I'd like to be more excited about the announcement of a new drug specifically for lupus called Benlysta. I really would. But it is effective in about 42% of patients, and the placebo worked for 34%. And I am certain, with this being a genetic tweaking kind of drug, it's going to be very expensive. In fact, I'm sure it is, as Glaxo-Smith Kline is aleady referring to it as a "very major" opportunityhttp://www.forexyard.com/en/reuters_inner.tpl?action=2009-11-12T205006Z_01_N12429750_RTRIDST_0_HEALTH-SUMMIT-GLAXOSMITHKLINE-BENLYSTA
So I'm sorry. I appreciate all the hard work and even more the fact that someone is trying to develop something specifically for lupus.
However in my mind, the next great hope for autoimmune disease is something that has been around for a while and is cheap- and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system or screw with your genes.
I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.
My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!
So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.
Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."
I just took my first dose as of 11/16/09. If it is going to be effective for me, I should notice improvement in 1-2 weeks. It tastes gross, but hey, it's only 1 milliliter. Not any worse than prednisone. I'm already gluten and dairy-free, and off opiate pain-killers, so the typical interfering factors are a non-issue. Here's hoping.
To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
A doctor talks about the effectiveness of LDN for autoimmune disorders, specifically RA and Systemic Lupushttp://www.youtube.com/watch?v=nttilGKpJvU
update 11/22: not quite a week on the LDN. I've had really uncomfortable fibro pain all week, which actually started before I started taking the LDN, but once you start LDN you can't take narcotics anymore. So, I was left with picking from my basket of old tricks I've used for the first 15 years of this illness, during which no one ever gave me any narcotics unless I was in the hospital. Hubby gave me shoulder rubs, which gets the pain from (scale of 10) from a 10 to, say, a 6. Used capsacium (Salonpas) patches which helped get it down to a 4. Still makes it hard to sleep. Taking Aleve and/ or prescription aspirin, shaves the pain down to a 3, slept propped up for several nights. I have only 2 nights of insomnia, a side effect of LDN for some people.
update 11/29: The pain is still not under control but I do seem to have more energy- I can do more in a day- and my brain fog is nearly gone. For the last year, I've barely been able to finish a sentence without losing my train of thought, and that is not much of a problem this past week.
From what I've seen, it's going to take 1-6 months for the LDN to really turn around the whole autoimmune process, but if it really turns it around and getes my body to stop attacking itself (and does so without side effects and causing weight gain, mood swings, hair loss and serious illnesses such as diabetes and osteoporosis, a la prednisone) then it will have been worth having to give up my sure-fire narcotic pain relief short-term to just not have pain long-term.
update 11/30: i upped my dose from 2.0 to 3.0 tonight. I was in constant pain all weekend, all around my upper body, which I think I've traced to having carried my guitar around in a gig bag on my back both Friday and Saturday. The cold air is also not agreeing with my lungs- my chest feels really tight.
I overheard some guy tonight blabbing about how he lost a bunch of weight by just going jogging twice a week. he seemed to believe that anyone could lose weight that easily. it made me really mad, because he put out so little effort and almost painlessly met his goal. I feel like i make so many changes and sacrifices and sometimes don't see any results, and just have to keep giving up more and more and more things - first no overexertion and no sunshine, then no soda; then, no bread, no lunchmeat, no dairy. And still my numbers are terrible and I'm in constant pain. And now, no painkillers. What's next, no smiling? i shouldn't have to work this hard to feel normal! what the hell went WRONG?! OK, just had to rant for a minute. Makes me crazy when healthy people take their well-being for granted and they can't imagine why everyone else can't just go jogging and have the weight fall off, or lose 2 pounds every morning by peeing, or drink a red bull and power through it all.
Anyhow my current idea about what to do next if the LDN doesn't start showing results ASAP is to do a Candida cleanse (this is strongly encouraged by those who know about LDN)- meaning give up EVEN MORE foods (temporarily), including all sugar, even fruits, take some herbs, and kill off the yeast in my gut. Yeast overgrows if 1) you eat/ drink too much sugar 2) your immune system is compromised by stress or immune suppressants, such as prednisone and cellcept, which i've taken 3) anitbiotics. I did the candida diet both the other times I took prednisone, in 1994 and 2002, but haven't done it since the 2006 hospital stay/ year-long prednisone usage. Dreading the cleanse, feel like I've already sacrificed enough by going vegan and gluten free and giving up diet soda and giving up my narcotics and being in pain for the last 2 weeks, but i absolutely must get to the bottom of this thing, or i'm going to end up even worse off - back on prednisone, moonfaced and hairless, biding my time til my turn on the gurney, lining up to have my bones replaced after the drug eats them away.
