"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: low dose naltrexone (Page 1 of 3)

Low Dose Naltrexone

This is not going to be a lengthy entry. It’s one I wasn’t even planning on writing, but I wanted to share something with you all. I get e-mails from time to time from readers asking about how things are going for me with using low-dose naltrexone (LDN). My LDN posts also typically get the most hits.

I think LDN is one of those tricky treatment options where you don’t know exactly how much it is helping until you aren’t taking it. It is also tricky in regards to managing the side effect related insomnia that comes with it.
Well, it took me the better part of two years or so, but I was able to get around the sleep issue just by titrating my dose up slowly over the course of about eight months.
Then I came off it.
And it’s been hell.
Friggin’ nightmare actually.
Long story short, I had to stop taking it because I need gallbladder surgery. Because I started a new job the exact same week I was told this, I am putting the surgery off. They wanted me to have it in early September and it’s scheduled for Thanksgiving week. You have to be off LDN for 1-2 weeks before surgery and/or taking narcotic pain medications. My surgeon was concerned that if I urgently needed to get my gallbladder out sooner than November, he wouldn’t be able to do the surgery if I was on LDN. 
So I have been off it for about six weeks now and all I can say is…
I miss it.
Like, really bad.
I thought because I was still having pain while on it, it wasn’t working well. Not true because now, my pain levels are on a much worse level, like pre-diagnosis level. There are several other factors affecting my pain levels, but stopping the LDN was a huge contributing factor. I am trying some other pain control alternatives to get me through.
If you don’t know about LDN or are skeptical, please check it out. There are a ton of resources online. I have written several other blog entries about it and you can access those by going to the right side column of my blog and clicking the label for LDN or low-dose naltrexone. It is not a miracle cure for Sjögren’s, but it is definitely a vital component to my treatment plan.

And relatively speaking, it’s cheap.
And safe (just don’t take narcotics at the same time).
And completely underutilized because well, the health care industry cannot make a fortune off of it so they blow it off as a snake oil remedy.

Go check it out.

Low Dose Naltrexone Update

I happened to notice that my posts on low dose naltrexone (LDN) get a ton of traffic, maybe even the most traffic out of any other topic. I am relatively certain that the reason for this is because more and more patients and medical providers are learning about all the potential benefits of this under recognized medication.

I have written about LDN a few times in the past and lately, I have also been getting some e-mails asking where I am at with it. So I figured an update, even a brief one, was in order.

I am currently taking 2 mg of LDN every morning. If you have followed by other LDN posts, you will know that this is my third and final attempt at making LDN work for me. I have definitely had benefits from it in the past, but the insomnia issue negated any positive effects I was getting from it in terms of fatigue and pain.

I got up to 2 mg over the past several months and I think that is a critical reason why I am doing so well with it this time around. I am taking it in the morning. There are so many different opinions amongst the “experts” as to whether morning dosing is therapeutic at all. And honestly, I don’t feel the need to get into that debate. What I do know is that it has helped my pain and fatigue and that is good enough for me. If insomnia is a big issue for you with LDN, I encourage you to try morning dosing.

That being said, my goal is to try and switch it to evening dosing to see if it makes any difference in my symptoms. Since my sleep has been great lately, I will probably do that soon. I am also planning on increasing the dosage to 3 mg at some point. I am waiting on that because I want my body to take its time adjusting to the 2 mg and I want to try switching it to the evening. I also just got more thyroid better regulated and I know that a dose change will likely mess with that. Sometimes its good to just go with the flow.

I don’t have ANY side effects at this point with this current dose. While it has improved some of my symptoms, I still have a long way to go and I will see what happens with the changes mentioned above.

If this is the first you are hearing of LDN, I encourage you to do some research and talk to your doctor. Most medical providers have not heard of it and they require some information. This medication has very low risk of side effects associated with it and I think it is worth your while to investigate it further as a possible treatment for yourself.

