How To Beat Topical Steroid Withdrawal (TSW)/Red Skin Syndrome (RSS)
by Dr. Chris Reynolds. M.B.,B.S.
"Every time I see a doctor or dermatologist they don't know what I am talking about - they say steroids just thin the skin. The most recent derm who I was told was one of the best in Sydney started off by saying that TSW is a "load of s**t" and doesn't really exist. I was so upset when she told me to just go back on steroids." Bev. Australia
Does that sound familiar? But many doctors, including dermatologists, simply don't believe topical steroid withdrawal or "red skin syndrome" actually exists!
"It's just the eczema playing up again. Let's try something a little stronger."
In other words, ALL the symptoms of TSW must be due to "eczema", NOT topical steroids (TS) or other similar drugs prescribed for this skin condition. Therefore, if there's cracking, weeping, pain, infection etc. keep applying steroids and if it doesn't improve, we'll use a stronger, "more powerful" drug to keep the "eczema" under control. For example, cyclosporin, tacrolimus (Protopic - which should be avoided at all costs) and other potent drugs that not only suppress the immune system, sometimes severely, but cause marked atrophy (thinning) of the skin as well.
Most eczema sufferers outgrow the condition by the age of 20, so why do symptoms of the condition frequently persist, even into old age? Because the symptoms are due to TSW, not eczema. I have successfully weaned numerous patients off TS who were still being treated for "eczema" in their 70's! But they didn't have eczema, because once they were weaned off TS using wheatgrass extract, their skin returned to normal.
Because I have helped numerous patients recover from TSW/RSS over the past 20 years or so, (View some examples) it seems that overuse/abuse of TS has been the prime cause of needless patient suffering since the early 1950's when they were first introduced. Ironically, these drugs revolutionised the treatment of numerous skin conditions and eased much suffering - but at the high price of skin atrophy. Before wheatgrass found its way into my "drug cupboard", I too heralded their use, prescribing them often as a first line of treatment for many skin conditions including infantile eczema even.
So now, the TS-dependent patient would seem to have only two choices. Go 'cold turkey' and simply stop using TS, or, continue using them and suffer the consequences. Either suffer, often severely, the adverse effects for possibly 3 to 5 years (because it often takes that long), or continue with TS, thinning and damaging the skin and compromising the effectiveness of one's immune system.
WHAT ARE THE NEGATIVE EFFECTS OF TOPICAL STEROID USE?
There is no doubt they exist - and they are numerous. Google 'topical steroid withdrawal' and 'red skin syndrome' images for numerous examples of just how seriously TS can damage the skin. Please also view this article where consultant dermatologists' opinions comprehensively support what I'm trying to say.
But it's not just the skin that is involved, it's systemic. i.e. The whole body, including the immune system can be affected! View this article for more information.
Finally, this link from Wikipedia provides the "relative strengths" of the many different kinds of available topical steroids and grades them according to the potential severity of adverse effects.
So, adverse reactions to TS have been known for a long time. And, there ARE dermatologists who do recognise the damage topical steroids can do. Unfortunately, it appears the majority don't.
Even after a few days of TS use, microscopic damage to the skin can be detected. After prolonged use, macroscopic damage - 'skin atrophy' - or thinning of the skin, occurs. Most importantly, the immune cells responsible for protecting our bodies from external invaders such as bacteria (which are confined mainly to the upper layers of the skin i.e. the epidermis), are at risk. If these cells are reduced in number or damaged as a result of topical steroid use, skin infections are likely to occur and/or rebound flares can occur when the drugs are reduced or ceased. In many cases, severe withdrawal symptoms occur and the patient suffers, sometimes immensely.
After continued TS use, "flares" or "rebound" effects can, in some cases, occur just hours after ceasing the drugs. The reaction can be severe, distressful and difficult to control. Burning pain, weeping skin, constant itching, scratching, dryness, recurrent bacterial infections, patchy discoloration, disfigurement, cracking and tightening of the skin may occur. Urgent admission to hospital for treatment of blood-poisoning with intravenous antibiotics is not uncommon. The severe stress involved and unsightliness of one's skin can lead to adverse psychological effects such as depression.
In many cases, rebound symptoms come to control the patient's life while skin damage continues relentlessly. For some reason, these unfortunate individuals are often referred to as "steroid-addicted", which to me suggests that the patient is to blame for his or her condition. This is not true. Instead, we should perhaps ask why these drugs were prescribed in the first place? After all, topical steroids are standard, recognised treatment for eczema both infantile and adult. Because it assists recovery by restoring the skin's structure and function, (which takes about one year) I prescribe wheatgrass extract for all my TSW patients, including infants. (See how wheatgrass can control infantile eczema without TS).
HOW DO TOPICAL STEROIDS DAMAGE THE SKIN?
The skin has many functions and is a very complex organ - the body's largest in fact - but if TS thins the skin these functions may be compromised. Even after a week or two of TS "treatment", there is a reduction in the size and number of skin cells forming the skin's upper layers. Continued use then gradually destroys cell layers forming the skin's upper layers. Reduction in cell division and growth leads to damage to the 'microcirculation' i.e. the tiny blood vessels and nerves that control the skin's blood flow which then slows the healing process. Also, pain-sensing nerve receptors (nociceptors) are confined mainly to the upper layers of the skin. As the skin gradually atrophies or thins out, these nerve endings are exposed and become increasingly sensitised which can result in severe pain.
