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Category: low dose naltrexone (Page 2 of 3)

My Sjögren’s Update (And It’s Not About The Book!)

December 7, 2013 / / 1 Comment

I think it has been a little while since I have posted an update about how I have been doing medically. There are many reasons for that; I was away on my honeymoon, I have been tied up with the book being published, and most importantly, I have been feeling better.

I started back on Plaquenil sometime in August as it was clear that the alternative medicine treatments alone were not doing the trick. They help, a lot, but they were not enough to keep me from having more complications, such as with my bladder. I wasn’t doing terribly, but there was a lot of room for improvement, hence why I went back on Plaquenil. I never thought Plaquenil did much for me in all the years I was taking it, which is why I stopped it in February, but I may have been mistaken on that.

By the middle of September, I was still having a lot of issues with increased joint pain, especially in my shoulders, hips, and hands, swollen lymph nodes that were causing some alarm, fatigue, and this new interstitial cystitis issue with my bladder was still not under control. I had gotten a lot of relief with the bladder issues after going in for surgery to have a hydrodistension done, but my symptoms were starting to return, although not nearly as severe as in previous months. My urologist and I came up with a plan to start bladder instillations every two weeks for twelve treatments…at a hospital two hours away from me. Oh, the joy!

Since I was leaving on my honeymoon for Disney (we were married in May) at the end of September, I decided to heed my rheumatologist’s advice and go back on prednisone, hopefully for the short-term. About eleven days before we left, I started on 20mg once a day of prednisone. Within 72 hours, the change was dramatic. My joint pain was resolved, I had more energy, ALL of my bladder symptoms were completely gone, and within another week, my lymph nodes were back down to an almost normal size. We even decided to hold off on the bladder instillations.

Now, I have a long and intense history with prednisone use which you can read about if you go back to the main page of this blog and click on the prednisone tag under “labels”. It has been quite a while since I needed to be on prednisone for longer than a week and notoriously, I have a lot of side effects which make me want to get off of it as soon as possible. This run with it, initially, was much easier and it makes me wonder if my alternative medicine therapies had anything to do with that. I was getting so much accomplished; I even took up running! I did have to stop my alternative therapy, low-dose naltrexone, because I thought I had too much energy and because both medications give me insomnia, I wasn’t sleeping well. Coming off the low-dose naltrexone helped tremendously.

I was doing so well that it made me wonder if maybe the risk of staying on a higher dose of prednisone long-term was worth it. That whole quality of life over quantity thing and all. I began to realize that if I could stay on this dose, I could probably start thinking about going back to work part-time, or at least on a per-diem basis. After a few weeks, I weaned the dose to 15 mg and was still doing well, and then went to 12.5 mg and then 10mg. Within a week of being on 10 mg, I really began to struggle with my symptoms again so I went back to 15 mg, knowing that I had a rheumatologist appointment coming up soon.

Two weeks before my rheumatology appointment, things began to get tougher for me. I was still feeling good on the 15 mg, but I had put on a lot of weight, despite exercising 4-5x/week. Fifteen pounds to be exact…in less than two months. That, I could deal with. More concerning were the mood swings I was beginning to have. I was struggling (and still am) more than people knew with depressive mood swings, anxiety, and becoming easily frustrated. I tried to keep my head down, but it was wearing on me. The good thing about having been on prednisone so often is that I knew it was medication related, and I have a lot of experience at managing these symptoms. But, it was kind of putting a big damper on that whole “better quality of life” thing. I have had bad prior experiences with psychiatric medications and for me, they are not the answer, so I worked on increasing my exercise, exposure to sunlight, stress management, etc.

