Prednisone and Lupus, Rheumatoid Arthritis, Inflammation, Auto-Immune Disease

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!

Dave

13 Comments

  1. With a blood clotting disorder, called anti phospholipid syndrome, biologics like Humira can cause a deadly lupus flare. My son had arthritis and lupus, with a known clotting disorder, went on biologics and lost his battle to a fatal lupus flare over a year ago at age 36 . Your doctor should know this about biologics and a blood clotting disorder with lupus in males. It is rare but the clotting disorder happens more often in males. Dr. Petri is the world renowned rheumatology researcher who knows all this at Johns Hopkins in Baltimore. It was a different doctor who put my son on biologics, not knowing the risk. Dr. Petri told me what caused the fatal flare. With your condition, never try biologics.

    My son was on a paleo diet. He researched and tried everything. Gd help you because you are doing so well. My son also went off all prednisone and all medications, but he regretted going off plaquinel. That helped reduce pain, but takes three months to build up in your system; worth the wait. He had no visual side effects from it.

  2. Hi Carol – thanks for the comments. Very sorry to hear about the loss of your son. Not only was I not aware of the potential dangers of biologic meds I had no I idea I was at high risk of DVT blood clot and pulmonary embolism.
    I had been doing so well with my nutrition regimen that before 2 weeks ago I hadn’t been to the Doctor in over 4 years.
    I thought the pain in my calf was a lupus flare. I walked around in pain for 8 days before I finally went to see a doctor. They did an ultrasound and sent me straight to the ER when they found the blood clot. I know I am fortunate I survived and am committed to my nutritional regimen.
    My message to anybody dealing with an auto-immune inflammatory disease – if you have pain in your calf or leg, get to the doctor ASAP as it could be a blood clot. Like I said – I had no idea I am at higher risk of a blood clot due to systemic inflammation.
    I am aware I am at higher risk of heart disease due to inflammation. I’ve been doing green berry smoothies and juicing for over a decade so my nutrition is good. My cholesterol is low – 130 when tested 2 weeks ago and my blood pressure is great – I am certain it’s because of my healthy nutritional choices. I try not to eat meat, dairy, sugar and wheat / gluten. It makes a huge difference in how I feel and definitely shows in my low cholesterol and God blood pressure so I am not too concerned with heart disease. A day at a time! God bless!

  3. Hi Dave, I found your blog through Brandi’s Facebook posts. The first one I read was about your blood clot- scary! Glad you found out in time and glad you listened to the wise women in your life.

    I was fairly recently diagnosed with ME/CFS, so I am looking forward to your book on anti-inflammatory nutrition. I’ve also really appreciated the information about prednisone- it’s an option my doc and I have discussed for when I have a flare up/crash. I’m hypersensitive to medications and their side effects, so I’m very cautious about what I take.

    I live with chronic pain, inflammation, and gut issues and have been trying all sorts of dietary solutions. I have cut out gluten and processed sugar (for the most part!) and even high sugar fruits. Also upped my fish intake (salmon, for the most part) and take vitamin d supplements. Just started taking turmeric as well. Some relief, but not where I’d like to be.

    I was looking into to the modified paleo diet for autoimmune diseases. Have you tried it or something similar?

    It would be great to get a handle on this through diet, but I’ve heard mixed results from other ME/CFS patients. It’s great to read your blog and see someone who’s had quite a lot of success controlling an autoimmune disease through diet.

    Thanks again,

    Katy

    • Katy, not sure what ME/CFS is, but GI [gut] health is extremely important. Coconut oil is wonderful for GI health and overall cell function. Put a glob of in your morning hot tea or coffee or eat it straight. Ghee is also very good for you in much the same way. I made my own from pure butter for my son’s lupus dietary needs.

      Probiotics help balance, after any antibiotic abuse in childhood or any recent imbalance. Most cultures as in real cultured, not pasteurized sour craut [sp?], kim chee, pickle barrel pickles which are not ever heat treated to kill the live cultures in these foods, help balance the GI. Some doctors would scream about live cultures, but GI health is the wave of the future of general good health among alternative MD’s in Functional Medicine departments.

      I drink kombucha which has the active “mother” culture and billions of probiotics, in it and also use apple cider vinegar with the “mother” culture in it. Use sea salt with 70 minerals still in it, not bleached out as in table salt. I could go on and on, but maybe this is elementary; maybe not.