Low Dose Naltrexone Update

I wish I had time today to do a much longer post on this, but it is the day before Thanksgiving and this is the year I permanently take over the Thanksgiving dinner from my mother. So, my husband and I are hosting tomorrow and it will be our first holiday celebration with some members from both sides of our family here for dinner. Lots of work to do. I am fortunate that my husband is a great cook so he does the turkey, peels the potatoes, and I do the other sides…

I noticed though that my low dose naltrexone (LDN) blog entries are getting a LOT of traffic over the past month or so and it appears that people are looking for information on it, especially in regards to Sjögren’s syndrome, so here is my update:

I was on 1mg of LDN for a month. I will be honest, I have been feeling like crap…no better word to describe it. I don’t think it was related to the LDN, but related to the fact that I am no longer on prednisone or any other autoimmune meds except Plaquenil. I feel that the Plaquenil does nothing for me. I did find out that my TSH levels are the highest they have been in years, which probably also accounts for the overwhelming fatigue. I was also having more joint pain, plantar fasciitis pain, and muscle pain. However we cannot increase my thyroid medicine while I am titrating up on the LDN because as the LDN dose is increased, I will likely require less and less thyroid hormone. My endocrinologist does not want me to swing rapidly the other way.

I increased my LDN dosage about ten days ago to 2 mg and the past few days, I have felt much better. Except for the days I work at my school nurse job, I am getting through many of my days again without a nap or lying down and my energy is better. My joint, muscle, and plantar fasciitis pain has lessened and overall, I feel like I am one again headed in the right direction.

I am struggling some with my sleep, more so than on the 1mg. However it is not as severe as in the past. I wake up several times during the night, but then fall right back asleep. Overall, I feel rested. I am working on experimenting with different dosages of my sleep supplements and I am hoping to find the right combination so that I can continue to increase the LDN.

I will continue to  post updates as things change. Wishing you all a most wonderful Thanksgiving!

Revisiting Low-Dose Naltrexone (LDN)

“LDN may well be the most therapeutic breakthrough in over 50 years. It provides a new method of medical treatment by mobilizing the natural defenses of one’s own immune system.” ~ David Gluck

I have previously posted at least twice about my trials with a little-known medication called low-dose naltrexone, LDN for short. You can read those previous entries HERE and HERE.

However I have decided that it is worthy of another post, because I am about three weeks into my third trial with it and I have recently learned more about the medication.

Naltrexone is a prescription medication that has historically been used in larger doses to treat alcohol dependence and opioid addictions. Since the 1980’s, some doctors have discovered that it can be used in smaller doses, hence the name LOW-dose naltrexone, to successfully treat some chronic illnesses, specifically autoimmune diseases, cancer, HIV, fibromyalgia, etc. It accomplishes this by regulating cell growth and slowing down cell proliferation. For autoimmune diseases, this cell regulation results in the immune system being reset.

LDN, at doses of 1.5-4.5mg per day, works by blocking the opioid receptors in your body for approximately four hours. The body is tricked into thinking it is not producing endorphins, specifically those called Opioid Growth Factor (OGF). The body then compensates for this by increasing production of these opioids and their receptors, producing a rebound effect.

LDN was first introduced to me in early 2013 by my integrative medicine practitioner. It has successfully been used to treat Multiple Sclerosis and Crohn’s Disease in some individuals. My practitioner thought that it may be of use in Sjögren’s syndrome. The problem is not many people have heard of it and there haven’t been many studies done on its positive effects; although there were a few studies done with Multiple Sclerosis and Crohn’s patients which showed its benefits. LDN is a very inexpensive drug and is already available as a generic preparation, so of course research studies do not get big funding from the pharmaceutical companies and the drug remains underutilized. There are some grass roots groups that have been trying to get the word out there and that is the primary reason why I decided to do another blog entry about it.

So you are probably wondering why I am trying this medication for the third time. I have actually had some good success with it, however the side effect of insomnia has been enough of a problem that it has caused me to go off of it during one of the trials. Also, the last time I was on it, I was admitted into the hospital and put on narcotic pain medication for an issue that had nothing to do with the LDN. You CANNOT take LDN while you are taking narcotic pain medications. The only possible exception to this is Tramadol which I have been able to take, only on occasion, and I try to space it four hours apart from my LDN dose.