I did talk to my rheumatologist last week at my appointment about the side effects. My blood pressure was also elevated and the only time that happens is when I am on larger doses of prednisone. She told me it was time to come down on the prednisone. I will be honest, I was very upset. I explained to her that I tried that already and after much conversation, she made me realize that I came down on the dose too quickly. I have a bad habit of trying to do things my way and you know what? I am sick of it. Historically, I get no benefit from being on less than 15 mg of prednisone but this time, I am doing it her way. Not 50% her way, or 80% her way, but 100% her way. So we are weaning the prednisone down by 1 mg every two weeks until I get to 10 mg and then we wean it 1 mg every MONTH. The goal is to get on as low a dose as possible…or even off of it.

I don’t have any other treatment options at the moment besides my Plaquenil and alternative treatments. We had discussed the possibility of enrolling in a clinical trial for a new medication, but I was disqualified from entering into the study because of my lymphoma and radiation treatment history from seventeen years ago.

I am scared and I am discouraged. I don’t want to go back to feeling the way I did over this past summer, or even last year. The only analogy I can think of is that it is like being blind…getting your vision back for a few months…and then being told you will likely be blind again in a couple of weeks or months. Yes, I know being blind is extremely difficult, but it is the only analogy I can think of to explain the terrible feeling that comes with it. Don’t get me wrong, I am SO grateful for these past two months. I have accomplished much and literally have made the most out of every single day I have felt better. I have had a few wonderful adventures and done things I never thought possible. But at this point, I have to trust the opinion of my doctor and that being on prednisone at the dose I was on, on a long-term basis, is not in my best interest. I have to have hope that maybe I will not backslide too much.

But what is in my best interest? Struggling to get through every day? Going on and off prednisone every couple of months to quiet things down temporarily? Wondering if the back and forth on the prednisone is better or worse for me in the long run as compared to just staying on it? There are no clear answers and unfortunately, my doctor and I do not have a crystal ball to predict the future. So I am hanging on tight to my faith as I begin the slow journey of cutting back my prednisone. I will have to tighten up on my diet, self-care, and likely restart my low-dose naltrexone.

The good news is, I will likely lose some weight and my moods will definitely even out. I am sure my husband will appreciate the latter.

Faith.
Hope.
Courage.

And here we go….

Continuing Down The Road Of Integrative Medicine

May 3, 2013 / / 3 Comments

So today is my birthday and no, this is not a post about how great birthdays are; even though they are great! Rather, I am giving myself the birthday gift of writing a quick blog about something important to me and maybe to you too. With our wedding coming up in fifteen days, my writing frequency has taken a sharp decline lately, hence why it is important that I hunker down and get this written so that I can then take my pooch out and enjoy this beautiful day.

As I wrote in a previous blog Going Down The Road Of Integrative Medicine, since November, I have been going to a wellness center in a nearby town to see an integrative medicine doctor in the hopes that they can help resolve some of my autoimmune issues. Because let’s be honest, I have been treated for Sjogren’s syndrome for over five years now by traditional doctors and I haven’t really gotten too far. Actually last year, I would say that in many aspects I even got worse. I have some very excellent specialists who know what they are doing but I am beginning to learn that chronic illness, especially autoimmune disorders, are extremely difficult to manage and treat. When they are treated, it usually means with potent and caustic medications, some of which can eventually kill you. The medications used treat the symptoms, not the cause of the illness.

Don’t get me wrong, I am not abandoning traditional western medicine. I feel strongly that there is a place for medications like steroids and stomach acid blocking medications (PPI’s). However I also feel strongly that staying on these medications indefinitely is not the answer to managing my Sjogren’s. For someone else, it may be and that is OK. But there came a point last year where I looked at my medication list and it contained about fifteen different prescription medications. And I was still pretty sick.

As I wrote about in the previous blog, I began my integrative medicine journey by starting an alternative medicine for autoimmune illness called LDN and I also started with allergy testing. Since then, I have spent countless hours, fifteen hours to be exact, having extensive intradermal allergy testing done. I was shocked by the results. I am allergic to most molds, weeds, grasses, and trees as well as cats and dust. I now receive five allergy shots every single week.