      Although not for everyone, I am paleo, low carb and high fat and have escaped gallbladder symptoms, for years; still have;my gallbladder. On a vegetarian diet, my gallbladder was screaming, but with paleo, no symptoms, only if I cheat. There is a great book, Eat fat Loose Fat by a PhD and an MD, in University of Maryland and it validated my paleo diet. I have always been slim and maintained that saturated fats have a bad rap, but whatever works for you is best and vegetarian is important for you, Dave.
      Carol

      • Thanks for the tips Carol. Most of this is fairly new to me and there is SO much dietary information out there, it’s hard to know where to start.

        ME/CFS- Myalgic Encephalomyelitis or Chronic Fatigue Syndrome as it is generally called in the U.S., which is kind of annoying because debilitating fatigue is only one of many symptoms we experience. It’s a puzzle, but essentially the immune and nervous systems are whacked. The immune system works on overdrive all the time, as if you are sick and fighting off a virus, which to me, at least partially, explains the fatigue. The connective tissue is where I feel the chronic pain, it’s a weird burning tingling pain. My massage therapist (and my chiropractor) is actually the one who explained the fascia to me- part of the nervous system, it’s a layer connecting the muscles to the dermis. Apparently a big part of what makes up the fascia is collagen. This might be more than you ever wanted to know, but I’m still learning myself and I find it interesting that I never heard about the fascia from any traditional medical doctor. :/

        Anyhow, the immune system works on overdrive until it crashes. I get sick a lot. I had 3 sinus infections this winter. I also have trouble kicking infections when they hit, so I do take antibiotics, even though I don’t like to, but I’m at risk for pneumonia, so what can you do? I have GI problems anyway, but from the info. you provided, I’m sure the 3 rounds of antibiotics this winter didn’t help. I have started taking probiotics, which have helped a bit.

        I’ve been reading about coconut oil, as part of the modified paleo diet. Definitely going to try it now, thank you. And I agree, GI health as it relates to overall health is the future and I don’t think it’s going to be limited to alternative practitioners. At least I hope not.

        Everyone’s different for certain. I eat meat in moderation, but try to stick with fish if possible. And after reading dave’s comment about meat causing inflammation flare ups, I may try cutting other meats out completely. Thanks again and be well.

        Katy

  4. Hi Katy –
    Thanks for commenting on my blog site! So sorry to hear about your health challenges with ME / CFS. Pain, Inflammation and Fatigue suck!
    I wish you well in your journey to discover nutritional solutions to reduce pain and inflammation in your body.
    Fatigue is the worst for me. I work from home so on a bad day I don’t even want to go up the stairs!
    I am doing exceptionally well today – thanks to the prednisone. 2 weeks ago when I had the DVT blood clot scare I was on 40 mg prednisone a day. Today I’m on 5 mg and plan to taper completely off by Friday this week.
    Although I absolutely love the energy and reduced inflammation I experience while on Prednisone. I know chronic prednisone use can do damage to the body.
    This whole DVT scare was the impetus to return to a strict NUTRITARIAN diet (mostly veggies and some fish) and eliminate all inflammatory foods.
    To me that means no dairy, no meat, no sugar (except for natural sugar in fruit) no wheat or Gluten and no processed foods.
    I’ve been fairly consistent over the years, having my organic green berry smoothie almost every day, but when I’m feeling good I tend to start eating some meat, dairy, wheat and sugar – albeit in moderation once or twice a week with the rest of my diet consisting of organic veggies and wild fish (no farmed) only.
    Look where that got me – in the ER 2 weeks ago!
    Brandi has RA so she has inflammation issues as well. We have learned to cook mostly vegetarian dishes that taste great. My favorite is Portobello stroganoff using organic quinoa flour for noodles (Brandi makes her own)
    The sauce is made from organic veggie broth and gluten free flour. We are working on adding the recipes on my Healthy Recipes Page. Working on some videos as well. Check back in a few weeks!
    I’m back on a strict organic vegetarian diet -green berry smoothie for breakfast, organic veggie juice for lunch and vegetarian meal for dinner. I eat a lot of organic quinoa – quinoa is a perfect protein with the complete amino acid protein chain. Tastes great too!
    I will be blogging a lot more, am in the middle of writing my Anti-Inflammatory Nutrition book and also going to create some videos for our yummy vegan, gluten free, dairy free and sugar free recipes.
    I’m a food addict! I love a good burger or pizza but I just cant afford to eat that stuff anymore so the key for me was experimenting with healthy foods to create healthy organic vegetarian meals that taste great! Brandi’s a great cook so that helps a lot! I do most of the smoothie and juice making and she does most of the cooking.
    I also take supplements -most importantly the Wellesse liquid vegetarian glucosamine, chondroitin and MSM. Costco usually has it in stock. I also take vitamin D, B12 and both fish oil and Udos’s oli. (udo’s Oil is a balanced blend of omega 3 /6 /9 fatty acids from seeds ) Udo’s oil is available at most vitamin and supplementt stores and stores like PCC and Whole Foods. It’s refrigerated.

