Autoimmune blisters call for long-term treatment
Q #1: A year ago, I broke out with pimples on my back, arms and thighs. They itched so badly I thought I would go mad. A dermatologist took a biopsy and told me it was an autoimmune disease called bullous pemphigoid. I was started on prednisone and doxycycline. When it cleared up, I stopped the medication, but it came back. The doctor said she thinks I’ll have to take medication for the rest of my life. I don’t like taking the medication, as it blurs my eyesight and I lose energy. I also have osteoporosis. I do take vitamins.
A: Bullous pemphigoid is an autoimmune disease that causes blisters, mostly in older adults. The blisters are large and tense (as opposed to pemphigus, a more dangerous autoimmune disease in which the blisters are soft). Bullous pemphigoid tends to come and go over months or even years. A diagnosis is confirmed by a biopsy.
The usual treatment is a corticosteroid, either topical or systemic. Because it was over such an extended area of your body, your dermatologist decided on systemic, at a moderate dose of 20 milligrams.
Prednisone has many long-term side effects, including that of making your osteoporosis worse. Further, I am concerned that the blurry vision could indicate the onset of diabetes or a cataract, as both are strongly associated with chronic steroid use. Your doctor should be testing you for diabetes and treating the osteoporosis, and should ensure that you see an eye doctor.
Certain medications, such as the doxycycline she started you on, can reduce your need for steroids. Other medications used for autoimmune diseases can further reduce the need for steroids, but azathioprine, methotrexate, mycophenolate and others have serious side effects of their own. Although, in some cases, bullous pemphigoid does go away, I agree with your doctor that you are likely to need a long-term medication.
(Q #1: Since I had never heard of such a difficult and painful condition, I had to refer to my Merk Manual. Can’t disagree with Dr Roach’s perspective or conclusion, tho I do wonder why it seems this should be a lifetime issue. I read that treatment began with 40 to 60 mg each morning showing improvement — then, treatment could be tapered downward to a maintenance level after several weeks. Further suggestion reveals occasional new lesions should be disregarded (in the elderly) as increasing the dosage can carry more risk than benefit. Variety of other medicines were described showing 4 to 6 weeks before clinical efficiency is observed. Maybe stuff has changed! Jan)
Q #2: My husband recently developed ulcerative colitis. He was prescribed Lialda and also told that he would have to take it for the rest of his life. He is scheduled for another colonoscopy soon. The medication is very expensive. We are senior citizens with a limited income. Is a less expensive medication available?
A: Ulcerative colitis is one type of inflammatory bowel disease (the other type is Crohn’s disease). It causes ulcers and inflammation in the colon, and increases the long-term risk of colon cancer.
Lialda is a brand name of mesalamine, also called 5-ASA, which reduces inflammation in the colon. I would ask your husband’s doctor about an old formulation of 5-ASA called sulfasalazine.
According to my sources, Lialda costs about $970 a month, and sulfasalazine costs about $45 a month. Sulfasalazine, however, is more likely to have side effects.
Dr. Roach answers letters only in his North America Syndicate column but provides an order form of available health newsletters. Write him at P.O. Box 536475, Orlando, FL 32853-6475; or ToYourGoodHealth @med.cornell.edu .
( Q#2: Once again as in so many other diseases (these days) the cause is unknown. Simply seems to be a genetic predisposition leading to an unregulated intestinal immune response to an environmental, dietary or infectious agent. Sorry, it is impossible for me to accept the “blame the genes” game except in the rare, extreme case.
In this case we are speaking of a retired man who has probably lived more than 60 years and this is a recent development. It isn’t likely to be a genetic thing. This couple is living on Social Security income alone for which his doctor has prescribed a costly medicine they can’t afford. Tell me again how great American medicine is . . . .
The wife seeks help for her husband who is suffering. Their doctor may as well have told them to get the Hope Diamond and all will be well. Simply useless. At least Dr Roach offered a comparable med at a more reasonable cost point. But I would look in a different direction, because that’s the way my mind goes.