As many of you know, I also changed to a Paleo diet. This was not suggested by my integrative medicine doctor but rather it was something I researched on my own. I strive for an 80% compliance rate with this way of eating.

However as the months went on, I started to become frustrated with my integrative medicine doctor. I felt very rushed during my appointments and I didn’t feel like I was being treated as a whole person, which is an integral part of this modality of treatment. I was anxious just going to these appointments. I wasn’t getting returned phone calls in a timely manner over an issue that was pretty significant at the time and I felt like my practitioner and I were not connecting in a therapeutic way. He wasn’t the right doctor for me.

However I had been doing a lot of research about the use of integrative medicine in treating autoimmune illness and on top of that, I really liked the rest of the staff at the wellness center. I looked into switching to another provider. I have to be honest, this was very difficult for me because I still have a hard time advocating for myself at times. Especially since this is a relatively small practice and I knew there was a chance of running into my old provider. But at the end of the day, my health and wellness is the priority.

Yesterday was my second visit with my new practitioner. I will call her S. She is a physician’s assistant who is new to the practice. This did give me pause when I made the appointment because I wanted to make sure I saw someone with experience. I decided to take a leap of faith and it certainly paid off.

I never feel rushed during my visits with S. and she made it very clear that she is there to help me get as healthy as I possibly can. One of her concerns was about the GERD medicines (PPI’s) I am on due to my Sjogren’s. I knew there were risks to long term use of these medications (Nexium and Zantac) but I didn’t know the full scope of the risks and issues associated with their use. If you do a Google search of “risks with PPI’s”, you will see what I mean. She also explained to me about how our body needs stomach acid for proper digestion and that it is likely I am not absorbing the nutrients and supplements that I am taking because I am suppressing my natural stomach acid. It seems counterproductive to me to eat very healthy and take supplements if I am counteracting their effects. However I also know that my reflux issues are real and severe due to my malfunctioning esophagus. I have had some relief from dietary changes but it hasn’t been enough.

S. suggested two supplements that I can take for my stomach (Mastica and Zinlori 75) that helps restore the natural state of digestion, rather than suppressing it. She told me to stay on my prescription meds until these have a chance to kick in and then if I feel comfortable with it, to start weaning off of them. She compared the PPI’s to prednisone. They both suppress the problem but they do nothing to solve it.

This is where things become tricky for me. I do realize that as my prescription med list shortens, my supplement list gets longer. And I am OK with that because it is part of getting my body to heal itself and I imagine I won’t be on these supplements forever. I have also noticed that as the shift occurs, I am starting to feel better. However the issue for me is trying to deal with all the other specialists that prescribe these medications. To them, they are doing what they think is in my best interest but they are not the ones living with the consequences of these medications; many of which sometimes don’t even work all that well.

So I had a heart to heart with S. about this. I explained to her that I take a lot of crap from my other doctors for going to the wellness center. There is an incredible amount of resistance in the medical world to the concept of the body being able to heal itself. I have already had to deal with my rheumatologist and pulmonologist regarding this and now I am going to have to face my gastroenterologist who is old school and most likely will flip out over me weaning off my meds. S. was very supportive about this. She gave me a great pep talk about continuing to advocate for myself and my body. She said that it is my choice to take her recommendations and there is no pressure to do so. She spent a lot of time printing out some appropriate articles for me that may be helpful to present to my other specialists. Our discussion reminded be that I am strong and resilient. I have to remember to be that way when I go to my other doctor’s appointments. S. made me feel like we are partners in this journey and it was in that moment that I knew I could trust her. I knew she was the right fit for me.

I will be honest, the road of integrative medicine is still a very scary road for me. It defies everything I was taught in nursing school. It defies everything I have been told by the bazillion doctors I have seen over the years. That being said, I know in my gut that something about it feels very right to me. As my medication list shortens more and more each week, I look at where I am now compared to where I was at this time last year and the evidence is there. I may not be a vision of perfect health and I may not be in a place to go back to work yet, but I am definitely several steps closer.