    Just like it took a long time of eating unhealthy to get sick, it takes time for clean nutritional eating and supplements to heal the body.
    As far as the Paleo diet my personal opinion is that it is healthy for people without auto-immune connective tissue diseases. It’s mostly healthy fruits and veggies. No Dairy, grains or processed foods if I remember correctly. Only part I disagree with as someone with auto-immune inflammatory disease is the meat. I do eat meat, occasionally. Right now I’ve cut it out completely for awhile because I am determined to eliminate inflammation from my body naturally.
    I do eat fish – but only fresh fish, never farmed. Brandi makes a great baked gluten free breaded Alaskan cod to die for! One of my favs!
    Hardest part for me is eliminating wheat / gluten and cheese. I love a great burger and also pizza – but that’s the reason I got sick in the first place! Those are occasional treats for me sometimes when eating out. We’ve developed alternatives that taste good so we don’t feel deprived!
    Brandi’s working on an organic raw cashew based gluten free and dairy free white sauce we can use in the veggie lasagna and as a sauce for gluten free veggie pizza. I’ll post it when we get it perfected!

    Keep in touch and take good care of yourself Katy!

    • Thanks for your reply Dave. I have kinda been wrestling with trying the modified paleo diet, mostly because dairy is going to really be a tough one for me to kick. Can substitute coconut milk for the cream in my coffee, that’s no problem. But Greek yogurt, it’s a dietary staple for me. I eat it pretty much every day- it goes down easy and stays down when I’m nauseous and/or have no appetite, which is often. And it’s high in protein which is good since I often can’t stomach meat. Another ME/CFS patient told me about a coconut yogurt alternative which I have yet to try. Cutting out gluten and sugar hasn’t been too, too hard. But the modified paleo is really extreme with the no grains (or maybe it’s no refined grains? It’s really hard to keep all of this info straight) or legumes whatsoever thing. I have to make sure I get enough calories since my tendency is to lose weight for seemingly no reason, so I was kinda left thinking, well what CAN I eat???

      But I’m determined to reduce inflammation and pain too, so I might follow your lead and cut out dairy and meat, except fish of course, and see how that goes. I also would love to start juicing. Don’t have a juicer, have been buying fruit/veggie juices at the store- they’re a great way to get nutrients and juice goes down easily for me too.

      Have not heard of Udo’s oil, will look for that. Hempseed oil also has an omega 3/6/9 ratio, if I recall correctly. And I LOVE quinoa pasta, don’t have to convince me on that one. I like it better than wheat pasta.

      Thanks again and be well. Following your blog now and admiring the pictures of yummy looking food that Brandi posts on Facebook.

