What is Low Dose Naltrexone / LDN and Why Use it for Autoimmune Disease?
Multiplying the cells in your body are controlled internally by naturally occurring endorphin called Opioid Growth Factor (OGF) and not the same external opioids like Morphine. OGF binds with OGFR (OGF receptor which is in every cell) and when it does not, your immune system does not properly function. Low Dose Naltrexone (LDN) regulates this by blocking the OGFR for a short period of time throughout the night and your body produces more OGF, OGFR, and increases the sensitivity of the two coming together. By regulating the immune system, this process can dramatically reduce pain and inflammation, especially those with an autoimmune disorder. The video below explains the process in more detail:
Low Dose Naltrexone (LDN) Reviews and Scientific Testing
NOTE: I have Crohn’s Disease, so these test results are the closest to my autoimmune disorders. However, it regulates many other autoimmune and other disorders.
- According to the Low Dose Naltrexone Organization web site:
“As of September 2002, Dr. Bihari was following eight patients with Crohn’s Disease on LDN. In all eight cases, within 14-21 days the signs and symptoms of disease activity stopped. All eight had remained stable since anywhere from 2 months to 36 months.”
- PubMed Article: Low-dose naltrexone therapy improves active Crohn’s disease
“Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients.”
Low Dose Naltrexone (LDN) Requirements
- Prescription from doctor. My Rheumatologist Dr. Goodwin prescribes this but I am his first patient to prescribe with my Crohn’s Disease.
- Optimal dosage is 4.5mg.
- Cost is $38 / mo or lower if buying in bulk.
- Take between 9pm – 3am. I can confirm you do not need to take it at exactly 9pm like my doctor prescribed.
- Avoid slow-release (SR) or timed-release naltrexone. You want to be sure the LDN you receive is in unaltered form that allows you to receive the full dose quickly. Slow-release formulas may not give you the full therapeutic effects.
- Be aware of inactive fillers. Part of the LDN capsule will contain a “neutral” filler material, however there is some evidence to suggest that calcium carbonate as a filler could interfere with the absorption of LDN. So to be on the safe side, avoid LDN capsules that contain calcium carbonate fillers. Recommended either Avicel, lactose (if lactose intolerance is not a problem), acidophilus / probiotic, or sucrose fillers as useful fast-release fillers.
My Personal Low Dose Naltrexone (LDN) Diary and Review
REVIEW: In almost two years of being off Enbrel, I was not seeing the results I wanted. In fact, the last couple of months have been much worse and barely tolerable. A few weeks ago, I made the decision and was at peace to start going back on Enbrel but wanted to try LDN as a “last hurrah” since it has helped out others with autoimmune, the side effects were much less than Enbrel, relatives I know have taken similar medication with success, and it’s one of the very few prescriptions the holistic community approves.
As I write this ongoing story, I can tell you I have made some major gains in reduced inflammation and pain. The first 3 days were terrible, but things did get better about a week after I started. In the two weeks I’ve taken LDN, my friends have noticed I am better plus I am able to be more active. While it hasn’t solved my underweight issue, I am hoping my body will get used to the medication more and I can start to finally absorb foods better. Something tells me, though, that will be another hurdle answered in another post.
UPDATE 10/23: After taking LDN for over 1 1/2 months I’ve concluded that it really does help bring down my symptoms of inflammation and could be helping my system regulate itself. However, the process is too slow now and I am just too busy to get another Iritis attack, shooting pain problems, and the myriad of other issues I am dealing with. My hope is to have Humira take care of the bulk of my symptomatic problems while helping to fix my Crohn’s disease. The LDN then helps regulate my body and, along with a healthy diet, will fix my root issues. I also plan on continuing with my autoimmune doctor to find other root causes for my high levels of inflammation.
9/4 – Bed at 10:15pm, woke up at 6:30am, napped from 9-10am and 1-2:30pm. Woke up many times throughout the night (every 1/2 hr, 3/4 hr, 1 hr, 2 hrs mix). Woke up with sore hips, legs, sternum, and shoulder blades. I would have a rapid amount of dreams and thoughts throughout the night. Since the Rheumatologist and disagreed on things and I spoke with my parents that evening, the dreams were a mix of the two. Was able to cook dinner for friends in the evening along with fish & play chess after 8pm. Losing weight and at my lowest of 117lbs.
