Prednisone | Lupus | Auto-Immune Disease | Inflammation | Rheumatoid Arthritis
When I was first diagnosed with Lupus, Rheumatoid Arthritis and MCTD or Mixed Connective Tissue Disease 16 years ago I was in a great deal of pain. It was difficult to simply get out of bed to go to the bathroom.
The Rheumatologist prescribed daily dose of prednisone which is a prescription steroid anti-inflammatory medicine. Prednisone was a miracle drug for me. My symptoms disappeared almost overnight. I was out walking, hiking and living my active lifestyle again in no time.
Around 90 days into my initial prednisone use I went to see a highly recommended Rheumatologist at Virginia Mason Medical Center in Seattle.
He told me that long term chronic use of prednisone (more than a year) Would begin to have adverse effects on my body specifically my internal organs. He said I should taper off Prednisone and learn to get by without it.
I tried. I failed. Every time I quit taking Prednisone completely I inevitably had a Lupus and Rheumatoid Arthritis flare up.
I was frustrated and depressed.
I started learning more about anti-inflammatory nutrition. I started making fruit and vegetable smoothies and juicing. I started eating mostly vegetarian. I started drinking 100 ounces of water a day. Under the advisement of a Naturopathic Doctor I started taking anti-inflammatory supplements like glucosamine, Chondroitin, MSM, vitamin D, vitamin B12 and turmeric.
After a couple months I was finally able to stop taking prednisone and not have a lupus or Rheumatoid Arthritis flare up!
Over the past 16 years, since that initial 4 or 5 months on prednisone I’ve only had to take prednisone when I’ve had a severe flare up, which on average has been once every 2 or 3 years.
My flare ups usually seem to be triggered by emotional stress.
I hadn’t taken prednisone for over 4 years until 2 weeks ago when I had to go to the ER for a blood clot in my leg. The Doctors were worried I might have a pulmonary embolism which could kill me.
My Doctor says that because of the MCTD, Lupus and Rheumatoid Arthritis and systemic inflammation throughout my body that I was at higher risk of a DVT blood clot ( Deep Vein Thrombosis). I had no idea I was at high risk. Now I know.
Unfortunately now I have to take blood thinner or anti-coagulation meds (Coumadin / Warfarin) to keep my blood from clotting again.
That’s a major bummer as now I have to be extra careful as to not cut myself or fall and get a head injury or bruise because they say I could bleed out internally due to my thinned blood. Crazy! As if living with Lupus and Rheumatoid Arthritis wasn’t hard enough!
My Doctor told me I will be on Coumadin / Warfarin blood thinning meds for a minimum of a year and probably for the rest of my life.
Initially I got depressed but then I woke up a few days into the anti- coagulation treatment and decided that I’m just not going to accept that.
I have managed my inflammatory disease issues with nutrition and decided to research nutrition to thin my blood naturally. I’ve learned a ton in the past week and am excited to implement my new anti-coagulation nutrition plan.
I will keep you posted on my progress in future blog posts.
Back to the prednisone. My doctor had me on 40 mg of prednisone a day. That’s a lot! I didn’t like the way it made me feel, although my Lupus and Rheumatoid Arthritis symptoms calmed down as did the inflammation in my joints, it made it hard for me to sleep and I felt anxiety.
2 weeks into the process I am now down to 10 mg a day and tomorrow go to 5 mg. In 4 to 5 days I will be going off prednisone completely.
It’s been a long time since I’ve been on prednisone. Like I said, over 4 years. While on prednisone this time around I’ve noticed that in addition to having more energy than normal, my brain is working better. My memory is better and I am articulating thoughts better.
I fee normal for the first time in a long time. I had forgotten how good it feels to have energy and think clearly.
I’ve been living with these health challenges for 16 years so my “normal” is joint and muscle pain, fatigue and low energy. God it feels good to have energy again!
My big fear is that when I stop taking prednisone my energy level will go down and my joint and muscle pain will return.
My Doctor ordered blood tests and of course they confirmed the MCTD/ Lupus / Rheumatoid Arthritis / inflammation throughout my body.
In fact he told me that normally with results as high as mine he would prescribe Enbrel or Humira biologic injections to try and reduce the inflammation in my body.
Then he asked me what I was doing to control the inflammation. He didn’t understand how, with as much inflammation as I had going on in my body how I was even walking around comfortably let alone riding a motorcycle, waking for exercise and living a fairly normal life.
I explained my nutritional regimens to him and he said “well, whatever your doing, keep doing it because it’s working.”
He also said that the biologicals like Humira and Enbrel come with a myriad of challenging potential side effects and he wouldn’t prescribe it unless I absolutely needed it.
I am enjoying being on the prednisone and having less pain and more energy.
I am going to stop taking the prednisone next week and hopefully won’t have any flare up symptoms. I expect for some of the pain, inflammation and low energy fatigue to return but I’m used to that.
In response to the recent DVT blood clot health scare I’ve taken my nutrition program to another level. I’ve been doing my nutritional organic green berry smoothies every day and eating a lot of organic veggies for many years but I only have been juicing twice a year when I do my juice cleanses usually for 7 to day 10 days each time. I started juicing every day again.
Funny how when your told your life is on the line the the motivation to do better shows up.
I’m juicing every day now. I have a green berry smoothie for breakfast, organic veggie juice for lunch and a vegetarian meal for dinner. I am also taking all my anti-inflammatory supplements every day like vegetarian liquid glucosamine, Chondroitin, MSM, Udo’s oil, fish oil, vitamin D, B12 and turmeric.
I am determined to live prednisone free, reduce the inflammation in my body naturally and also to thin my blood naturally and get off the blood thinners.
I even finally started writing a book on anti – inflammatory nutrition for people with auto immune diseases like MCTD, lupus, rheumatoid arthritis, psoriatic arthritis, chronic fatigue syndrome, and fibromyalgia. I’ve been writing every day.
If you suffer from any inflammatory auto- immune disease, please subscribe to this blog site and keep checking back for new articles and nutritional information.
My girlfriend Brandi has been very supportive through all of this. I am grateful to have such an amazing, loving, accepting, patient and kind partner in my life.
She s a great chef too! We’ve created some amazing organic vegetarian, dairy free, gluten free, sugar free recipes that taste amazing. We’re working on some videos which we will be posting on this website soon. She’s the cook and I’m the smoothie and juice guy. We make a great team.
Until next time…. Live with passion and purpose!