I know that what may work for managing my health may not work for everyone. But I am taking the time this morning to write this because I want people to be aware that there are other options to treating your autoimmune illness, as well as the many other chronic illnesses. There are answers and soutions beyond the pharmaceutical industry and I think we all owe it to ourselves to explore as many of those options as we can whether it be vitamins, supplements, diet, exercise, massage, acupuncture, meditation, stress management, yoga, reiki, prayer…whatever it is that you feel comfortable trying. Open up your computer or visit a bookstore to learn more. Don’t settle for what you’ve been told. Don’t settle for the words “there is no cure.”

Learn.
Fight.
Reclaim your body.

The Paleo Lifestyle

March 30, 2013 / / 8 Comments

I have made a grave oversight. I was planning on writing an update today on how the Paleo lifestyle (I hate the word “diet”) has been going for me. I was scrolling through my blog posts to see what I wrote during my first Paleo blog entry and guess what? I never wrote one!

I meant to, I really did. But I started my thirty days of a strict autoimmune Paleo lifestyle the day before my fiancé’s mother died and it was not the priority. So now I am going to give you the recap of the past two months.

I am not going to spend much time describing the Paleo eating plan because a Google search can give you more information than you ever could possibly want. Basically it means that you eat whole, non-processed foods just like our ancestors did. Meats, vegetables, fruits, nuts, seeds, certain natural oils such as olive oil and coconut oil. No dairy, grains (even gluten-free grains are off limits), legumes, sugar (except naturally occurring sugars in fruits), soy, and refined seeds oils such as sunflower, vegetable, and corn oil.  Now, I had done a ton of research about this for a good five months before I even attempted changing my eating because I was going to go one step further. I was going to do the autoimmune protocol of the Paleo lifestyle which meant I was eliminating nuts, seeds, eggs, tomatoes and all tomato based products, eggplant, alcohol, potatoes, peppers, and certain spices that are pepper based such as chili powder.

Have I mentioned how much I LOVE potatoes? And gluten/dairy-free pizza??

So I embarked on my little experiment and after the thirty days, I decided to add seeds and nuts back into my diet. Adding one food back in at a time from the autoimmune protocol list is allowed so that you can see what you can tolerate. From time to time, I will also have a pepper based spice because I absolutely love buffalo chicken; which I make at home.

I will be honest, this lifestyle change has been one of the hardest things I have ever done in my life and trust me, I have had my challenges! I went through terrible sugar withdrawals the first two weeks or so and I found it very challenging to eat anywhere besides in my own house. However I was reading anecdote after anecdote of people with autoimmune disorders who were having improvement in their symptoms by eating a Paleo food plan. If there was even a chance that I could avoid going back on steroids or maybe even become more functional because of what I was eating, I had to stick with it. The Paleo lifestyle is also not just about what you eat. It’s also about moving your body, attempting to reduce toxins in your environment, and cutting back on stress.

Before I started the Paleo lifestyle, I had been eating gluten and dairy-free for a year. While I do think that helped a bit with my symptoms, it wasn’t enough. However when I look back to what I was eating, a lot of it was processed dairy and gluten-free foods. I stayed away from anything high in fat because I wanted to lose weight. I would eat a whole bowl of rice for lunch on many days. A food that probably spiked my blood glucose levels. If you are interested in the Paleo concept, I suggest that you do some research on what causes people to get fat and unhealthy. It is not the 85% ground beef you are eating, but rather the copious amounts of starches and sugars we eat in processed foods. There is a lot of scientific theory to it and rather than pretend to know exactly everything behind it, I am going to refer you to two books that I found extremely helpful: The Paleo Solution by Robb Wolf and Practical Paleo by Diane Sanfilippo, BS, NC. And again, there is always Google!

Bottom line is that I have learned fat is not the enemy. I will admit, I am still skeptical about the whole concept, but I am going for routine blood work next month which also screens my cholesterol, triglycerides, etc. so I will be interested in seeing the results of that blood work.