update 12/3 (Day 17 on LDN): I'm now taking 4.5 mg a night. well turns out some of that shoulder pain was caused by carrying around the guitar on my back. I know that because that alone has cost me enduring days of shoulder pain before. And also now that my "Aunt Flow" is here, 3 days early , as usual (If she's always early then I guess early is the new "on time" for me), I am starting to get some relief from the pain. Also aided by icy hot, my husband giving me several back rubs, and me doing chi gung, and doing tons of shoulder rolls. I also listen to relaxation tapes when I go to bed, and try to breathe *into* the pain and tightness, instead of breathing shallowly to avoid pain. It's hard for me to measure how anything else is doing in regards to the LDN - the pain kind of swallows up awareness of anything else. I've been staying up til 5am because i can't stand going to bed when I hurt. Turning off all the lights and distractions and lying down and putting weight on my hurting shoulders just magnifies the whole thing 100-fold. But I do seem to be less forgetful and mentally foggy. Once the pain completely dissipates I'll have more perspective on everything else.
update 12/10 (day 24 on LDN): After seeing the acupuncturist last week, I now know that the shoulder pain I've been blaming on lupus and fibro is probably caused by playing guitar. I had a great acup. treatment with needles, TENS unit and cupping. It got rid of 80-90% of the pain. Hubby continues to give me back rubs to keep it under control, and I got another treatment today. Dr Wu (my acupuncturist) asked me for my lab results so she can make a case study of me. She has completely turned around the health of people with lupus before. I'd like to be in that company. Meanwhile I've been able to cut my sleep med in half since starting LDN. Which means I'm less groggy and less brain foggy. I continue to stay gluten-free, vegan, and no aspartame (diet soda, or anything else with nutrasweet). I also added taking liquid vitamin D to the mix, as most Americans have vit D deficiency, and it is linked to autoimmunity. Normally you get your vit D from the sun, and people with lupus have to avoid the sun. So you'd think that we would be ordered to take vit D, wouldn't you? Too obvious?
Also, someone suggested that since LDN is supposed to be taken in sync with your biorhythms, between 9pm and 2am, that we should account for dalylight savings time. So that means to take it between 8pm and 1am. I've set an alarm on my digital watch to make sure I take it before 1am each night (I'm still a nightowl).
When I get better (not if, but when, because I've done it before) it may be hard to trace it to one thing, because I'm doing acupuncture, taking vit D, changed my diet and started LDN. However, I went gluten free 1 year before starting LDN, and gave up nutrasweet 2 years before. I went vegan 2 months before, and before starting LDN, after all those changes, my numbers were not improving. I always need more than just diet. Diet and acupuncture alone would do it, and did it before. But then I got sick as soon as I hit immune challenges (mold exposure, stress). Therefore I'm combining the 2 things that worked before, plus LDN and vit D, in hopes that I'll get better faster and stay better longer. I'm feeling very positive about this path.
update 12/13: shoulder pain is back, kept me up most of the night. used ibuprofen gel, heating pad, suction cup massager, helped long enough to fall asleep, but not all night. I seem to need a massage every few hours. Of course this attack was brought to you courtesy of driving 500 miles and playing 2 shows in the course of 24 hours. Meanwhile (knock on wood) It's been a while since I've had to take anything for a headache and I don't seem to be having pain anywhere else (such as elbows, knees, ankles, fingers, which often swell and hurt when the disease is active). And my, um, bathroom results are back to normal (had a few days of- let's call it "doing number 3").
update 12/20: shoulder pain still bugging me. About every 3rd night I get some deep sleep. other nights, I feel like i never really fall asleep, just because of the pain. So it's still hard to tell how I'm doing otherwise. Just spent 3 days in puerto rico thawing out and swimming (wore my 50 SPF shirt when in the sun; i'm not a fan of sunscreen because of the chemicals, although i have some organic sunscreen that I used on my face and hands). last week i started taking oil of oregano 2-3 times a day to kill off the candida problem, which surfaced last week, a few weeks after starting the LDN- I hear that is not uncommon, and that it can be hard ot make much progress until the candida is under control. Keepin the faith! I got all my tests to go negative (in the positive sense ) last year; I know I can do it again.
update 12/28: shoulder pain, unrelenting. using massage, ibuprofen gel, TENS unit, chi gung, and sleeping on couch where i can prop up so it hurts less. had some headaches and stiff swollen fingers and toes over xmas for 1-2 days. Still taking the anti-candida stuff (oil of oregano). Athlete's foot has resurfaced on left foot, probably connected to the candida resurfacing. Some say the LDN will bring the candida problem to the surface. I now have LDN pills as well as liquid. I prefer the liquid because pills stick in my throat and take a while to get into your system. And the liquid is cheaper if you buy the 50mg pills and dilute it yourself. But I prefer to travel with pills since the liquid has to be refrigerated and i never know if the airport security is going to take away the liquid, leaving me with no medicine for the length of a trip. I am very conscious of that fact that if I want to heal I need to slow down and rest more, do less. The cold weather is not helping matters, so i'm trying to hide indoors as much as possible. Every now and then i'm tempted to take a narcotic but to do so I'd have to quit the LDN and I'm not going to quit it until i see whether it has improved my blood tests. I have to give it a chance to work. Next tests: around Jan. 11.