We all know there is no cure for lupus. There aren’t even any good treatments for it. We all know that, in spite of websites written by idiots that claim “with treatment people with lupus live a relatively normal life”….which is only true if you mean relative to being dead, we will probably never again be “well” in the normal sense. But we can be better. It’s usually those first years of lupus that are the worst…..before the diagnosis, before we can get our feet under us and figure out how to best proceed. After that, with a lot of research and a little luck, most of us can figure out what it takes to be the best we can be living with lupus. Our best hope in doing that is to become our own advocate.
I have mentioned here that I don’t take Prednisone. In fact, the only prescription medication I take is hydrocodone for pain and even that at a minimum. Instead, over the years and through much trial and error, I have developed my own regimen of over the counter and herbal medications. Being a science geek, I read scientific and university studies and maintain a healthy skepticism towards any medication, pharmaceutical or otherwise. My goal has been to find the best possible balance between treatment and quality of life.
I did this because I am not impressed with what the medical community offers us for a variety of reasons. The side effects of some of these medications are, in some cases, worse than the lupus itself. More horrifying is that, statistically, the treatments for lupus cause a large (if not the largest) percentage of deaths associated with lupus. On top of that, having been in international business has given me insight into it’s underbelly……one of those things you can never “unsee”…..including that of the pharmaceutical companies.
I’m not rabidly opposed to pharmaceutical drugs. I pass no judgment on those who choose to take them. I have made it clear to my doctors that, should my lupus ever get so out of control that my life is in immediate danger I will take whatever I need to take to stop it, regardless. But, until something like that occurs, I would rather deal with it my own way. So far, my doctors have approved of my regimen. The primary role of my doctors is to monitor my lupus. I cooperate with any tests they deem to be necessary. I’m not a fool. I am aware that, at any point, lupus can go out of control and kill me. They are there to make sure that doesn’t happen.
I am in NO WAY suggesting anyone just stop taking whatever you are taking (especially if it’s working for you). All I’m doing here, because people have asked, is listing what I take and why. For those who are interested in doing their own research into alternative treatment, here is a list of what I use.
Natur Leaf (spelled without the “e” in “nature”) – This is my Big Gun and I only use it when I go into a flare. It is a carefully balanced blend of plant sterols and sterolins. There are other brand names with slight variations in the balance between the two. This one has proven to be the best. There are 20+ years of studies behind sterols and sterolins showing great success and it is used by a lot of European doctors. In America it’s practically a secret because it wasn’t developed by big pharma. It works as well as a prescription steroid but without the side effect. THIS STUFF DOES ACTALLY WORK BIG TIME! This is one I tell doctors about regularly and encourage them to read the studies. When I go into a flare I take 3 of these 3 times a day for the recommended maximum of 2 weeks. It has NEVER failed to bring some immediate relief starting with the first dose and will get a flare totally under control in a matter of days. The only downside is it probably isn’t covered by your insurance and costs around $28 per bottle. It takes 2 bottles to treat a flare. But for me it is worth every penny. The side effects are minimal (I’m not even sure there are any) and there are no repercussions as those found in pharma steroids such as loss of bone density. It can’t hurt you so you might want to give it a try and see if it works for you.
Ibuprofen – I think this is a go to for everyone with lupus. When I’m dealing with pain (an every day thing with lupus) I dance between Ibuprofen and pain pills depending on the level of pain. I don’t take either one on a daily basis as each has it’s drawbacks if taken regularly. If it’s a low pain day I don’t take either one. I believe it’s important with lupus to come to the acceptance of living with a little pain and just learning to ignore it. Attempting to live completely pain free can result in addiction to pain pills which comes with it’s own set of problems.