I guess one of the biggest questions I get is what do I eat? I eat a LOT of fruits and vegetables and I eat a lot of meats including beef, pork, chicken, turkey, fish, and on occasion, bacon. I now eat nuts and seeds including cashew butter, sunflower butter, etc. I cook and eat only coconut and olive oil as much as possible. Some Paleo enthusiasts say you should watch your fruit intake if you are trying to lose weight but I feel strongly that I need the nutrients of the variety of fruits that I eat and my primary goal right now is to be healthy. If I lose weight, great. If not, oh well.

I have had to completely retrain my way of thinking in terms of meals. No more cereal, pancakes, or yogurt for breakfast. Often I have leftovers from dinner the night before. The variety of food I have tried in the past two months has increased by at least fifty percent. I have discovered a love for sweet potatoes and a hatred for avocados. As often as possible, I eat grass fed and wild caught meat and fish in order to avoid hormones and other nasty things that grain fed animals eat. Eating out is even more of a challenge than when I was only restricting my gluten and dairy intake but is getting easier. We don’t eat out all that often but when we do, we chose a place that will not think twice about accommodating my needs. I have to say that I actually enjoy eating out more now because I am eating higher quality food as opposed to fried and processed food.

Overall, I would say that I am about 75% compliant with eating Paleo in the past month. After the first month, I realized that I had to make this a lifestyle which meant making it doable. Progress not perfection became my motto. Most Paleo proponents state that the goal should be to be eating Paleo 80% of the time. Although my basic diet is meats, vegetables, fruits, nuts, and seeds, I do indulge in a regular meal or food from time to time but I make sure it is something I will absolutely enjoy every bite of. For example, last week I was on a six day course of steroids for non-autoimmune reasons and I decided I had to have a buffalo chicken pizza from a local establishment. And a regular beer to go with it. Typically, when I eat something non-Paleo, I still make sure it is gluten and dairy-free but I needed that one exception on that particular day. I enjoyed it and the next morning, I was right back on track. Some people may say that I am not doing the autoimmune protocol properly. I say that I am living my life.

I did a little experiment several weeks ago where I went off my Paleo eating plan. My fiancé and I were going out of town to visit family and I wanted a weekend where I didn’t want to have to think about what I was going to eat. I even ate macaroni and cheese! After several days of that, I can honestly say that I was ready to go back to Paleo. My joints hurt more than usual, I felt like I had the flu, and I was craving salads.

The bottom line is: Overall, I am eating healthier than I ever have in my entire life. I cannot remember the last time I had a bowl of rice and I don’t even miss it anymore. I am feeding my body whole, nutritious foods. And I have lost weight. Not a lot, maybe a pound every two weeks but what has been more noticeable is the change in my body shape. Fat is turning to muscle. I don’t feel bloated anymore; unless I eat buffalo chicken pizza!

More importantly, let’s talk about my autoimmune symptoms. First I have to disclose than I am also taking a new alternative medication called low dose naltrexone (LDN) which I think has also benefited me so it is hard to ascertain if the improvement is due to my diet, allergy shots I have been receiving, the LDN, or most likely, all of the above. I am currently off steroids and my other autoimmune medication, Arava. That fact is simply amazing. I do have some joint pain but this is precipitated by exercise and/or not enough sleep. My dryness symptoms have improved somewhat which was recently noted by my eye doctor. My asthma is under control and the biggest change I have noticed is an improvement in my reflux and esophageal dysmotility symptoms. Fatigue, unfortunately, is still a major issue at times. I have not noticed any improvement in my Raynaud’s symptoms. I still struggle day to day much more than the average person without an autoimmune illness but at this point, I am struggling less than last year at this time.

Now could all of this be coincidence? Possibly. Maybe I am just in an upswing with my illness. But I am going with the theory that time will tell and meanwhile, I have absolutely nothing to lose.