Minute nerves also control the blood flow throughout the skin. If damaged, oxygen and nutrient supply essential for cell growth and repair also become affected. Skin cells are progressively destroyed along with the structural cells such as fibroblasts that help maintain the skin's structure and stability.
Damage by TS to immune system cells in the upper layer of the skin which are so vital for effective recognition of bacteria and other invaders and immunological protection further reduces the skin's ability to defend itself (and subsequently, the body) from infection.
In this video Dr. Marvin Rapaport, a pro-TSW dermatologist in the US explains "red skin" and "burning". I recommend it to you.
HOW CAN WHEATGRASS HELP ME THROUGH TOPICAL STEROID WITHDRAWAL?
Wheatgrass and other cereal grasses have been the subject of extensive clinical and laboratory research since the 1930's in the US and elsewhere and continues to this day. It has been proven highly successful for the treatment of burns, injuries, skin pathology including TSW and many other conditions.
The wheatgrass I prescribe and use for my own TSW patients is a potent extract derived from young wheatgrass sprouts at the "jointing phase" i.e. just before the wheat seed begins to form. This is the stage of growth where maximum bioactivity develops in the plant.
How does it work? The answer is really quite complex because wheatgrass has numerous healing properties. Many of these can be viewed on this website under 'Conditions' and/or 'Research'.
Briefly, wheatgrass contains so-far unidentified bioactives that rapidly penetrate the skin on contact. These bioactives are almost certainly (I have scientific evidence to show this) 'ligands' which are chemical messsengers that attach to various cells to activate a reaction that in turn leads to a number of responses such as pain relief, growth factor activation, anti-inflammatory effects, immune modulation and so on.
Here are some examples demonstrating how quickly wheatgrass can heal damaged skin most likely by stimulating growth factor activity that is very important in aiding recovery of topical steroid damaged skin:
However, it is important to know that although wheatgrass can help you through TSW by reducing pain, burning and itching, it is limited in this respect. Its most important function is to stimulate new growth of skin cells and repair the skin's structure and functionality. There seems little point when going 'cold turkey' to be 4 or 5 years down the track to find your skin has not regained its normal structure and function. But, with perseverance and once daily application of wheatgrass, your skin will almost certainly recover. In most of the cases I have managed, it takes about one year.
The case below illustrates how quickly wheatgrass can restore 'elephant skin' to normal. This is a common side effect of long-term TS usage where the skin, mainly around joints, loses its normal strength and elasticity due to damage to collagen and other structural elements. The skin becomes lax, and large, flaccid "folds" develop. As far as I am aware, there is nothing else available that can achieve such a remarkable result and in such a short period of time.
Here, wheatgrass has clearly demonstrated its ability to "work" positively, and rapidly, on skin repair. Is it not reasonable therefore to expect it to repair ALL the damage caused by TSW if the sufferer perseveres? I know it is because I have seen so many TSW patients recover fully by using it. Damaged skin in time gradually reverts to normal in the majority of cases if one perseveres. However, this is not a 'quick fix'. It takes time - around 6 to 12 months - for full, TS-free skin to develop which is a lot better than the 4 to 5 years it takes going 'cold turkey'. Even so-called "irreversible damage" can be repaired. By comparison, because the skin structure and function has not been restored, 'cold turkey' patients may be left with permanent atrophy and associated skin dysfunction.
MANAGING ECZEMA AND TSW WITH WHEATGRASS
My advice for parents of eczema-affected children is to avoid the use of topical steroids if at all possible. If the rash isn't too bad and the child is not bothered by it, don't use anything. Often the skin may look bad, but if it is not bothering your child, leave it alone. Avoid soap, baths (use a damp flannel for washing), and any other skin applications that might irritate the skin. And if you must "treat" your child, try to find an alternative, non-steroidal, natural remedy instead. Wheatgrass is only one of them, but I have found it to be very useful (preferably in liquid form) for infantile eczema using a once daily application. You can use wheatgrass juice or proprietary brands, or grow your own wheatgrass and juice it in a blender. Numerous websites will show you how to do this.
ADULT "ECZEMA"/TOPICAL STEROID WITHDRAWAL
As with infantile eczema, the aim is to stimulate skin cell growth and repair, so apply wheatgrass Skin Recovery Spray (or wheatgrass juice, which can still be effective, but is not as potent) once a day to the TSW-affected areas. Experience shows there is no need to apply the spray more than once daily. In fact it is wasteful unless of course you find the spray eases pain, itch, dryness or other symptoms. It is perfectly safe to use as often as you like, but don't rely on it to stop or control these symptoms. What we're trying to do is to restore your skin to normal - in about 12 months.
Wheatgrass in the early stages won't appear to be doing much for your symptoms, but in the background it is working hard to recover your skin by helping your skin to regain its normal structure and function. Try to think in terms of "skin recovery" and do your best to persevere because your skin and symptoms will eventually improve if you do.