I need to seek causation and remedies the body can welcome — not be further burdened by [as in anything chemical] prescription pharmaceuticals. To begin, one needs to know what this patient has been eating, not just now but throughout his life – i.e. what does he eat? Gotta be major clues there. [you are what you eat, can digest and utilize]. Also, ‘food combining’ is so much more than people think. Probably not one in 10,000 even give a thought to this simple but vitally important concept which I have gone on and on about for years, so won’t cover now. [either find it among the posts here or go online and ‘google’ Hay Dieting Method. Its a question of what foods can be eaten together and which must be eaten separately, e.g. don’t eat proteins with starches at same meal, etc.,.] One of the main reasons this matters so much is because of DIGESTION. If food isn’t properly digested, it winds up in the intestinal tract, and putrefies. When combining food correctly – no problem. If you fart a lot, you’re not combining your food right! And you aren’t being nourished correctly either. Nor is your immune system likely to be healthy because it too, is probably gasping for life. This is after all, the essential home of our immune system — the gut, where food is finally passed through the gut lining into our system for nutrient to be utilized. Ain’t gonna happen if you’re suffering with Ulcerative colitis. Can’t — so you are either starving or mal-nourished. one begins to fail, chronic diseases take hold, systems break down.
But that downward spiral doesn’t happen overnight – – there is generally years in the making thru improper diet and lack of healthy nutrient. Life doesn’t have to be this way. Most people however eat processed food [something in cans, boxes or packages and bottles — Standard American Diet – SAD diet.] None of it much better than eating paper or the boxes. What is needed is fresh fruits and vegetables, pastured animal protein [the way they lived naturally], real eggs naturally raised, nuts, seeds. . . you get the picture. Dairy isn’t needed by humans. We are the only species to continue drinking milk after being weaned from mama’s breast. It’s practically a no no to consume calcium tablets for it is little better than eating chalk. What we really need is those wonderful, colorful fresh veggies [called greens]. For those who do consume milk products, it should be organic and preferably “RAW”. .the way the cow gives it. The largest animals eat plants and that is all it takes to grow those large sturdy bones. Paleo’s Dr. Loren Cordain explains the essential of truth about bones and the need for calcium balance. Not just calcium we ingest — but it’s how much we are loosing by dietary impropriety, calcium can be leeched right out of our bones. So yeah, it’s what we eat alright!
So here we are with a nearly kaput immune system and the whole damned cavity is bleeding and on fire. What to do? Most modern docs will have you avoid fruits and veggies cause your gut can’t take it. Obviously, that painful colonic environment is gonna need some kind gentling, but one can’t get well without nourishment. It is good if not best to focus on fruits and vegetables to nourish and heal the body, but digestive processes must of needs be prioritized here, so juicing would be the perfect solution to get the healing going. Beg, borrow or steel a juicer, you both need one. Can use varieties of red, yellow and green plants. I still juice in order to keep on keepin on, but I always include fresh piece of ginger and several toes of garlic – both healing and delicious, 3-4 #’s org carrots, couple batches Dandelion greens [good for inner organs], kale, spinach, celery, etc
I’m a coffee drinker too, and I love my morning cup (organic coffee, Paleo style, using some coconut oil , little cinnamon and dash of milk or creamer, all whipped up with a stick blender — better than the Latte shops and serving my brain’s needs at same time.]
Try to use GREEN TEA which is kinda like a medicine for the immune system. Has polyphenols w/great antioxidant and anti- cancer properties. It is wise to rid yourself of certain foodstuff that are known to have deleterious effect on the immune system such as grains and dairy. Sugar however is the GREAT offender to any person’s health, but is especially toxic to the immune system. If you must sweeten anything, please use a fully natural substance like the leaf Stevia or Lohan.
Other healing herbs are Hawthorne, Turmeric, Ginkgo biloba and Ginger. More of nature’s nutrients which are very useful in enhancing the immune system are vitamins C, E, A and B complex, reduced L-glutathione, selenium, zinc, magnesium, Co Q-10, and DHEA.