9/5 – Bed at 10, up at 2am, then 7:30am. Napped from 9-11:30am and 3:15-4:30pm. And like yesterday, having many dreams and thoughts throughout the night along with my body jerking (and waking me up sometimes with shooting pains) whenever I had a dream involved with an quick action. Had to take 3 bathroom breaks than my normal 1-2. Woke up with sore spine, neck, shoulders, hips, and tired. I slept 13 1/4 hours today.
9/6 – Bed at 10:15pm, up at 4:30am. Stayed up until 6am and napped until 7:45am. Afternoon nap from 1:15pm to 3:15pm. Woke up stiff all over at 4:30am. This was by far the worst sleep I’ve had in months. Every 20-30 minutes I woke up with a shooting pain like someone was using an electric prod or taser on stun mode. When I woke up at 7:45am, my right hip and neck were the biggest issues. Did light swimming for 10 minutes at 11am. During the afternoon nap, my mid section locked and back right / left ribs would send shooting pains if I moved. Getting out of bed was not easy but was able to roll out of bed. Today was my last day using GI-Synergy supplement. Had some soup at 4:30am & contributed to 2.5lbs weight gain in the morning.
9/7 – Bed at 9:30, up at 6:30 waking up intermittently but going right back to bed. Napped from 9:30am – 10:30am & 1-2:30pm. Still up throughout the night but was half as bad as yesterday. I also did not need to leave the bed to go to the restroom and will continue this trend with the mason jars (I think I do worse if I try to get up in the middle of the night). As usuals woke up with neck, shoulder, legs / hip pain but not as bad as yesterday and I am finally starting to see some improvement! Throughout the day got weaker and my ribs / sides in the back area were sore and if twisted the wrong way would send shooting pains. Sitting back in any chairs did not work. Also hard to get out of bed in the afternoon because of those shooting pains (took me 20-30 minutes). I was able to take a short walk at 6:30pm.
9/8 – Bed at 10pm, up at 5:30am waking up intermittently. Napped from 7:30am – 9:15am and 2:15 – 4:30pm. Prior to morning nap I was weak with back rib area, neck, knees, legs, shoulders & hips hurting. After on/off morning sleep, I felt better in most of these areas. I was able to travel to two stores with help from my neighbor and getting in/out of the car was easier than last time. Developed a headache after the afternoon nap all day and is dull in the late evening. I am up to 121lbs. now.
9/9 – Bed at 10pm, up at 6am waking up intermittently. Napped from 7:45 – 8:30am & 2-3:45pm. Main pains of the day were the left leg / hip areas & knees. I also became weak during my afternoon nap (I had the ceviche but am finding my body isn’t good enough to handle on it’s own) & in the evening. Had a steak for dinner & felt better in the late evening.
9/10 – Bed at 10:45pm, up at 6:30am waking up intermittently. Napped from 12pm – 2:30pm. Left leg and shoulders again, but went to the pool for 10 minutes at 9:30am and did a short walk at 7pm. I haven’t done both on the same day in months. As the evening progressed, my right foot got puffy / inflamed again but went away after I woke up the next day. Weight still decreasing and at 118lbs now.
9/11 – Bed at 10:30pm, up at 3:45am – 4:15am and 8am. I was too uncomfortable to stay in bed and had to get up. Better range of motion in the morning for my shoulders & some in the neck. Pain still in left leg & hips, but better. I’m at 118 1/2lbs today. Took a walk at 7pm.
9/12 – Slept at 11:45pm (was in the bed by 10pm), up at 6am, napped from 8-10am and 1:15 – 2:45pm. Usual hips and legs sore. Right shoulder blade was predominantly sore throughout day along with left front rib in afternoon / evening. I was able to pick up dishes in the morning without needing to lean with one arm.
9/13 – Bed at 10:30pm, up from 4:30am – 5am and then woke up 8:15am and napped from 3pm – 4:30pm. General spinal / back stiffness along with left hip & leg. Was able to finally do a half-moon pose in Yoga and was at the pool for 15 minutes at 10:15am. Whole body was sore from afternoon to evening but went mostly away by next morning. Developing diarrhea and lots of gas the last few days and have a feeling it’s due to my intestinal system rejecting the low-dose Naltrexone (but still works as it should with my mind / opioid receptors). Still averaging 118 lbs.
