Linda's Blog

2/10/20: Prednisone - The Miracle Drug

This an important but tricky topic for which I am passionate. Prednisone is standard care for D.R.E.S.S. therapy and likely you or someone you care for is taking a significant dose of it. It is important to understand that your body naturally produces roughly 8 mg of cortisol every morning, which is the foundation for your energy and metabolism. Meanwhile, D.R.E.S.S. treatment may require you take over 100 mg of prednisone per day, which is a big surge to your system. Very simply, your natural production of cortisol stops as your body is pumped with steroids.

 

Given the side effects of excessive steroid usage, tapering off prednisone is top of mind for doctors and D.R.E.S.S. patients alike. While tapering off prednisone is an important step in the healing process, it is easier said than done. In my experience, I shouldn’t have tapered as fast as the doctors and I wanted. Reflecting on others’ experiences, this is not uncommon. My advice is to do some research and really think about what is happening to your body and slowly taper off the steroids. 

 

For example, I went from 120 to 100 to 80 mg in a period of just a few weeks and that was too fast. I broke out in rashes very quickly and ended up back on 120-140 mg, and this happened again at different plateaus. When I transitioned from 60 to 30 mg, I had to go back to 60 to get the flare under control and then start the slow tapering process all over again. Tapering down too quickly leads to the yo-yo consumption of steroids. This means that when you decrease dosage too quickly, your D.R.E.S.S. symptoms come back with a vengeance and you need to take more prednisone to get them under control. Here is my experience, which I hope will do the following three things:

  • Prompt you to ask more questions of your doctor (presumably the dermatologist.) 

  • Listen to your body and monitor your symptoms very closely.

  • Understand and educate yourself on the side effects of steroids. 

 

My experience with D.R.E.S.S. and prednisone: 

I was diagnosed with Rheumatoid Arthritis (R.A.) and by the time of the diagnosis, the disease was in full flare and the pain was tremendous. I chose to take sulphasalazine and was on a small dose (30 mg) of prednisone for the inflammation and swelling from the R.A. not being diagnosed for months. I was having symptoms of D.R.E.S.S. but I didn’t recognize it until I started itching and getting some rashes on my chest. Initially doctors thought the symptoms may have been caused by the prednisone and tapered down the dosage accordingly. However, the prednisone was actually suppressing the start of my long journey managing D.R.E.S.S. Please see my full story here.

 

Let’start by stipulating that steroids were a must for me; every D.R.E.S.S. case is different and my experience may not be the norm.  I also was using topical steroid creams (see my blog from 12/26 below). After being discharged from the hospital, I was on 120 mg per day.

 

Steroid Acne and Skin Issues

I experienced steroid acne. My skin was riddled with broken blood vessels, pustules and huge blackheads. Gross, I know. If you're experiencing this, remember it will pass. Take your doctor's advice and manage the acne with a benzoyl peroxide product. Be careful not to touch your face when it is so sensitive. Among the terrible rashes all over my body, the itchy scalp was frustrating and my doctor gave me a prescription that helped. Make sure you talk to your doctor if you have the same experience. My once-perfect skin was suddenly red and scaly. In addition to the rashes, my skin was prone to bruising and breaking, given the sensitivity of my thin skin and the itching. My skin has not gone back to normal, especially around my neck and chest and I continue to be very sensitive to the sun.

 

Compromised Immune System

While on steroids, your immune system is compromised so you can’t fight infections well.  Be careful with any dental work and work to keep your system clean – urinary tract infections and thrush were challenges for me. Stay in touch with your doctors or wellness practitioners about any flares, desensitization of food and sore corners in your mouth, as these are signs of issues. Cuts and scrapes take longer to heal and I had to be careful not to use any anti bacterial creams containing sulfur. 

 

Hunger and Weight Gain

Manage your food intake – try not to starve yourself or overindulge. It is hard - I lost a significant amount of weight in the first three weeks. Once I could start eating better, I focused on high fat foods such as avocados, walnuts and protein. Steroids, however, can make you hungry and long term use will result in water weight gain, or Edema. This happens when your body doesn’t absorb water well so it sits in your skin creating puffiness and swelling (moon face, fatty pocket areas in your arms, stomach). I managed the hunger by taking a supplement called 'Crave Arrest' and was eating the healthiest I have ever eaten. However, over the year of taking steroids, I gained over 20 pounds. It was all water weight, which I quickly lost after my body “restarted” and got back to normal production of cortisol.  My swelling would always go down after my acupuncturist appointments with Tom Tam on Lincoln street in Boston. Healthcare professionals also recommended I swim as the water helps to redistribute the fluids. I also started working with a personal trainer to regain the significant amount of muscle I lost.

You will get back to normal, have faith and don’t worry about what others think.  I can tell you a few stories - if you are interested, contact me below.

 

Tapering down

At first, my doctors were tapering me down 20 mg every week or so. What I didn’t appreciate was my body was still in shock and I didn’t rest enough; I was still working and trying to keep my schedule. 