LDN is a compounded medication. I get mine compounded by Skip’s Pharmacy in Boca Raton, Florida and it is shipped to my house. They also do a vegetarian capsule which is dairy-free. The owner, Skip Lenz, is a pharmacist who is considered an expert on the use of LDN and he is a very valuable resource. This is not a medication that all pharmacies know how to prepare in terms of fillers, etc. so do your homework on this. And do NOT get it in a slow-release form. The total cost, with shipping, runs me somewhere between $22-$28/month. Insurance does not cover it, but that is cheaper than many of my insurance co-pays.

Ideally, you should work with your doctor in regards to using LDN. But, if you want to try LDN and cannot get a doctor to prescribe it for you, you may contact Crystal Nason by email at this address: LDNDrListRequest@aol.com. Put LDN Prescribing Doctor in the subject line and tell her where you live. She has an extensive list of doctors who prescribe LDN and I have heard she is an excellent resource for this.

I am seeing a different integrative medicine practitioner now and we talked about trying the LDN again, but this time, by starting at a much lower dose and slowly increasing it to see if I can tolerate it. The previous two times, I started at 3mg I believe. This time around, I am starting at 1 mg. I am probably going to stick with that dose for another month or so. It has affected my sleep some already, but not to the extent it did before. Oftentimes the insomnia improves over time. Typically, people say that LDN should be taking between 9pm-3am so that it works on the endorphin receptors during their peak time, which is between 2-4am. This is probably the most debated topic regarding LDN…when to take it. Other experts on the topic feel that because of the mechanism of how it works, you can take it at any time of day. Because I have already started with some insomnia (I fall asleep fine, but wake up around 1 am for a while and feel wired), I am trying it in the morning. It’s too soon to tell yet if that is helping my sleep as I have had some other issues affecting my sleep this week.

What I have noticed just from being on this small dose is that my typical low level anxiety that I get from time to time is gone and in general, I feel more on an even keel. My energy level has also improved a little during the day. In the past, when on higher doses, I have seen a dramatic improvement in my pain levels and energy. And that is exactly why I am working so hard to get LDN to work for me.

The thing about LDN is this: besides the insomnia and vivid dreams, there is minimal risk and side effects to taking it. OK, you have to deal with the narcotics issue but besides that, it is a relatively convenient medication to take. No life-altering side effects like all the immunosuppressants that get thrown at us; osteoporosis, diabetes, cataracts, cancer, the list goes on and on. If you are being treated for a thyroid disorder, you need to more closely monitor your thyroid levels because as LDN regulates your immune system, your TSH levels can fluctuate  and you may need a thyroid medication adjustment. And finally, as we know, not all medications work successfully for everybody.

Because the research is limited and its not well known as a treatment for autoimmune illness in traditional western medicine, there are a lot of unknowns about the medication at this low dose, the dose timing thing being a perfect example. So if you decide to try it, you are going to have to listen to your body, do your research, and find what dose and timing works best for your body and particular illness. Don’t give up on it. There are plenty of non-prescription sleep supplements to help with the insomnia if you should need it and I believe that LDN is well worth the effort. While I don’t think it is a miracle cure, I do think it can be an important component of the treatment plan.

Reclaiming Acupuncture

A couple of years ago, I went to see an acupuncturist for the first time to see if he could help manage some of my autoimmune symptoms. It was such a good experience for me, that I wrote blog entries about it and continued with my treatments for about a year. It could have been longer, I forget…

However, at some point, I stopped going because I felt that I had reached an end point in terms of my improvement, and because I had started seeing a massage therapist who did trigger point massage therapy. At that time in my illness, the trigger point therapy seemed to be helping more and both modalities of treatment were out-of-pocket and not covered by insurance. I find this fact extremely disturbing in itself because out of ever single thing I have ever tried to manage my autoimmune symptoms, acupuncture and massage therapy were two of the most effective treatments.