9/14 – Bed at 10:30pm, up at 5:45. Napped from 8 – 9:30am and 2:15 – 4:15pm. Still have the diarrhea / gas in the morning but much less as the afternoon progresses. General stiffness all over along with hips / legs. Travelled to three separate places today and did lots of walking along with carrying 8 jugs of spring water. Needed afternoon nap, but was not exhausted.
9/15 – Bed at 11:15, up at 6:15am. Napped from 8-9am & 3-4:45pm. Pain mainly in the shoulder blades and getting shooting pains in my left leg. This was mainly due to riding in my parent’s car which is a little stiffer plus going out to eat (again, stiff seats). As a sidenote, it was great seeing my parents since they left last May.
9/16 – Bed at 10:30, up at 4:30am, then 7:15am. Napped from 9:30am – 12pm. Woke up with neck, shoulder, sternum & low-back pain in the morning. Overall just too tired to do much in the morning, tried sleeping on my side and didn’t get enough quality sleep. Throughout the morning nap, I switched back to my back automatically and got the rest of the sleep I needed.
9/17 – Bed at 10:30pm, up at 4:15-4:30am and then 7:15am. Napped from 9:30am – 10:45am, 2:15 – 3:45pm. Overall moving better all over. Some stiffness in the neck and shoulder blades / shoulders. Late morning was my best time and was walking almost normal. Went to pool at 11am for 20 minutes and did a small walk before I went to bed (around 9:30pm).
9/18 – Bed at 11:15pm and up at 6am. Napped from 8-9am and 2-3:15pm. Throughout night I usually wake up around 12:15am, but this time it was 2:15am. Woke up with right leg limping again along with stiffness in right shoulder blade, neck, and low-back. Right leg progressively worse as the day and evening progressed.
9/19 – Bed at 10:30pm, up at 6:45am. Napped from 8:30am – 10:30am and 1:15pm – 3pm. Pain mainly in the legs, shoulders and neck. After breakfast, had a big bowel movement and was unexpected. Throughout day the pain & limping would jump from the right leg to the left leg (after afternoon nap) and right shoulder blade acting up in the late afternoon. Took a short walk at 5pm.
9/20 – Bed at 11:45pm, up at 5am and slept from 6-7:45am. Took an afternoon nap from 1-2:45pm. Pain with neck / shoulders, shoulder blades and legs. Was able to go to drive and go to dinner and (on a spur of the moment) saw the sunset for the first time in months. This is also the start of the first fun weekend I could get out in months.
9/21 – Bed at 10:45pm, up at 6:30am. Napped from 8:30 – 9:45am and 2-3:15pm. Morning pain was neck, legs and shoulders as usual and the neck stiffened up throughout day. Since my good bacteria levels are good, I am now at a point in my level of inflammation where I can test to see if fermentation may be a root cause due to the fungal levels I received from my gut ecology test. As of today, I have stopped drinking water kefir as it is one of the only (and main) fermented foods / drinks I have (and have on a daily basis). If I get better this week and next, I’ll know fermentation is an issue with my fungal gut ecology. For activities, I went to Whole Foods twice, Target, and then AZN Cuisine for dinner. Took a 1/2 hr – 45 min walk after dinner around 7:15pm (longest I can remember in awhile). I still find it difficult to sit in restaurant booths and chairs.
9/22 – Bed at 10:30pm, up at 5:30am and napped from 7:30am – 9:15am + 3-4:15pm. Shoulder blades more prominent for pain, but also neck and legs as usual. My dreams the past week have been 80% about people I don’t know and they come in and out rapidly (not as bad as week 1 though). These thoughts / dreams / visions can also start within 30 seconds of closing my eyes and make little sense. I wake up many times saying “What’s wrong with you?” as if my dreams are the 3rd person. Went to lunch with my parents at California Pizza Kitchen and tried the Barbecue Chopped Chicken salad that was against my diet (had beans, tortilla strips, and salad is raw which is harder / more fibrous to digest). I’m happy to say NO FLARE-UPS! And no major deviations that I normally see when I digest food. This is a great step in the right direction for me.
9/23 – Bed at 11:15pm, up at 6:30am and napped from 8:30am – 9:30am and 2-3:30pm. Pain issues mainly with the shoulder blades. Cooked in the evening with friends and made a stew with lentils. While I was able to eat them and not have a flare-up, the flatulence was still there and I could tell I was starting to push things. I will wait a few days before I have the leftovers.
