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"I Am So Grateful": LDN Helped Kayleen's Rheumatoid Arthritis

Kayleen Jones
March 23, 2017

Rhematoid Arthritis:

Rheumatoid arthritis, or RA, is an autoimmune inflammatory disease. The immune system attacks healthy cells in the body in error, causing painful swelling in various parts of the body. According to the Centers for Disease Control, RA mainly attacks the joints, usually many simultaneously. The most commonly affected joints are the hands, wrists, and knees. The joint lining becomes inflamed, causing damage to the surrounding tissue. This tissue damage can cause long-lasting or chronic pain, unsteadiness, and deformities. RA can also affect other tissues throughout the body and cause problems in organs such as the lungs, heart, and eyes. Signs and symptoms of RA include: pain, aching, stiffness, tenderness and swelling in more than one joint, usually involving both sides of the body, weight loss, fever, fatigue, and weakness.

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What symptoms were you originally experiencing which led you to seek medical help?

If you’ve ever slept wrong on your shoulder, in such a way that you feel a dull, deep, achy pain and you can’t lift your shoulder to wash or brush your hair, that gives you bit of an idea what I was feeling in various joints. It can quickly change from one body part to another and it can immobilize you. My affected areas were mostly in my fingers, wrists, toes, feet, one knee, and my neck.

Our 6 year old son would have to help me do very basic tasks.

The symptoms caused a lot of inconvenience. One time my wrist got really swollen, hot to the touch, stiff and unable to move. The next morning, the same thing happened to my other wrist: I was 31 years old and had to have my father (who was visiting) cut my waffles for me. Since my husband had to leave for work at 5:45am, our 6 year old son (at the time) would have to help me do very basic tasks. I couldn’t open things like jars or car doors, and couldn’t cut or chop things, due to the pain and inflammation. So trying to get his breakfast and lunch prepared, or trying to shift the gears while driving, was extremely painful.

My flares (exacerbations in symptoms) were terrible when they would come. I would get fevers which were excruciating, and severe fatigue. All this made life very difficult. I was wondering what was happening to me.

How would you describe the fatigue you experienced?

I could fall asleep at 8pm and sleep until 11am the next morning without any problem. I had no energy whatsoever. The fatigue was even worse than the kind of sleep disruption and deprivation one goes through caring for a newborn (as a mother I can say that). I’m not the kind of person that went out very much, but the fatigue feels like you went out and heavily drank, were only able to get 3 hours sleep, and had a bad hangover. And then you did that 5 days in a row. That’s an analogy of how the fatigue felt. Second to the pain and inflammation, the fatigue is one of the worst things I experienced. I just couldn’t do anything, and it made me feel really bad about myself.

What were the most difficult aspects of your health challenges?

I used to be a fully functional wife to my husband and caregiver to my son. I worked full time and could take care of household chores. Then everything just slowly fell apart. I felt like an inconvenience and a burden on my husband, in addition to a financial burden. With the chronic fatigue, I felt brain fog and lost desire to do things. You can easily fall into a depression because you can’t do so many things, or lose your desire to. Such a disease process can steal your identity. Also, before having the diagnosis, I wondered if I was a hypochondriac. I wondered if I’d somehow created some of this. Once I got the diagnosis, it was bittersweet: as crummy of a diagnosis it is, it gave an explanation of what was going on.

You can easily fall into a depression because you can’t do so many things, or lose your desire to. Such a disease process can steal your identity.
How did you finally receive a diagnosis?

After almost three and a half years of going from doctor to doctor trying to get help, doing test after test, I finally got to the right person. Two weeks before Thanksgiving 2015, my new primary care physician (who was also a functional medicine doctor) said that although she could not give me a definitive answer, she was convinced that I had Rheumatoid Arthritis (RA). She gave me a referral to a rheumatologist. Before she sent me to the specialist, she mentioned to me, surprisingly, that I should consider starting low dose naltrexone as soon as possible.

Why were you surprised at your doctor’s suggestion of LDN?

I had heard from a friend a number of years ago that she had success taking LDN for RA, and I knew that it was not yet considered a conventional medication prescribed for RA. But of that, I recognized it when my primary doctor mentioned it and I was pleasantly surprised that she both knew about it, and recommended it. Knowing that she supported LDN as a treatment option also helped me prepare for my rheumatologist visit, since he would be helping to guide the direction of my treatment.

How did your rheumatologist approach your diagnosis and treatment?

The rheumatologist confirmed the diagnosis of RA and only mentioned the medications typically prescribed for RA, including methotrexate and biologic medications. I told him that I had heard about low dose naltrexone, had a friend who had found success with it, and that I was looking into starting it. He was hesitant. He didn’t say no, but he was reluctant. After that appointment, I went back to my functional medicine/primary care doctor again, and she wrote me a prescription for LDN. When I went back to see the rheumatologist a couple of weeks later for a follow-up visit, I told him I had a prescription for LDN from her.

How did you convince your rheumatologist to treat your RA with LDN?