Then eventually, I ventured into the land of integrative medicine and while some of it is covered by my health insurance, a lot of it isn’t and that adds up after a while. So I put acupuncture on the back burner for a period of about two years, give or take.

Recently, I weaned off prednisone and started to have some nasty symptoms: fatigue like I have not experienced in well over a year, joint pain, constant menstruation (yes, that was fun), mood swings to go along with the messed up menstrual cycle, and overall just feeling like hell. It took all my energy to shower, get my daily basic tasks accomplished, and to get through the day without crying. And I mean a LOT of crying; for no reason. It felt like I was premenstrual ALL THE TIME! The days where I had to work, I would rest for a few days before and after each day I worked and I did nothing but get to work and my medical appointments.

I first thought this was all autoimmune related, but the menstrual abnormalities and mood swings made me think otherwise…like peri-menopausal otherwise. I also thought maybe it was from coming off the prednisone. I didn’t think I was under a lot of stress, because I was very happy with my life, but when I objectively looked at what was going on in my life: publication of my first book, the new job, the upheaval in my church life, some personal issues, an upcoming trip, training for a recent road race, I did have a lot of stressors in my life. Most of them were GOOD stressors, but stressors all the same.

I didn’t even know what to do about all this as I didn’t know the exact cause. I was certain that the autoimmune stuff played a role, but I didn’t think it was the sole culprit. I happened to have a scheduled appointment with my integrative medicine practitioner and I talked to her about it. Part of the problem was that I had stopped my low-dose naltrexone (LDN) because it was keeping me awake at night, which was making things worse. For the autoimmune symptoms we decided to go back on the LDN, but take it in the morning, and add back my boswellia supplement for the autoimmune symptoms as well.

She then told me she suspected I may have adrenal gland exhaustion (also called adrenal gland fatigue) from a combination of the prednisone and stress. It seemed to make sense to me. She prescribed a few specific supplements (Adreset and Adrenal) for adrenal gland support and also something to help regulate my adrenals, and subsequent cortisol levels, for sleep. I came home and researched adrenal fatigue and it was like seeing the past few weeks right in front of my eyes!

I was getting nervous because I was due to fly to Chicago for the SSF National Patient Conference in a week. Our plan was to give this treatment plan two weeks and if I was not getting better, or worse, I would have to go back on a small dose of prednisone for a while. Well, two weeks wasn’t going to help me for the trip if I didn’t get better. Then, it hit me on the drive home: why wasn’t I back at acupuncture?

So I contacted my friends at The People’s Acupuncture Clinic in Amherst, MA, which is where I used to go, and made three appointments  for the next week until I left for Chicago.

Best decision ever.

I went to my first appointment a wreck. I was so exhausted and in so much pain, I just wanted to crawl into bed and sleep for six months. Within a few minutes of the practitioner inserting the acupuncture needles, I began to feel a sense of calm and relaxation flowing through my body.

That morning, I could not even open my right hand all the way because of the joint pain and swelling. Four hours after my treatment, my hand was fine and I had NO JOINT PAIN.

None.
Swear on a stack of bibles.

By that evening, I was still very tired, but actually managed to go out for a bite to eat with some friends after church.

By the next morning, I had finally stopped menstruating and didn’t feel as moody.

Twenty-four hours later, I went for a run with my husband. It wasn’t easy, but it was doable.

It has now been six days since I started my adrenal gland and autoimmune supplements and today, I had my second acupuncture treatment since starting three days ago. And, I am better. The mood swings are completely gone, my joint pain is significantly improved, I am sleeping better, my anxiety level is down, and overall, it feels like my body is moving its way back to a more even keel. I am certain the improvement  is due to the acupuncture and the integrative medicine treatment plan. I have also worked on other ways to treat the adrenal fatigue such as getting a lot of rest, no matter what is going on, and overall, just taking better care of myself.

I definitely am not in as good a place as I would like to be in, or was in, before this all blew up on me, but I am well enough to know that in 2 1/2 days, I will be able to make that flight to Chicago. The first thing I will do the day after I get back?

Go to my acupuncture appointment….

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