Hydrocodone – I’m going to have quite a bit to say about this simply because pain medication can be my best friend or my worst enemy. There are a lot of “new” pain medications out there with some really serious potential side effects. Some of them came on the market as “non-addictive” and proved, instead, to be quite the opposite. Some of them are off shoots of various anti-depressants and other neuro drugs with additional neurological effects that have nothing to do with pain. Some are not addictive in the same way simple narcotics are but cause such a backlash if you try to stop taking them that they are actually worse than narcotics. I discovered that doctors rarely do research on these drugs and usually just go by whatever the pharma rep tells them. If it all possible, do your own research from several reliable sources and include the experiences of those who have actually taken the drug. Make informed decisions. Hydrocodone is one of a very few simple narcotic pain pill. It deals with pain. That’s all it does.
I have to say this about pain pills. The WORST thing doctors ever tell a patient that is unfamiliar with narcotics is to “stay on top of the pain”. WORST ADVICE EVER. Here’s why. Our brains like narcotics. So much so that studies have shown, with extended use, our brains are actually capable of inventing very real pain to get more. That coupled with the fact that, with regular use, our bodies build a tolerance to narcotics requiring greater and greater amounts to accomplish the same amount of pain relief. At which point doctors want to take you off them or switch you to some dastardly replacement, primarily to stay off the radar of the FDA. Consequently, pain medication should be handled with the utmost care. Add to that that most prescriptions for pain medication dictate way more pain medication than is necessary to get by. I have not had to increase the amount of pain medication I use in 13 years by following some simple rules.
They are as follows:
1) I Do NOT expect to be 100% pain free. My marker is what level of pain is distracting enough to prevent me from focusing on what I’m trying to do. It would be great to take a bunch of pills and be pain free……for a while….but the price isn’t worth it.
2) If the pain is only somewhat distracting I try Ibuprofen instead.
3) I found the LEAST amount of pain medication I can take to get the pain back to the “non-distracting” level. After trial and error I discovered, for me, that is only a surprising 2.5 milligrams. That amount has continued to work to the same level for 13 years. On the occasion that I am in a flare and the pain goes over the top I can double the pain medication and still only be taking 5 milligrams and it will work well. I can do this because……
4) I don’t take pain medication every day. Period. If you do you will build a tolerance and suffer withdrawals if you try to stop taking it or, it stops working. Also, as I mentioned earlier, once your brain becomes accustomed to having narcotics on a regular basis it can create pain for you. And, lets face it, not having pain is great. If you had some injury or surgery that will produce pain for a short period of time, none of this would matter. But we LIVE with chronic pain. So we are left with the choice of either trying to live pain free and risking the myriads of problems associated with addictive drugs, or we can settle for learning to live with some pain and having the ability to control it when it becomes to much without consequence. I usually only take pain medication a day here or there. Rarely do I take pain medication more than 1-3 days at a time before I stop it for a few days. Better to have a few days of pain and be able to control the drugs rather than being controlled by them. Our brains don’t know whether the amount we are taking is prescribed. Our brains don’t care. Taking pain medication “as prescribed” doesn’t prevent it from becoming a problem, In fact, the way some doctors prescribe it it guarantees it will.
5) I can be “on top of the pain” or be on top of the drugs. Doctors operate under some notion that the longer you wait to take pain medication, the harder it will be to get the pain under control. That may be true with extreme pain like immediate post-operative pain but it’s NOT true with chronic pain. It has never mattered how long I waited to decide I need pain medication. When it kicks in, it works. In fact, I wake up in pain almost every morning. Some mornings it’s bad. But, I will almost always wait a few hours before I decide what I may need to do about it…..if anything. I found, for me, just getting up and moving around, or getting focused on something else will, more often than not, result in less pain, sometimes substantially so. If two or three (or more) hours have passed and the pain is still significant then I will act on it. It’s never required more pain medication because I waited. It works the same.
Again, I’m not judging anyone. We’re all just surviving this thing. I just know doctors can fail miserably at keeping us informed …or even being informed themselves. We have to take care of ourselves and be our own informed advocate as much as possible.
Magnesium – As with everything else, I don’t take this regularly. I have found it useful when my muscles decide they will not relax no matter what I do. This doesn’t happen often, but when it does, this seems to work for me.