Low Dose Naltrexone Update

February 23, 2013 / / 11 Comments

It’s Saturday morning and a perfect time for blogging. Life has settled down quite a bit here over the past few days. Life has been nothing but complete chaos and stress since about November and despite the fact that I think I have handled the stress fairly well, I am praying for no more crises for at least the next few months. The rest of the year would be nice too!

I have been playing catch up this past week with a lot of things I have neglected as of late, namely wedding planning, housework, and agent hunting for my book. More importantly, I have been trying to catch up with those friends and family that I have been neglecting and I am slowly but surely accomplishing that. I also have a list of health related blog topics in my head that I really want to write about as there has been so much going on and I think that the experiences I have been having might be useful for people to read about.

I think today I am going to start with an update about how I am doing with taking low dose naltrexone (LDN). I have been getting e-mails from people asking me if the LDN is working, if I am having any side effects, etc. The first post I wrote about LDN you can find here: Low Dose Naltrexone. If you have an autoimmune disorder, I think the post is worth a read. LDN is also being used for other illnesses other than autoimmune diseases but I try to write about what I know based on my experience and that experience is with taking LDN for Sjogren’s syndrome.

When I wrote the first blog entry about LDN, I was five weeks into taking it. Now I am about ten weeks into it. Since the five week point, I have been able to completely finish weaning off of prednisone. This was no small feat mind you. I had been taking prednisone for about fifteen continuous months, with the exception of one month where I had weaned off and had to go back on it. I did have some difficulty coming off the prednisone and the withdrawal symptoms were tough for the first two weeks or so, but my body seems to be slowly adjusting.

Before I came off the prednisone, and while on LDN, there was a period of about three weeks where I was feeling amazing. I mean, AMAZING! I went into my rheumatologist’s office for a routine appointment and told her that I had not felt that way since before all this autoimmune fiasco began, which was five years ago. Can you imagine feeling like yourself for the first time in five years?!? It was incredible.

However of course that did change when I stopped the prednisone but I am trying to be patient and give my body the time it needs to adjust. Part of thinks that it would have been nice to not have messed with the prednisone and enjoyed feeling good for a while longer. However the other part of me felt stronger that I did not want to be dealing with prednisone withdrawals and possible flare up issues closer to my wedding, which is three months away. This weekend it will be one month I am off the prednisone and that is usually my tipping point for things to go awry so I am crossing my fingers. Speaking of awry, at this point I am only having two issues, severe itching and hair loss. I thought the issues were related to coming off prednisone or perhaps even related to an autoimmune flare starting, but it appears this is probably not the case. I will hold off on the details of that situation for now until I have more information.

Overall, I think the LDN has had a positive effect on my autoimmune symptoms. When I came off the prednisone, my migraines initially got worse but are improving with the help of a supplement I was given by my integrative medicine doctor called petadolex. I have begun to have some minimal joint pain in the mornings that quickly goes away but other than that, I seem to be holding steady in regards to my pain levels. I have managed to wean off my steroid inhaler and currently take no medications for my autoimmune related asthma. That is a big deal. I am off my prescription migraine medication, another autoimmune medication called Plaquenil, and a medication that was being used to stimulate saliva called pilocarpine. I have noticed a small improvement in my dryness symptoms. My use of pain medication and Motrin has decreased.

I am able to do short periods exercise on a regular basis and am having less painful after-effects of the exercise as compared to before LDN. With the exception of the time period after I stopped prednisone, I have noticed an improvement in my mood and anxiety levels. I have not noticed any improvement in my esophagus/swallowing issues since starting the LDN. I had a few meals where I forgot to take my Procardia, which enables me to swallow more easily, and I immediately regretted not taking the medication. The LDN also has not made a difference in my reflux issues. The debilitating fatigue that I experience improved initially but I have been struggling with my energy levels since coming off the prednisone.