9/24 – Bed at 11:15pm, up at 6:30am not waking up as much in the middle of the night. Napped from 8:30am – 9:30am and 1:15 – 2:45pm. Issues still with the shoulder blades and the standard aches all over in the morning. I’m starting to get less random dreams and developing one continuous dream / story throughout the night. Went to the pool at 10:30am for 15 minutes and walking a little farther in the evening around 7pm.
9/25 – Bed at 11:15pm, up at 6:45am. Napped from 1-2:45pm. Main issues with shoulders (mostly right) and shoulderblades. Neck also stiff and my right foot gets swollen in the morning. Saw the Gastroenterologist and wants to do a colonoscopy / endoscopy like last time for confirmation of my Crohn’s / IBS / UC. Other than that I was cleared. Finally able to walk down the street & back (first time in over a month).
9/26 – Bed at 10:45am, up at 6:45am. Napped from 9 – 9:45am and 1:30 – 3pm. Main pains in right shoulder / shoulder blade. Some in the neck and hips. As the day progressed, my right foot stayed swollen. This is my first time I stayed in bed and slept a full 8 hours (needed to use the mason jar once) since taking my Low Dose Naltrexone. I’m also stopping to eat eggs for a bit as I think my stomach does not agree with me if I take them everyday. I’ve switched to rice cereal and/or quinoa cereal with almonds and raisins / craisins. If still hungry I add in a sausage. Did a short walk in the evening.
9/27 – Bed at 10:30pm, up at 1:15am then 7am. Napped from 1:30pm – 3pm. Main issue with right shoulder blade and not as much with the hips and neck. Went to the pool at 9:30am for 15 minutes. Evening was a 2 hour energy healing session. Sitting in a hard chair is really hard on my neck, shoulders and spine. The energy healer sensed it and along with my meditation helped clear it up for the evening.
9/28 – Bed at 11pm, up at 7 and napped from 8:30am – 9:15am along with 2:45pm – 4:45pm. Issues mainly with the inner shoulder blades, neck and spine (best guess due to sitting in hard chairs night before). I was able to extend further in my torso twists on with Wii Fit. Also last morning of taking the EFAC supplements. Travelled with my mother and took her out to dinner in the evening. Was in / out of car around 10 times with all the places we went (most that I can remember). Definitely tired by afternoon and sitting in the restaurant was difficult but still manageable.
9/29 – Bed at 11:15pm, up at 5:30 and back to bed at 6am. Napped from 6-8:30am and 1:45 – 3:45pm. Main issue with the shoulder blades and some with neck. Right foot continues to swell up in the latter part of the morning. Did a 30-second plank on the Wii Fit.
9/30 – Bed at 10:30pm, up at 12 and 5:45am and got up at 8am. Napped from 1 – 2:30pm and felt lethargic afterwards. Overall sore due to plank & low back. Walked at 6pm to end of street and vacuumed in the evening.
10/1 – Bed at 11:15pm, up at 6:30am. Napped from 1-2:30pm. Overall sore and stiff in morning, afternoon nap helped. Went to my tech meeting (1st time in over 2 months) at 6pm – 8pm (sitting on hard chairs still difficult) and walked it off for 30 minutes at 8pm. Went to be exhausted.
10/2 – Bed at 10:15pm, up at 6:15am. Napped from 8:30am – 9:30am and 12:30pm – 2pm. Main issue is right hip / leg & mid-back. Shoulders / neck better than a few days ago. Overall stiffness as usual but better after naps. Went to dinner and still hard to sit at a booth (or anything) at a restaurant.
10/3 – Bed at 10:45pm, up at 4 & 7am. Napped from 10 – 11:30am and 2:45 – 4pm. Right hip in the morning (twisted it weird while sleeping throughout night) but better late morning. Most of the day felt tired and sore (like you do when you’re sick). Don’t know if it was from the restaurant the day before (Barbecue Chopped Chicken salad at CPK) or because it rained all day.
10/4 – Bed at 11pm, up at 6am. Napped from 8 – 9:30am and 2-4:30pm. Stiff as usual with soreness at the tops of my shoulders, hips, and low-back. Went to the pool at 10am for 20 minutes with a harder routine: 10 minutes treading with aqua jogger, 10 minutes of stretching / yoga, squats, push-ups and bicycle motions on the stairs. Evening took a 15 minute walk.