I had a clear vision of what I wanted and went into my visits well-informed. I stood my ground. It probably took 2 visits before he agreed to prescribe it. I told him that I was willing to take the “risk” of trying LDN first, and I just needed a chance to do so, so that I wouldn’t wonder “what if.” I told him I really felt drawn to this treatment option, and I needed to give it a shot.

He asked if I was specifically trying LDN for pain management. I told him that LDN addresses much more than pain- that it regulates the immune system at a more fundamental level. But he didn’t seem to want to know too much about it.

I ended up telling him I would take the literature about one of the other drugs he had mentioned and would research it as well, but in the meantime I was focused on trying the LDN. Perhaps my willingness to consider one of his medication suggestions played a role in shifting his attitude. Also, having my primary physician originally prescribe the LDN may have, in his mind, mitigated his risk of prescribing it. He said starting something is better than nothing, and eventually agreed.

What was your experience of trying LDN for the first time?

I had a bit of a false start. I went to a local compounding pharmacy and had capsules of 3 mg LDN made for me. I took it the first night, and the next morning I woke up feeling very lightheaded and dizzy. I took it for 5-6 days more, and when I developed a rash, my primary care doctor thought perhaps I was having a reaction to a filler in the capsule. I discontinued those capsules, and my doctor suggested that we obtain LDN from a different pharmacy. She wrote a prescription for 3 mg tablets, which I received and cut in half. I took 1.5 mg of LDN at 7:15pm in the evening (I was paranoid about sleep disturbances) and went to sleep around midnight. That first night of restarting LDN, I experienced a HUGE improvement in my sleep. I slept heavily and soundly, and didn’t wake during the night. I awoke early the next morning around 6:30 or 7am feeling very refreshed. I even cleaned my house that next day with the extra energy. I felt better than I had in many years. It was a noticeable, immediate transformation of my sleep and my mood. I felt so much better that I went back to jogging (although I was eventually discouraged from doing that, due to risk of joint damage).

That first night of restarting LDN, I experienced a HUGE improvement in my sleep.
Did you stay at a dose of 1.5 mg of LDN daily?

I continued to take 1.5 mg of LDN for about 5 months. I would take it between the hours of 8:30pm and 10:30pm each night to avoid sleep disturbances. Whenever I would try to increase the dosage too much, I would experience side effects like shakiness and rapid heartbeat. I was able to increase my LDN up to 2.25 mg, the dose I stayed on for 4 months, and that worked well for me (good sleep, mood, energy). Then I increased to 3.0 mg, which is what I’ve been on for two and a half months.

What have been the best improvements you’ve seen since starting LDN?

After starting LDN initially, I felt an immediate improvement in my energy, sleep, mood, and mental clarity. It took about 6-7 months (at 2.25 mg for a month or two) that I could finally feel a real difference in my inflammation and pain as well. Aside from the decrease in inflammation, the definitive proof about LDN’s benefits was the improvement in my mood and fatigue. I feel an 80-85% increase in my overall energy level and mental clarity since starting LDN. I am so grateful. My flares have also decreased in frequency since starting LDN: I have not had a flare since September 2016. LDN has been great for me.

I feel an 80-85% increase in my overall energy level and mental clarity since starting LDN.
Are you utilizing other treatments in addition to LDN?

In addition to the LDN, I am on an autoimmune protocol diet (which avoid inflammatory foods such as gluten, dairy, soy, nightshades, and sugar), I take supplements (such as 2500 mg of fish oil, liquid Vitamin D3) and I take a high dose of probiotics (60+billion live organisms a day). After I started the probiotics, my morning stiffness would be gone in 15-60 minutes, whereas I normally felt it all day.

Given all you are using to treat yourself, how do you know the LDN is effective?

I’ve heard it said that if you really want to know how well something’s working for you, go without it. That’s what happened over Christmas break in 2016. I experienced a delay in getting my LDN prescription refilled, and I was without LDN for about 5 days. The fatigue returned and was awful. I remember thinking to myself, “This is what I used to feel like during those very difficult years before the diagnosis.” I could then tell that the LDN alone was really providing a lot of benefit to my fatigue, sleep, and mood.

What else would you like patients with RA to know?

I would like people to know that the side effects of LDN, for me and many people I’ve come across, are so minimal, and that if it works for you, the benefits can be life changing. With LDN, there is an opportunity to feel better. I would encourage you to seek every avenue to find a willing provider (even if you have to travel it might be worth it) and to be persistent - putting the LDN “bug” in your rheumatologist’s, or primary care physician’s, ear. I would also like to tell people to have patience with the LDN. Go slow and stay low if you need to. That worked well for me, and it has been amazing. I tell anyone and everyone I can about LDN. I am so very grateful.

More About Kayleen:

I live an adventurous life here in Idaho with my loving and supportive husband of 10 years. Together he and I have a very eccentric son who is teaching us what it is truly all about. I feel so blessed to have had the opportunity to try LDN. An acquaintance of mine started an LDN Facebook group named “Low Dose Naltrexone and Rheumatoid Arthritis”; I am a co-administrator of that group because I truly believe that one bit of information you give to someone, even just some “food for thought”, might educate them and give them hope. Since I’m an administrator on that FB page, if you have a question I might be able to help you with, please feel free to join our group and send a message.