- Zinc is known to increase the size of the thymus gland which is the powerhouse of one’s immune system and improves T-cell functions and can actually repair gut cells — many with bowel disease have this deficiency. The major thrust – the top priority is to repair the immune system so it can heal the body
FLAX is especially rich in Omega-3 fatty acids which are essential to human life which of course are key in influencing immune function and inflammatory functions while playing a key role in heart function, hormone production, brain activity as well as making healthy skin and hair and membranes throughout the body.` DHA and EPA constitute essential fatty acids. As a heart patient, I have been accustomed to taking a whole lot of fish oil, gagging mercilessly with each pill. One especially needs the DHA for maximum boost, yet EPA was the dominant element in fish oil capsules. I was delighted to find a product by NOW [and there are others, but I like NOW] which has double the the dose of DHA 500 mg to the EPA’s @ 250 mg. Cut the quantity of pills and the gagging altogether. No burping the fish oil afterward either. . . .just sayin’ This sea vegetable source DHA has shown immune benefits in reference to cancer (colon and liver), MS and other diseases of inflammation, rheumatoid arthritis, asthma, inflammatory bowel disease such as ulcerative colitis and Crohn’s disease as well as inflammatory skin disorders. (Would probably help the lady in Q#1 with her blistered skin.).
Flare-ups are a part of inflammatory bowel diseases; with both quiet and active times. When getting nourishment into the body is a problem, liquid diets are favored for those flare-ups. This can be herbal teas; high protein broth [such as fish, chicken or meat broth] and fresh vegetable juices. The body can absorb essential nutrients without having to do all the work of digestion of solid foods.
Too often people with inflammatory bowel disease are iron deficient. This can be resolved by eating some beets almost daily. This is easy enuff to do in several ways. I was anemic for some years, apparently and was told by my most beloved doc to eat some beets every day. But, I protested — I hate beets, can’t I take a pill or something. No she said, the best way to get the iron you need is just a little bit of beets every day. synthetic preparations won’t get the job done. My mother-in-law taught me to make beet borscht. . .and I fell in love. Anybody needs the recipe, let me know. I have also learned to buy julienne canned beets to put in my salads – forgive me purists out there. And of course, since I’ve been juicing, I throw in well scrubbed beets and some beet leaves too.
Just a couple more healing points and I’ll wrap this up: GLUTAMINE nourishes the small intestine. This amino acid they say feeds the cells lining the small intestine. It can help correct the malabsorption of nutrients and relieve symptoms. Some naturopaths recommend a supplement cal-butyric acid believed to help cells in the colon regenerate and get and stay healthy. For maximum absorption a product called Cal-Mag Butyrate is recommended.
For the inflammation, there’s another home remedy with the herbs Boswellia and Turmeric which are both strong anti-inflammatory herbs with minimal side effects and combined and also supplies extracts of sea cucumber, called “MARINECARE”
My last recommendation I generally would urge all to embrace and that would be FERMENTED VEGETABLES. I have my how-to-do-it up back a few years or five(?). There is nothing else coming from a kitchen which can improve health, heal the intestinal flora better than any other effort imagined. There is nothing else which can give one more of the B vitamins in a simpler, more delicious way. The rules aren’t hard and fast, one can get creative mixing choices as one’s fancy takes it. After much researching and effort and satisfaction, I wanted to share. True, I almost spit it up it was so surprising and well – awful. But I had invested all the time and research and bit of money — wasn’t just going to toss it! So I wrote to one I really liked and sorta took her advice on [and recipes]. By the time she got back to me a day or two later, I had almost gotten “used to it.” Had been an Ice cream and or chocoholic (fond of sweet) and my veggies were all sour and vinegarish took me some getting used to. Then by golly, I was in love again and chocolate no longer seemed so important to me. There is no vitamin B pill around which can hold a candle to this dish. Nothing else can insure that your immune system is indestructible and will always protect you. May die in a car crash, but not cancer. Well, there you go, got carried away again. . . Jan