10/5 – Bed at 11pm, up at 6:15am. Napped from 8:45 – 10am and 1:30 – 4:30pm. Predominant issues are left elbow (from sleeping incorrectly & the pool) along with general stiffness and body aches with a minor headache in the morning. I still continue to wake up a lot from 1:30am – 6:15am but go right back to bed which is due to my body still not being able to stay in the same position too long. I’m still too weak to sleep on my sides and I never feel good if I sleep more than an hour on my side (sides & arms hurt for 1/2 the day). The neck is getting better range of motion up & down, side to side is seeing small improvement. In the evening I had a 2/3 pound hamburger “salad” with a malt (which was heaven in a glass) and this gave me no adverse reactions. I will continue pushing dairy to help gain some weight. Sitting down is still very difficult at restaurants. But I went to the movies and was uncomfortable for only a bit (getting up was hard the first few steps as usual). I consider this a win because last movie I saw I was sitting up and back many times throughout the movie.
10/6 – Bed at 11pm, up at 5:15-5:30 and slept until 7:15am. Napped from 2-3:15pm. Slept straight through 11 – 4:15am without waking up. Pain and stiffness generalized throughout body but nothing too noticeable. Went to pool at 5:30pm for 20 minutes.
10/7 – Bed at 10:30pm, up at 6:30am. Napped from 8-9:30am and 1:15 – 3pm. Hips and neck hurt mainly to overdoing the pool exercises. Woke up 1:30am to use the mason jar and then slept until 5:30am. 5:30am – 6:30am woke up many times. Tried cheddar cheese and Breyer’s ice cream. Short evening walk due to pains mostly throughout the day.
10/8 – Bed at 10:30pm, up at 6am. Napped from 8:30 – 9:45am and 3:30 – 4:30pm. Still sore and stiff due to the pool and possibly the cheese / ice cream. Lower back was extra stiff and sore for some reason. Starting to take short walks in the morning and took a walk down the street in the evening. Health did improve after morning nap and in the afternoon. More than ever I’m convinced that I need more sun as I just feel better when it’s out. Saw the Rhumetologist (test results 10-3-13) and will be reporting the tests and info back soon.
10/9 – Bed at 10:30pm, up at 6:30am. Napped from 7:30am -9am and 1:30pm to 2:30pm. General motion & stiffness better. Developed Iritis which is basically inflammation of the eye. Symptoms include (and I felt) pressure, sensitivity to light, redness and soreness. Included is what it looks like:
Had my mother come down to help me out and went to an Opthamologist in the afternoon to get the generic for Pred Forte & Cyclopentol. If you are reading this somehow and develop Iritis GO TO THE OPHTHALMOLOGIST RIGHT AWAY. Delaying the eye drops will only make things worse. My Iritis was so bad I had to go to the doctor’s office blind and have her guide me to sit and move from one room to another. Even in low light it was very painful and the eye exam was not easy. Before I left, I requested & received blackout glasses and they have been very effective. Rest of the day was low-light in the house, sleeping and keeping my eyes closed as much as possible – no TV, no electronics of any kind. In the evening I walked down the block (20 min.) at 7:30pm.
10/10 – Bed at 10:30pm, up at 3:30am and then 7:15am. Slept from 10 – 11:15am and 12:45pm – 1:45pm. Iritis condition is much better but still quite sensitive to light. Saw the Opthamologist and agreed the condition is better but to stay on the drops for another week. General stiff & sore and still hard to get out of chairs. Mid-day I rested 5-6pm and walked down the block at 9pm. Drank Chardonnay the 1st time in weeks along with some ice cream – something rewarding for all the stuff I went through.
10/11 – Bed at 10:30pm, up at 6:15am. Slept from 9:30am – 10:45am and 12-2:30pm. Right eye slightly better than yesterday but still sensitive to light and developing headaches due to the medication and light. I’m able to view the computer monitor a 1/2 hour in the morning at a time and 5-10 minutes at a time in the afternoon. More sleeping and house still quite dark – Dracula would be happy here. Evening went to a Whole Foods cooking class and was able to sit in the chair semi-comfortable. Any other times in the past 4-5 months have been very uncomfortable and had to get up a few times.
10/12 – Bed at 10:45pm, up at 7am. Slept from 10 – 11:15am and 2-4pm. Stiff back, right eye sensitive to light but better than yesterday and can watch TV and travel outside the house. Can tell body fluctuating in inflammation throughout the day and it becomes more prevalent after eating (confirming yet again my digestive system is still not in good shape). Went for a walk down the block at 9:15am and at 6:30pm. Got a care package from my friend George and lifted my spirits for the weekend.