Every time I got my dosage down to 80 mg, my rashes would come back. At first I waited until I could talk to the doctors, which only prolonged the inevitable and the rashes progressed. I soon realized I had to manage my own tapering with my doctor, trust my body’s reaction to the tapering and educate myself on the impact to better manage my health. This continued for months. Finally, after eight months I was tapered to 20 mg, only to have another flare and go back up to 60 mg just in time for my brother’s wedding. What could have triggered the reactions? Some possibilities include tapering down too fast, sun, sweating, exerting myself too much, working too much, etc. At this point, my hair was thinning and I was quite puffy. I haven’t decided yet if I want to post pictures - I am sure I will get the courage at some point.

 

At this point, I spoke to my dermatologist about what else I could do to get off the steroids. Recall, I hadn’t been able to treat my R.A. yet since the prednisone was so strong. My synovial fluid in my wrists was significant and the doctors couldn’t believe my symptoms would come through like that given all the prednisone I was on.  My R.A. was aggressive and as you are dealing with D.R.E.S.S., you likely forget you are probably still dealing with the original ailment you for which you took the medication that triggered D.R.E.S.S.  My dermatologist put me on a significant dose of cyclosporine and prednisone. Cyclosporine is used by organ transplant patients to reduce organ rejection.

 

By March of 2016, I was able to taper off the prednisone and then off the cyclosporine, but I faced two major side effects: high blood pressure and hair loss. These symptoms were impacted by prednisone, but the cyclosporine really triggered hair loss. Thank god for my hairdresser and colorist - a pixie cut and some highlights helped to make my hair look thicker. There was a loss of energy until my body started producing cortisol again. Just hang in there - it took longer than I thought. Take a few days off and slow down to feel how you need to.  

 

What else can you expect from Prednisone?

You can expect excessive energy, sleepless nights, really clean closets, houses and apartments and lots of organizing and reading. 

You will likely experience being jittery, be unable to sit still for a while, have a short fuse and be very excitable. I would highly recommend you talk to your colleagues and family about what you are experiencing. It is hard to calm down once your emotions get triggered. I had to find music, visual thoughts and self-talk that would help me calm down. I recall two times when I was triggered by someone taunting me and I couldn’t calm down. My advice is that if you experience the same, go somewhere by yourself and don’t call anyone. This is not a great representation of who you really are.

 

Long term use of steroids can impact your bones and muscles.  My muscles were impacted and I was weak, so exercise is critical. I had trouble walking up a flight of stairs, couldn’t run across the street and lost my balance. Riding my horses was therapeutic and I chose to work with a personal trainer. I needed the discipline of the appointment and I wasn’t strong enough to do yoga and other more rigorous sports. Working with my personal trainer was critical for me to rebuild my balance and muscle slowly without injury. I am coming up on working with my personal trainer, Jeff, for five years and he was a life saver. 

 

This was hard for me to go through and talk about. However, reading incessantly, educating myself on what I was experiencing, medications, food and vitamins, my community of friends, family, colleagues, doctors, wellness doctors, acupuncturist, hairdressers, pharmacist, animals, personal trainer, horses and building community were invaluable during my healing process.

 

My goal is to help someone sharing my experiences. Your symptoms may be very different but please feel free to contact me below if you would like to chat more. 

Thanks for reading and I welcome your feedback.

Linda

12/26/19:The Rashes!

So, you or someone you know is suffering through D.R.E.S.S. Syndrome. Firstly, it's important to note that your skin is the largest organ affected by D.R.E.S.S. 

Now, imagine the sensation of having poison ivy - but multiplied by ten - all over your body, including your scalp. (Ask your dermatologist for a prescription to use on your scalp to reduce the itching). 

Imagine the rashes come in different forms and weaken your skin, or as I say, “your skin opens up." You can expect profuse sweating especially through the night. 
Here are some tips:

  • The key is to stay hydrated, especially your skin. Otherwise, you will shed like a snake and possibly increase skin sensitivities and scarring. 

  • Avoid the sun and heat. It aggravated my situation considerably. Remember you are especially sensitive to it right now.

  • You are likely on a high dose of steroids - including steroid cream. Remember this is standard treatment for D.R.E.S.S.

  • The rashes move around your body. Remember to use cortisone cream in sensitive spots. Steroid creams will thin your skin - look forward to crepe-like skin as a result.

  • Stay hydrated by using Aquaphor continuously through the day. You can find this at your local pharmacy. Doctors recommend the fragrance-free variety. I was vigilant in its application and only peeled on the bottom of my feet and hands - odd I know! It has the Vaseline-like consistency but will help the skin from peeling. You will have to reapply your steroid creams and Aquaphor several times a day. 

  • Buy loose-fitting cotton clothing to wear, including underwear if you can tolerate it.  Needless to say, you will have to do a lot of laundry!

  • Place towels on your furniture - these creams will stain and you don’t want to worry about that. Focus on staying covered with the creams. 

  • Do your best to Hydrate, Hydrate, Hydrate!

  • During this time you are likely taking Antihistamines to reduce the itching. My experience required the following: 12-hour Allegra a.m. and p.m., Zyrtec during the day (since it is non-drowsy) and Benadryl at night to help me sleep.  That sounds like a lot and against any instructions for use, but the itching is significant. Your body is in overdrive and I needed all of these products for a good period of time to get through my day without itching and scarring up my skin. I have scars - steroid creams make your skin thin, so itching is inevitable. Lessen scarring with hydration, antihistamines, limited sun exposure, heat and humidity, and reduction of activity.

Tha​nk you so much for reading, and remember you are STRONG.

Best wishes and healing,

Linda