Sherry - 1st Jan 2020 (LDN, low dose naltrexone)

Sherry - 1st Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today. I'm joined by Sherry who uses LDN. Thank you for joining me today, Sherry. 

Sherry [00:01:07] Thank you for inviting me. 

Linda Elsegood: [00:01:10] Could you tell our listeners what is it you take LDN for?

Sherry [00:01:16] I have the autoimmune disease, lupus. I have degenerative arthritis and fibromyalgia. These are three of the main concerns in my health, which has caused chronic pain. And it's really brought me to a place of disability, not being able to work and to enjoy life. And my health just kept deteriorating. And so a few months ago I was introduced to the alternative medication of low dose naltrexone. 

Linda Elsegood: [00:02:08] Can we just stop there for a minute? Let's find out first of all, before you found LDN, what was it like, and how long did you have all these conditions? I mean, have you had them all your life? Have they only been the last few years? Start at the beginning of your journey. 

Sherry [00:02:28] probably about 25-30 years ago I started having issues of where I would get a rash all over my body and then begin just feeling really bad and tired, and everything on my body hurt. It would happen maybe two or three times a year, or if I had gotten a virus or a urinary tract infection, I would get these symptoms. And it took several years for it to progress to where I was having these symptoms every month, every two weeks. And it took quite a while for doctors to diagnose the condition as lupus. And it is a progressive type of illness, not like it happens once and then you get better.

It just continued to get worse as I aged, and I developed more degenerative arthritis in my spine and my hands, which also inhibited me from being able to do a lot of physical activity. I was a nurse and you use your hands quite a bit. And that became very difficult to do. And then I started with the chronic muscle pain and fatigue of fibromyalgia that impacted more of my lifestyle. As time went on, I ended up taking early retirement from a job so that I could rest for a little while, and maybe reduce the stress level in my life to see if that would help. I found a job that I could do sitting down and using my computer, but still having to deal with the symptoms of chronic pain, fatigue and then flare-ups from any types of stress or viral illnesses or bacterial illnesses. So it really inhibited my life quite a bit. In 2018, I was awarded a disability determination, and that same year I couldn't do my job anymore even though it was a sit-down job. I just got to where I couldn't do full-time work. It just affected every part of my life, even my extracurricular activities within the community or with church or friends. 

I went to see a rheumatologist, and a couple of years ago and a new drug called Benlysta came out that was the first, uh, treatment for lupus; and I've been getting infusions every month and that has helped tremendously. It's cut back on the number of flare-ups I have with lupus. But degenerative arthritis and the fibromyalgia still had a great impact. And it was to the point where I could not even walk a mile. Or if I had to go to the grocery store and I had to walk around the big shopping centre, I'd make sure to hold onto the cart if I had pain in my back and my legs, and it would just make me have to sit down or, at times lie down. If I had family meals, a holiday celebration where I would do a lot of food preparation, after a short period of time, I just had to go lay down. The pain was just so tremendous in my body because of arthritis.  

Linda Elsegood: [00:07:53] can I just ask you, Sherry, how difficult was it to be diagnosed with fibromyalgia because it hasn't been recognized as a condition for that many years?

Sherry [00:08:03] That's very true. It is difficult, because as far as being recognized, and even lupus, it is the great disguise there. It was hard for them to finally put a diagnosis on me. And you find in your mind that you question whether you are going crazy or something, and what's going on with me? I know I have these feelings. So you finally find other people who are experiencing the same thing you are, and you realize you aren’t the only one that felt that way. And so yeah, it is a very difficult thing going through a disease process that is not truly recognized. 

Linda Elsegood: [00:09:28] And then you, of course, we're told about LDN. I mean, how easy was that to get a prescription and have it filled.

Sherry[00:09:38] That was another story. I had been referred to pain management because the doctor said, well, there's nothing else we can do for you. Go to pain management. And that was getting injections and getting on opioids. For some reason, it did not work on me. I guess maybe I'm just different. But the steroid injections didn't work. And as part of pain management, you also are sent to a psychiatrist to be able to find better ways to deal with chronic pain. And it was through that - that psychiatrist had dealt with other patients whose opioids and injections and all did nothing for the pain. And she said, they were put on a drug, it's off label use, but maybe this will help you. And so I started to do some research on it and talked with my pain management doctor asking if she knew about this use of naltrexone. She had never heard of it before. Then I talked with my rheumatologist and he said he had heard of it, but he's never used it for any of his patients, but he was willing to try it on me. And luckily there was the LDN Research Trust website and all the information that's for providers and patients.  He was able to be directed to that, and as he's educating himself with the use of this drug, he sent my first prescription to my pharmacy. I had no idea that it had become compounded, and my pharmacy didn't know either. So they actually made a mistake and gave me 50 milligrams of naltrexone. I'm thinking it was because I was on opioids at one point. So that was a farce. And then I finally found a pharmacy that did compounding for naltrexone, and that pharmacist was extremely helpful. He directed me to some more LDN research, information so I could educate myself and become part of the lupus support group of those who use LDN. He was an immense source of education and comfort, so I finally was able to get the medication through a compounding pharmacy in our area. 