10/13 – Bed at 11:45, 5:15am – 5:30am – 8:30am. Napped from 10:15 – 11:30am & 3:30 – 5pm. General stiffness in shoulder blades, neck, and back with soreness in hips. Right eye cloudy due to meds along with some light sensitivity. Walked for 20 min. at 5:30pm. Out of B6ND supplement.
10/14 – Bed at 10:45pm, up from 5:45 – 6:15am and slept until 7:30am. Napped from 1-2:30pm. General stiffness in shoulder blades, neck, and back with soreness in hips. Right eye cloudy due to meds along with some light sensitivity. Shoulder blades got worse throughout day & need to go to pool. I went for a 20 min. walk at 6:30pm. Saw my Rheumatologist and got a prescription for Humira which is a biologic medicine similar to Enbrel but is also FDA approved for Crohn’s disease. Even though my inflammation test results are improving, I cannot keep living in this condition – needing 10+ hours of sleep a day (anemic), low weight (117 lbs. currently), weakness, and limitations of food intake along with the dangerous levels of high inflammation. My hope is to be on Humira for under a year, keep fixing my root causes, and hopefully the LDN will be good enough for me to stay on.
10/15 – Bed at 10:30 – 7am, got up at 5am. Napped from 1 – 2:15pm. Right eye is better, general stiffness in back, and went the pool for exercise at 10:30am to help out with the shoulders (1st time I could do that with light sensitivity and chlorine concerns). Went for a 25 minute walk at 6:15pm.
10/16 – Bed at 11pm, up at 12:45am, slept until 7:30am. Napped from 1 – 3:30pm. Stiff mid-lower back and right eye still blurry from meds. 9:30am walked for 20 min. Went to Whole Foods class in evening and had a stew that contained flour with the meat & dark beer within the sauce (containing wheat) which gave me a mini flare-up. Usually I would have a flare-up for days, but this only lasted for a few hours.
10/17 – Bed at 10:30pm, up at 3am, slept until 7:30am. Napped from 1:15 – 2:45pm. General stiffness and soreness throughout with right eye cloudy. Pool at 5:15pm for 10 minutes. Pool is becoming too cold to swim (teeth chatter & purple fingernails), but need it for my range of motion.
10/18 – Bed at 10:30pm, up at 2am, slept until 7:30am. Napped from 10:30 – 11:15am and 1:30 – 3pm. General stiffness and soreness. Past few day from 4:30am – 7:30am I’ve been on/off with sleep (but not enough to get out of bed). Walked at 9:30am for 20 min. To recap my conditions before going on Humira, I have / am:
- Rt eye inflamed (Iritis) and need to take drops (Pred Forte 5X/day & Cyclopentol 1/day)
- Sitting in chair too long makes my body very stiff.
- Stools loose
- Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.
- Fringe foods are more tolerated. Started eating more dairy to see if I gain weight.
- Grains / flours give me mini-flares.
- Still have not tried bread or pasta as in the past I would get the worst flares from that.
- Getting in/out of bed is still hard and painful and I need a rope to get me out of bed.
- Pains are usually due to stiffness and not shooting pains as before.
10/19 – Bed at 10:45pm, up at 6:15am, back to bed from 7:15am – 9am. Napped from 11am – 12:30pm & rested in bed for an hour in the evening. Noticeable pains / stiffness in low-back, hips, left elbow and extra stiff and tired from going out to the movies last night plus riding in another person’s car (not SUV). 6:30pm did a 15 minute walk and went to Costco in the afternoon.
10/20 – Bed at 10:45am, up at 1:15am and 7:15am, slept until 8:45am. Napped from 3:45 – 6pm. My body was exhausted over the weekend and needed to sleep 12+ hours today. Body was generally stiff from all the bed rest. Did some shopping at the farmer’s market and Whole Foods. Went for a 20 minute walk at 6:30pm.
10/21 – Bed at 10:45, up at 3:30am & then 7:30am. Napped from 12:45pm – 2pm. The sleep over the weekend helped out as I feel less inflamed & stiff which I need because I am in the middle of a lot of work right now. My neck was noticeably more stiff throughout the day.
10/22 – Bed at 11:15pm, up at 6:45am. Slept from 8:45am – 10:30am and 1:30pm – 2:45pm. My left elbow was hurting as I slept wrong on it throughout the night. Other common pains include the stiff back, shoulders, and right foot. I made my sleep number bed harder to help with my neck. Went for a 20 minute walk at 6pm.