The only side effect I have noticed from LDN is insomnia. It has improved over the past month to the point that I am willing to continue riding out the side effect because the benefit is worth it right now. I am experimenting with some different natural solutions to this problem and it is also worth noting that I was having some insomnia issues prior to starting LDN.

So that is the scoop. I do have to mention that in addition to starting LDN, I have also begun going for allergy shots every week and have drastically changed my diet to an autoimmune protocol of the Paleo diet. However I did not start either of these treatments until after I had that three weeks of feeling great so I do strongly believe that the LDN has been a contributing factor in some of the improvements I have experienced. I am still on 3mg and am holding off on going up to 4.5mg until my insomnia is more under control as lack of sleep is a huge trigger for autoimmune symptoms.

Am I still skeptical? Sure. The improvements I have had could be a fluke but I don’t think so. I do think it is a situation where time will tell for sure. My goal is for LDN to keep me off the steroids. If that is the only benefit I get, it will be worth it’s weight in gold.

Low Dose Naltrexone

January 9, 2013 / / 54 Comments

In my last blog entry I discussed my current experiences with an integrative medicine doctor. (Going Down the Road of Integrative Medicine). In that entry, I mentioned a new medication I was prescribed by this doctor called low dose naltrexone (LDN) and I think that it is worthy of its very own blog entry so here we go. Be forewarned, it’s a bit complicated…

Since we have the modern day miracle of Google, I am not going to spend a lot of time describing LDN and exactly how it works, but I think there are some basics that are important. Naltrexone is a medication that was created in the late 1970’s as a treatment for heroin overdose and subsequently used in larger doses (50-300 mg) to treat heroin addicts. It blocks the opiate receptors in our body, which are also found on immune system cells. The next discovery, in the 1980’s, was that naltrexone at lower doses (hence why it is called low dose naltrexone), blocks these opioid receptors and increases the endorphin levels in the body, which were noted to be low in people with autoimmune disorders as well as in many other illnesses, such as cancer and AIDS. At lower doses, such as 3-4.5 mg, the LDN blocks the opioid receptors for a short time, a few hours. Once this blockade wears off, the body responds by increasing its production of endorphins and this results in cellular changes that inhibit cell growth, inflammation reduction, and healing. It is not an immune booster or suppressor, but rather an immune regulator.

OK, whew. That hurt my head. I have found two books to be extremely helpful in understanding LDN. The  first is: The Promise of Low Dose Naltrexone Therapy by Elaine A. Moore and Samantha Wilkinson and also Up the Creek with a Paddle by Mary Boyle Bradley.

Now, when my integrative medicine doctor told me that he wanted me to try this medication, he did not make any promises or unrealistic claims about its effectiveness. He did refer me to the website:
http://www.lowdosenaltrexone.org/ for more information. However after scouring this website, I became skeptical about the medication. I had a hard time believing that one medication, as seemingly harmless as this one, could effectively treat all the diseases that it claimed it could: autoimmune disorders, many types of cancer, and AIDS. Because if it was that effective, why were so many people still sick? Why didn’t more doctors and patients know about it?

After about a month of online research and reading the above two books, I had to admit that I was very intrigued by the positive effects LDN was having on some people with autoimmune illnesses, specifically multiple sclerosis (MS). Sjogren’s syndrome and MS can share an uncanny amount of similarities in terms of symptoms and many people with Sjogren’s are originally misdiagnosed as having MS. I also read many anecdotes about the success of LDN on other autoimmune illnesses such as Crohn’s disease and rheumatoid arthritis.

So WHY don’t more people know about this? Many proponents of LDN therapy claim that it is seen as an alternative therapy and that its use is not widely recognized because there is not enough clinical research done on the positive effects of the medication. There have been some small clinical trials done at a few very noteworthy medical institutions, but it has not been studied on a large scale. Why not? Well, pharmaceutical companies fund these trials and naltrexone is a generic, very inexpensive medication to produce. According to LDN proponents, there is no financial incentive. Despite the fact that this may sound like a conspiracy theory type of thing to a lot of people, with my less than favorable experiences in regards to the pharmaceutical industry, it all makes sense to me.