Alternatively, should you decide to use the 'TS Reduction Table' below and come down gradually off TS, you should always aim to reduce the topical steroid dose or number of applications and apply wheatgrass to the affected areas on your skin daily. It is also a good idea to keep a "dosage diary" so you can follow your progress of TS reduction. In the early stages it can be difficult to reduce even one application of TS, but if you persevere, you will eventually only need wheatgrass to work with your body to continue recovery.
This TOPICAL STEROID REDUCTION GUIDE
|TSWithdrawal dose reduction table (139 kb)|
In the event you don't have access to sufficient topical steroid, which is often the case, you will need to reduce the number of daily applications to suit. I suggest you use the first day of each week on the table as one way to do this. i.e. Use the first line in Week 1 on Day 1, then the first day of Week 2 and so on. Do your utmost to overcome withdrawal symptoms, but if this is impossible (and I mean "impossible"), go back to the beginning and try again. This way you will at least be gradually reducing the amount of TS you're applying to your skin while the daily wheatgrass application works at restoring your skin to normal. Also, only use very small amounts of TS and apply only to the very worst areas. We're only looking at "controlling" your symptoms as much as possible, not stopping them altogether. They will stop in due course.
It is your courage in facing this "monster" that is going to pull you through. You may go through hell and back, but every day you apply wheatgrass and have a day without using a topical steroid gradually adds up, and your skin will begin to show signs of healing. For instance, reduction in elephant skin, weeping wounds, and dry, cracked skin. Try to look forward to the day that wheatgrass returns your skin to normal, which it will, if you persevere. Mark your calendar for 12 months and check off the days. You may not be fully recovered by then, but you will be well on the way. You'll know it and will feel proud of yourself for having persevered.
Remember, the aim may be to rid yourself of TS, but you want to have normal skin at the end of the ordeal. So try to see this 12 months as a transitional phase. It's okay to use TS sparingly from time to time, but do your utmost not to. Think how long you've suffered already. Every day without TS is another day towards a much better quality of life.
If possible, combine the topical with daily oral antioxidant-rich wheatgrass extract (e.g. Supershots, or wheatgrass juice). This helps repair and maintain a damaged immune system caused by topical and/or oral steroids. There is evidence that wheatgrass may stimulate growth hormone production from the pituitary gland. Growth Hormone activates IGF-1 (insulin growth factor -1) which promotes tissue growth and healing.
Finally, try not to use any applications on your TS-affected skin other than wheatgrass and water. Because your skin's immune status has been highly compromised your skin is most likely sensitised to ANY kind of application. e.g. soap, coconut and other oils, cosmetics, shampoo - almost anything. The fewer substances you apply, the more likely your skin will recover sooner. (View this excellent example) I have learned this over the years from my patients who have experimented with wheatgrass and found that when they stopped using all topicals other than wheatgrass, improvement in their skin recovery accelerated.
Please watch this video on how to get maximum benefit from taking wheatgrass. If necessary, grow your own wheatgrass, juice and drink it and apply it daily - and persevere.
Remember, this process takes time, and, like many "medical" conditions, suffering is part of it. It is important to photograph your worst affected areas for comparison purposes later, before commencing this programme, bearing in mind, skin eruptions can occur anywhere and everywhere. These eruptions are NOT eczema, they are topical steroid withdrawal symptoms. i.e. an adverse drug reaction.
Finally, try to avoid soap. It denies your skin the natural sebum that helps keep it moist, and you need that moisture at this stage. Try just using water.
Also, reduce hot water exposure, it dries your skin by removing sebum, the oily natural moisturiser essential for normal skin function. Take 5 minute (warm if necessary) showers and NO BATHS.
If possible, apply nothing on your skin other than wheatgrass. Give it a chance to recover. And, no oils, moisturisers, creams (not even Wheatgrass Cream), petroleum jelly, etc.
And if you think you need help, you're welcome to contact me.
Try to see wheatgrass as a friend helping you through your TSW ordeal.
A WORD ABOUT ORAL STEROIDS FOR TSWProbably the most efficient and rapid way to overcome TSW and avoiding severe withdrawal symptoms is by using the oral corticosteroid, prednisolone. In fact, in a number of cases, so severe was the suffering, I had no choice but to use this method. Also, I can often wean patients off TS more rapidly this way using wheatgrass extract and the medication together. In all cases, this method has worked well. To me, the standard method of commencing at high doses (e.g.50 mg) then reduce by large increments over a few weeks is not very effective. My method is to reduce the dose gradually from a starting dose of 20mg. (which is not a large dose compared with that used in rheumatoid arthritis and other conditions) reducing by 2.5mg. or 5mg. increments depending on the patient's response. Close medical supervision is however, essential as is daily wheatgrass application.
Footnote: Apparently, a well known TSW/TSS forum, appalled at my suggestion that oral steroids could be used successfully in reducing rebound suffering in TSW cases, excluded me from their forum. Given the horror suffered by many if not most TSW patients and the succour oral steroids can provide, one might question their rationale for doing so. TSW is not a condition to be taken lightly and, under close medical supervision, oral steroids can sometimes save lives.