Pro-biotics – People with lupus are more prone to Candida overgrowth. Terrifyingly, due to the lupus damaging the blood brain barrier, it can actually move to our brains! I take pro-biotics to keep this under control as much as possible. I’m currently unsure if it’s enough should Canadida set up shop in the brain but it might prevent that from happening. So far, it seems to mostly just attack my digestive system. When it does I use pro-biotics and drink Aloe Vera juice (sans additives). That has always worked so far.
Antacids – I have been diagnosed with GERD. Initially doctors prescribes the usual pharma drugs for this and, after reading everything about them, I decided against them. Like most things I have been diagnosed with, they all come and go, depending on what my immune system decides is the enemy that day. If I took drugs regularly for everything I have been diagnosed with, I would be a walking pharmacy. But, over the years, I realized that, unlike a normal person with any one of these things, they are usually temporary and then the lupus moves on to something else. When I go through a bad spell of GERD it can get out of control fast. I mostly deal with it by temporarily drastically adjusting my diet, taking an antacid (as irregularly as possible), drinking aloe juice and………what seems completely counterintuitive……taking Ibuprofen. I know, crazy right? But it has worked more than once, especially if I catch it early. I decided to try that based on the theory that what might be happening is I get a little acid reflux going and then lupus, like it often does, decides to turn it into a BIG EVENT by cranking up inflammation. Apparently, I was right about that.
Wild Blueberry Extract – There are several scientific studies showing Wild Blueberry Extract to do a couple of amazing things. The first being a greatly lessened amount of damage done to the brain of a stroke victim if they had been regularly taking Wild Blueberry Extract prior to the stroke. The second being evidence that Wild Blueberry Extract can reverse brain damage. Considering that I am at high risk for stroke and because of the nasty things lupus is capable of doing to our brains, this one is a no-brainer (excuse the pun). My own experience with it has been to see a noticeable improvement in cognitive ability when taken regularly over a period of time. It can be somewhat costly though so I don’t usually do that. Wish I could. I may try to be more consistent with it in the future. It’s well worth it.
GABA – This is my go-to when the seizures want to start acting up or when I have panic attacks. Right now my new neuro has begun a series of tests to figure out just exactly what is happening in my brain. It could be vascular (Yikes!) but (and what I like about him) he isn’t willing to just prescribe some medication without knowing just exactly what’s really going on. So far, I have found a LOW DOSE of over-the counter GABA can very often stop them before they start really getting worked up. As for panic or anxiety attacks, like everything else, they are not something I suffer on a regular basis. They will sometimes come out of the blue, last several hours, and then disappear after a single event. Sometimes I will have several events over several days. Either way, my assumption is they are lupus related. After reading up on anti-anxiety meds I decided I didn’t want to do that to my brain. Anxiety sucks but it isn’t damaging my brain. If it gets bad, GABA will usually tone it down to tolerable until it passes. (NOTE: I realize that some people have a much larger problem with anxiety attacks on a more regular basis which can be crippling and require greater treatment. I’m not judging here at all). GABA should not be taken on a regular basis because, like drugs that act in a similar way, over time your brain will compensate by naturally creating less GABA, perpetuating the problem. By only using it when necessary, I get that increase when it’s needed without effecting my brain’s natural production.
Taurine – Taurine has proven to be effective with seizures. I don’t like the way taurine makes me feel so I only take it as a “when all else fails” solution. It’s not a one shot remedy but has worked the few times the seizure activity has gotten out of hand and I have to take it over a couple of weeks. But I do always have a bottle on hand just in case. It’s important to note here that I only have Simple Partial Seizures and usually mild ones.
Some additional things I take on occasion:
DGL – enzyme that helps digestion .
Omega 3 – Good for the brain and other things
B Complex – Good for stress among other things
That’s pretty much the list. And, as I said before, this is what I do and why. If any of this helps you, great! But what you choose to do has to be decided by you. Obviously I have great compassion for anyone with lupus and am in support of anything any of us can do that helps and increases our quality of life. After much study and a LOT of trial and error, this is the combo that works for me so far. Hope it’s helpful.