      • Good Morning Katy –
        Ugggh! Being on prednisone is wearing on me! I was up till 2:30 AM and awake at 5:30. Cant believe I’m only sleeping a few hours a night. Normally when not taking prednisone I am fatigued and sleep 8 or 9 hours a night. Sleep is important, usually if I don’t get enough rest I am more susceptible to a flare up.
        Good news is only a few more days then I’ll be done.
        I love the energy though. Prednisone is definitely a double edged sword!
        I friend requested you on facebook – from Brandi’s friend’s list. She said you live local so I’d like to invite you over for dinner Thursday – if that works. we’ll cook an awesome vegetarian, gluten free, dairy free meal and we can talk nutrition – if your up for it! Your welcome to bring anyone,
        I am passionate about this health stuff and love to share it. Message me on facebook and we can coordinate.
        If thurs doesn’t work then we’ll have to wait until we get back from our trip – we leave Sunday to go to Maui, Hawaii for 2 + weeks. We’re actually looking for a place to live there because my body does much better in the humidity. Not sure if it’s barometric pressure or what – but it definitely helps.
        I’m right there with ya on the dairy – I’ve really struggled with letting go – especially coffee creamer and cheese.
        I use goat cheese -thinking it was better. But it’s really not. It still has lactose and casein. The 2 big culprits in dairy when it comes to disease and inflammation.
        In the coffee I use coconut “cream” which I get at Trader Joe’s – comes in a can. Looks like shortening. It’s semi solid. I pop a Keurig cup in, run a cup O’ Joe -pour the hot coffee in the vita mix blender, add a spoon of coconut cream and whip it up. Taste like a latte. Only NO DAIRY! It was a game changer for me!
        Plus the coconut cream has healthy fats in it and no dairy.
        Cheese is another matter. There is just no substitute.
        Brandi’s working on a organic raw cashew white sauce as a replacement for mozzarella and ricotta in veggie lasagna – but that remains to be seen! So many cheese substitutes or meat substitutes just really aren’t very good. And I don’t eat soy. 90% of all soy and corn are GMO – Genetically Modified. Some research on soy talks about possible connections to how it may affect the endocrine system or are hormones. I just stay away from it. Never liked soy milk, tofu or soy cheese and meat substitutes anyway.
        I do still eat some cheese -but really try and limit it. That’s a tough one!
        Another food sensitivity for auto-immune inflammatory issues I recently learned about is nightshade vegetables.
        Nightshade vegetables are peppers (bell peppers, jalopeno, cayenne) potatoes, eggplant and tomatoes.
        I eat a TON of peppers – I love spicy foods! I was juicing with tomatoes! Crap! So my knee was really swollen – I cut out the peppers and tomatoes for a few days and the swelling went down. No more peppers or tomatoes for me. Amazing how you think something is good for you and then learn it may be harmful.
        Anyway – connect on facebook, we can chat about thurs on messenger – or when we get back from our trip. Look forward to connecting and supporting each other on this crazy auto-immune inflammation nutritional journey! Have a great day!

        • Dave, warms my heart that you are so on target with diet, no night shades and could get together with Katy and possibly move to a warm, humid climate with all the pineapple you could eat. The bromine is so good for your conditions!!! Just be careful of mouth sores with fresh pineapple. Maybe coat with coconut oil, first. Thanks for the Trader Joe’s coconut cream tip. All so vital!

          Avocado is a good one, to add for many reasons and easy on the gut. Eventually, make your own kombucha for between meal probiotics. Try to find Bragg’s apple cider vinegar with the mother. Ie unpasteurized and fermented for your alkalinity.

          Prednisone is wretched for sleep; so true about the double edged sword. My heart goes out to you.
          Love to you and Brandi!!!
          Carol

        • Ah! No sleep sucks. I have insomnia sometimes as well, just naturally, but my energy level is low whether I get 4 hours or 10. A poor night’s sleep can throw me into a crash too though so I know exactly what you are talking about. Prednisone does sound like a double edged sword- I would love to have energy but I needs my sleep!

          I didn’t see your friend request on Facebook, so I sent you one. I have a blue ribbon for my profile pic (ME//CFS Awareness) That is so kind of you and Brandi! I have tentative plans on Thursday, but not 100%. Will try to find out for certain and let you guys know for sure ASAP.

          🙂 Katy C.

  5. Hello Again Carol! You point out a very important issue – and that is that everybody is different. We all have to figure out the right combination that works. I eat very little meat simply because I have learned it can effect inflammation, a great read on animal protein sources in a 30 year study in China, is “The China Study” by Thomas Campbell and T. Colin Campbell.

    We are all different. When I learned about Alkalinity it was a game changer for me. When I do a juice cleanse it always affects my alkalinity level in a positive way (more alkaline than acid). Drinking a good alkaline water and alkaline green drink mix can help with that as well.
    Anyway -good to hear from you again Carol! We’re all in this together so love when people share their insights and info!

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