Wednesday, March 16, 2011

Alternative Medicine for Scleroderma

Hope I don’t wear out your eyes with this one! I found info from several sources, but the best was “Natural Remedies for Scleroderma” by Alan R. Gaby, MD, published in the peer-reviewed journal Alternative Medicine Review in 2006. You can read the full text at http://www.altmedrev.com/thorne/index.php?sobi2Search=Natural+Remedies+for+Scleroderma&search=Search&searchphrase=any&excludeCat=293&option=com_sobi2&sobiCid=0&sobi2Task=search&reset=2&Itemid=70.

One problem with research on scleroderma treatments (standard or alternative) is that the disease is rare. It’s hard to find enough patients to run a good study. Another problem is that scleroderma symptoms float across many different diseases (like lupus, for example). Finally, mysterious diseases attract the worst of alternative medicine, so we have to be cautious. There is no cure for scleroderma, but there are treatments for the disease and its symptoms.

1. Meditation – Jon Kabat-Zinn Ph.D., at the University of Massachusetts Medical Center, has conducted decades of well-controlled studies showing that body-scan meditation relieves pain. For example, one study randomly assigned pain patients to 10 weeks of standard pain clinic treatment or to body-scan meditation. The meditators showed 36% pain improvement compared to 0% in nonmeditators; 87% mood improvement compared to 2% in nonmeditators; and 77% distress improvement compared to 11% in nonmeditators. The program uses a very specific technique, building gradually to 45 minutes a day. Bill can do it in his hospital room, starting any time.

He can learn more about Kabat-Zinn’s program from a story on (his favorite!) NPR: “Meditation a Hit for Pain Management” broadcast on March 1, 2007, http://www.npr.org/templates/story/story.php?storyId=7654964. The story includes a sample 8-minute guided body scan meditation to try for a few days. If it’s helpful, Kabat-Zinn has an audiobook and four guided meditations at http://www.amazon.com/Mindfulness-Meditation-Pain-Relief-Reclaiming/dp/1591797403/ref=pd_sim_b_5. Most people have to practice daily for a week or two before they begin to feel the effects.

2. Stretching – Simple stretches of any part of the body, even just fingers and toes, can relieve pain, improve circulation, encourage relaxation, and counteract skin tightening. Heating up a body part before stretching it will increase the range of motion.

3. D-penicillamine: This is a by-product of penicillin, with brand names Artamin, Artin, or Cilamin. It can’t be taken with drugs that suppress the immune system, but perhaps Bill will be off those drugs in the future. It has produced improvement in multiple sclerosis, certain forms of cirrhosis, and rheumatoid arthritis, and is sometimes prescribed for scleroderma. Adverse effects can occur, so a rheumatologist needs to prescribe and monitor. Can lead to zinc deficiency. http://www.mgwater.com/autoimmune.shtml

4. Minocycline – long-term antibiotic sometimes used to treat scleroderma. Some medical researchers suspect scleroderma involves an infectious agent, so maybe that’s why D-penicillamine and minocycline are prescribed. I’m not sure. The trouble with this option is that minocycline increases BUN levels, exactly the levels that dialysis is aiming to reduce. The website about this drug says it is not for patients with kidney disease. http://www.drugs.com/pro/minocycline.html.

5. Glucocorticoids – This is a class of steroids like cortisone, prednisone, dexamethasone. Long-term use has significant side effects: immune suppression, weak bones, potential interference with kidney treatment. Bill’s MDs would need to say whether this option is safe for him.

6. Colchicine – This is a drug for gout that reduces uric acid in the body. It is sometimes prescribed for scleroderma, but should not be used with liver or kidney disease. Sounds like a good one to avoid. (Fear Not; better options are coming!)