I even talked with my primary care physician, telling her about the experience that I've been having with low dose naltrexone, and she says, this is what we need to hear. We need to hear about treatments like this, and they're not hearing it. And so anyway, my little part, I'm sharing the website information.

Linda Elsegood: [00:13:30] at what dose did you start on when you started, Sherry

Sherry [00:13:34] He started me on 4.5 milligrams right away, so I was taking that at bedtime, and immediately for the first couple of weeks, I saw no difference in the pain. I did start sleeping and dreaming, and I hadn't dreamt in quite a while, and sleeping through the night was very restorative.

It was about maybe six weeks of taking the 4.5 milligrams at bedtime that I started noticing in the day time that my pain level was decreasing. It wasn't as bad. It was tolerable. I had been where I would be from a six to eight pain score level every day, and at times more when I had to overdo things too much on my feet, or too much physical activity. I just had to go to bed and there was nothing that really helped me to take the edge off. After about six weeks, I noticed it's starting to work for pain and I was just full of joy about it. I just felt new. I felt renewed. My pain level about six weeks into LDN has gone to a three to a five every day, and that's for me, that's tolerable. That works. And I'm just overjoyed with that. And because of that, I've been able to walk for more than two miles, and hold on to a thing, or lie down, or use some other pain medication to help take the edge off. Those were the first experiences. I was just really just thrilled and told my doctors about it and they were extremely happy about it. Yeah. It set a whole new outlook on life. I don't expect that I would be 100%  a new body, a new person, but my life is definitely tolerable now in my body. 

Linda Elsegood: [00:16:49] And do you have a virus? Would you like to explain what happened when you had a virus? 

Sherry [00:16:57] Yes. It's now six days ago, I started having a respiratory virus, the cough, the congestion and all that. Usually, with lupus, those are triggers to a lupus flare-up. I didn't really know what was going to happen, but when it triggers a lupus flare-up, I get a rash over my total body and my skin becomes very painful. I have increased muscle and joint pain, fatigue, headache. It's not very nice.  It's bad enough you're not feeling well because you have a virus, then you have that on top of it. So six days ago I started with this virus then two days later I woke up and I had a lupus rash all over my body, the same type of experience that I would have prior, with the pain and fatigue, and all that went along with it. I called my rheumatologists and I reported to him what it was. Usually, he would prescribe a taper of prednisone over one to two weeks and my symptoms would be gone, the rash would be gone. And when the rash leaves, 10 days later my skin starts to peel off. The prednisone helps with the pain and the fatigue, but it usually takes about one to two weeks for me to get through an episode of a flare. 

I called my doctor as I was beginning this flare up and he didn't want to start any prednisone. He wanted to be sure that I did not have any type of infection, and afraid of it suppressing my immune system and then the virus really taking over. I agreed and I said I will call back and be reevaluated, so no prednisone next time. And then the rash and the fatigue and the pain exacerbated. And by that evening, ready to go to bed, I took in my LDN, as a backup.  We decided to give me the doses of one-milligram capsules so I could play with the dose and see if I could have a good reaction on just three milligrams of naltrexone, or if I really needed five or six milligrams of Naltrexone tab That's when I found that when I was on the three milligrams I had more disruption in sleep and more discomfort in my muscles and joints. So I went up to five milligrams and I was taking that pretty regularly and I was feeling good. And then I got the virus when I was on five milligrams of LDN. So when the flare started, that night when I went to bed, I took five milligrams of LDN. And when I woke up the next morning, my rash was almost gone. I mean, I could barely, barely notice it. I mean, it was just a shadow of it. And as the day went on the pain and the rest of the rash were totally cleared up. All the symptoms were diminishing. I still had the cold symptoms, cough and stuffy nose and all that, but the lupus flare was fading without prednisone. And that just is another surprise, to be able to do that without having prednisone. It’s just a miracle that that could happen. And every night I still continue with the five milligrams of naltrexone.

And every day, the lupus symptoms, the flare-ups, have diminished. I'm still working through the virus. You could probably tell, I sound probable still a little congested, but to me, it's a miracle. I  called and reported to my doctor and said, I know it's hard to believe, now I don't have the symptoms anymore and I didn't take any kind of prednisone. So that's where I am today. 

Linda Elsegood: [00:23:47] Well, What, amazing story. Truly truly is, and I'm sure those people listening who have lupus or degenerative arthritis, fibromyalgia is going to be so inspired by you, and thank you so much for sharing your story. Sherry. 

Sherry [00:24:08] Oh, I appreciate you giving me the opportunity. I hope this can help someone. I know it's so discouraging for some of these diseases, not getting the help you need.

Linda Elsegood: [00:24:21] Well, thank you for having been our guest today. 

Sherry [00:24:25] Okay. Thank you very much. 

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