As I see it, there are two issues with LDN. The first is that the one major side effect it has is insomnia. This is something I have been struggling with significantly since last Spring, possibly due to another medication called Topamax. The second issue is that because it blocks opioid receptors, you CANNOT take any narcotic pain medications while taking LDN. If you do, you have to stop the LDN. Luckily, my rheumatologist is not a big fan of using narcotics to treat Sjogren’s related pain issues and I have adverse reactions to many narcotics anyways. Because of this, I have worked hard at learning and utilizing other pain management techniques. When things are really bad, I do resort to a pain medication called Tramadol. Because of its mechanism of action, Tramadol is a centrally acting analgesic, rather than a true narcotic. However I was instructed that if I do take Tramadol, to space it four hours apart from my nightly LDN dose.

LDN is routinely taken between 9pm-2am although some people say that it can be taken in the morning. However since endorphin production is highest around 2-4am, it is thought that this is the best timing for the highest effectiveness. LDN also needs to be specially compounded by a pharmacist and not every pharmacy does this. I get mine from Skip’s Pharmacy in Boca Raton, Florida. One month supply, not covered by insurance, costs me about twenty-five dollars with shipping.

So five weeks ago, after much trepidation and research, I decided to just go for it and I took my first dose of LDN. To begin with, the only side effect I have noticed is the insomnia and I will admit, it is pretty rough and worse than before I started the LDN. I have since weaned myself off of the Topamax, which I take for severe autoimmune related migraines, in the hopes that will help alleviate the insomnia. I already have a lot of alternative methods I use to help sleep such as meditation, herbal tea, etc. but like clockwork, I wake up between 1-2am every single night after going to bed around 10pm. Sometimes I fall back asleep and sometimes I don’t. However that all being said, I have been battling a bad viral infection this week and have been sleeping better. Not sure if that is because I am sick or not. Because sleep deprivation is a trigger for worsening of my Sjogren’s symptoms, before this week, I had been taking a sleep medication two to three times a week to help me catch up on my sleep. I was told by Skip’s that the insomnia should improve and possibly even go away within the next few weeks.

It is very hard to see a benefit from a medication like this when you have recently started other treatments as well. I started an autoimmune medication called Arava in October and an eye medication called Restasis in November. Except for a week exacerbation of joint pain on my third week of LDN, my joint pain has significantly improved and my eye doctor told me last week that my eye dryness has improved. LDN related? Possibly.

Since stopping my migraine medication, I initially had a week of migraines and they have since resolved. I am hoping it stays that way. If I continue to have a significant reduction in migraines or even complete resolution of them, I will absolutely attribute that to LDN because prior to LDN, I could not function without Topamax.

The improvement I have noticed, that I know cannot be attributed to other medication, is in my overall well being and my energy level. It is difficult to explain but does make sense considering LDN affects our endorphins. I feel more able to effectively cope with my physical symptoms when they do arise and my mood seems more stable. This is significant because I am still in the process of weaning off prednisone. There has also been a decrease in my anxiety level to the point that this week, I can say I have no anxiety at all. That is also significant as I am still waiting for some test results and this would naturally produce some anxiety for me.

At first, I did not see the improvement in my energy level. It was subtle. I also am not sure if it can be attributed to the Arava as well. Although I am still extremely fatigued by about 4-5pm each day, I have noticed that my days are becoming more productive. This is highly unusual, actually unheard of, when I am weaning off prednisone.

And that is where I am at five weeks into my LDN journey. In my head, the jury is still out as to how effective this treatment might be for me long term. I am hopeful.The signs so far are positive and I think time will tell; especially once I am completely off prednisone and hopefully the Arava as well. I also think that it is not a treatment that when used alone, will cure me. Rather, I think it is one more tool, along with exercise, supplements, diet, stress management, and multiple other modalities, that can be used in my long journey to improved health.

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