7. Autologous stem cell transplant – This is extremely experimental and has only been done once or twice for scleroderma in Europe. In highly oversimplified form, they take stem cells from your body while your immune system is strong. Then they kill off your immune system in the hospital. If you survive (sorry, my bias is showing), they inject your stem cells back into you. These stem cells grow into a new immune system. (I fail to grasp the logic here; if the old cells had an autoimmune disease, why wouldn’t the stem cells grown from them have it too?) You can see that I would shout out a big fat “no” on this one. I don’t think Bill’s body is strong enough to withstand it, and I’m not convinced that it’s anything more than fancy snake oil. A bunch of cancer patients were harmed with similar blood marrow transplants in the 1990s. http://www.synnovation.com/sclerodermafaq.html

8. Iloprost, Procardia, or Yohimbine Hydrochloride – Aha! These are “very effective” treatments for Raynaud’s. Iloprost is given by IV over several days, and one side effect is that it improves kidney blood flow. Procardia helps Raynaud’s but often creates esophageal heartburn in scleroderma patients. A supplement called Yohimbine Hydrochloride is effective but doesn’t produce the heartburn. www.synnovation.com/sclerodermafaq

9. Acupuncture – can help Raynaud’s and relieve some pain. It should be done by a licensed acupuncturist with lots of experience and training. There are few disadvantages to trying it.

10. Evening Primrose Oil – This supplement contains a prostaglandin that increases capillary blood flow in Raynaud’s. In one eight-week study, one group of Raynaud’s patients got 2 grams three times daily; the other got a placebo. The group that got evening primrose oil had significantly fewer attacks of Raynaud’s. 

11. PGE-1 – The prostaglandin (called E-1) in evening primrose oil can also be given  intravenously to help Raynaud’s by increasing capillary blood flow.

12. N-Acetylcysteine – Raynaud’s attacks decreased significantly over an 8-week period after five days continuous infusion of this stuff. I don’t know whether it’s an alternative supplement or a pharmaceutical drug, but I can find out if Bill wants to try it.

13. Vitamin E - 200-1200 IU daily can help scleroderma’s thickened tight skin, calcinosis (hard white lumps beneath skin near knees, elbows, fingers), and Raynaud’s. It is also said to inhibit the autoimmune attack process in scleroderma and to inhibit the growth of fibrosis (like they found on Bill’s kidneys), though I didn’t find evidence for this. May be taken orally and also applied to thickened areas of skin. Gaby recommends rubbing Vitamin E onto ulcerated gangrene fingers.

14. Photopheresis – I’m trying to offer info, not opinions, but this one sounds kinda flaky. The idea is to to suppress and break down collagen, which is over-produced in scleroderma. They remove blood through the equivalent of a dialysis machine, bathe certain types of cells in a drug, then expose those cells to ultraviolet light. Once the process is complete, they add the blood cells back into the body. I didn’t see evidence of effectiveness, but must admit I didn’t look too hard on this one.

15. KPAB (potassium para-aminobenzoate) – This is a form of PABA supplement that softens thick hardened tissue (internalor external) and allows it to stretch. Half of 390 scleroderma patients were given 12 grams daily; the other half were given a placebo. The rate of decline in lung function was significantly less in the KPAB group than in the  placebo control group. Five-year survival rates were 89%, compared to 70% in untreated controls. Ten-year survival rates were 77% compared to 57%. This study was done in scleroderma patients who were in the early stages of the disease. Similar studies on people who had lived with scleroderma for an average of 9 years showed no improvement. KPAB can damage the liver and has caused one death, so if Bill tries it, his liver function needs to be monitored. Hypoglycemia is a possible side effect that can be controlled with diet.

16. S-Adenosylmethionine – To improve scleroderma skin problems, this is given intravenously daily for two months, orally thereafter. 10 patients of 15 showed improvement, but there was no control group.

17. Zinc – Many scleroderma patients have a zinc deficiency that can be treated with zinc supplements.

18. Ananase or Bromelain – Another common problem in scleroderma is trouble swallowing and closing or opening the hands fully. This medication helped with both problems, but only in one patient. The source suggested that Ananase is no longer available commercially. Still, I thought it was worth mentioning because of Bill’s swallowing and hand problems. Perhaps it’s available by prescription?

Please remember that supplements can be dangerous and are not tested by the FDA, so it will be important for Bill’s doctors to check for any potential drug/supplement interactions and to monitor his liver and kidney function while he tries them. Mary Clem and other bloggers might have better knowledge of these various options--I'm only reporting what I've found.

Heading out to the forest for the mushroom hunt. Will keep eyes open for Winnie the Pooh. J   --Janet







1 comment:

  1. Impressive amount of information. How to get this info. to Bill's doctors?

    ReplyDelete