
Like if we ignore this problem it will go away.
But TSW is not going to to go away.
Now that I can see how much my skin has improved, and continues to do so I feel I need to take action. And now I can look back at the side effects of topicals steroid withdrawal and see what a truly brutal withdrawal it was. There are side effects and there is losing two years of your life to recovery.
I’m exaggerating, but I certainly put my life on hold for six months completely when I could not work or do much. I have definitely put my dating and relationship life on hold for over two years. I didn’t sleep properly for well over 15 months. All because a medication that was supposed to fix my skin stopped working.
So I urge you all, if you are in the same boat, to report these problems. It could be one way that we can get people to hear us. Because at the moment we feel like we have no voice.
Use the Yellow Card Scheme – UK
In the UK you can report a problem with medication with Gov.uk via the Yellow Card scheme.
- Select the first option – Side Effect to a medicine (arguable could also be Defective medicine but I went for the first option)
- It’s a lengthy form and you may need your medical records to hand to know when you first started using topical steroids
- I may do another form for Protopic
- Possibly one for Methotrexate which I think gave me shingles, but I can’t really prove that…
And in America
In the USA you can report to the US Food and Drugs Administration (FDA)
Reporting medication in Australia
And in Australia, contact Health Direct.
You can also report directly to the Therapeutic Goods Association (TGA) in Australia. All you do is complete the online form.
I haven’t done this research for other countries bur similar schemes must be available.
Make your voice heard.
Report your addiction and the lack of recognition, support and guidance.
We have to stop the over prescription of topical steroids for eczema. Long term use of these creams is not good and is causing a potentially massive problem in the future.
I have an auto immune disease ,nodular prurigo and was diagnosed some 16 years ago . My story is heart breaking as i spent two years having bath puva and have forgotten how many tubes of steroid creams i have gone through, for the last 6 or more years i have been on 10 milligrames daily of prednisilone, my skin is so thin i only have to touch something and i blead literally so much that i am mostly covered in dressings. My life ended with this disease i cannot remember what it feels like to be well.. Ihave been on various medications including methotrexate, thalidomide and various others, My problem being most doctors have never even heard of the disease .and not a lot of research goes into it. THE skin on my arms look as if i have been in a really bad fire they are almost black gone are the days when i could wear short sleaves, anyway i have not had excema but i have a daughter who is still suffering to-day and she is 50 years old and has never been able to wear a skirt ,thankyou for listening to one very depressed person
Hi Ann, I’m so sorry to hear this, it sounds horrible. My NP seems to have cleared up and for that I am eternally grateful. I don’t know what to suggest for your daughter, just to say she is not alone. it is a really rough condition to live with. I found that processed food made mine much worse.