10/23 – Bed at 10:30pm, up at 1:30, then 6:30am. Napped from 12:45 – 2:30pm. Noticeable areas include my sides (rib areas in front), shoulder areas, stiff lower back, neck, right eye (due to meds) and right foot. The sides and shoulder issues are due to washing clothes yesterday. Went for a 20 minute walk at 6:30pm.
10/24 – Bed at 10:30pm, up at 3:45am and then 7:30am. Napped from 1 – 2:15pm. Better than the past few days. Same ailments as yesterday but seem to be half as stiff / sore in the morning. My friend George visited me starting today and we took a walk 8:30pm for 20 minutes. The evening was the coldest in many months and I could tell my body was very stiff during that walk. This week has been quite a challenge with working as much as possible between my sleep, cooking, and dealing with getting my prescription (TB test negative took me an extra week of waiting plus another week with the prescription company & insurance validation – review info on 10/14/13). I’ve been working so much I haven’t spent much time with George today and today was supposed to be the start of my mini-vacation. Plus I saw my Opthamologist and need to keep taking the meds (Pred Forte 4X/day & Cyclopentol 1/day) which makes it harder to drive with artificial light & my eyes strain working at the computer due to the cloudiness.
After taking LDN for over 1 1/2 months I’ve concluded that it really does help bring down my symptoms of inflammation and could be helping my system regulate itself. However, the process is too slow now and I am just too busy to get another Iritis attack, shooting pain problems, and the myriad of other issues I am dealing with. My hope is to have Humira take care of the bulk of my symptomatic problems while helping to fix my Crohn’s disease. The LDN then helps regulate my body and, along with a healthy diet, will fix my root issues. I also plan on continuing with my autoimmune doctor to find other root causes for my high levels of inflammation.
Start of Taking Humira
10/25 – Bed at 10:30pm, up at 4:30am and then 7:15am. Slept from 9-10am and rested from 1-2pm. Woke up stiff & sore due to all the work I’m doing, doctors, insurance, etc. Same old routine with the right foot, left elbow, back & shoulders along with the right eye cloudy from the meds. I began taking Humira in the morning with the pen instead of taking with the syringe like I used to with Enbrel and it’s much easier to administer plus I only have to take one time every two weeks. I was finally able to start my mini-vacation at 6pm (which is just the weekend + a little on Monday) by traveling up to Venice (1st time since March). One great steak dinner & some Chardonnay later & I was beyond exhausted by 7pm…but very happy to be with my parents and George.
10/26 – Bed at 10:30pm, up at 4:45am, then 7:30am. Napped from 3-4:30pm. Noticeable areas of pain / stiffness are right foot, neck, low back & cloudiness in right eye due to meds. 1st day after taking Humira and I can already start to see the effects of the medication. I feel less stiff when I woke up and my Yoga was easier to do in the morning. I had a full sleep from 10:30pm – 4:45am & then it was on & off as usual. Where it started to really shine was I could walk at the Ringling Museum for 2-3 hours. And for lunch I had fries along with a Colada & grilled fish. Normally this would flare me up, but it didn’t. But I could notice my stomach not feeling so good for a few hours after that lunch. By the afternoon I was exhausted but felt better after getting up. Fajitas and margaritas in the evening with fringe foods with no flare-up and my stomach felt fine afterwards. Lower back still stiff & hurting if I stay in a chair too long. Shoulders / neck / mid-back OK throughout day but my sides (front rib areas) hurt a bit.
10/27 – Bed at 11:15pm, up at 5:15am and then 8am. Napped from 11:30 – 1pm. For 1 1/2 years, I dreamed of what arrived today. Woke up much easier and my pain & stiffness is much less. Neck still limited left & right, but better up & down motion. Right eye cloudy due to meds. Went to the cold pool and hot tub (Russian bath style but not as bad as this) at 9:30am for 20 minutes. Drove back to Naples, cooked dinner for me & three friends & no flare-ups. Prior to taking LDN, I could not do it. While on LDN alone, I could do it, but would need help from my friends to cook / clean while I rested. Today, no problem.
10/28 – Bed at 11:15pm, up at 1pm, then 6:30am, then 8:30am. Tried to nap in the afternoon but too much to do & phone calls. Neck range same as yesterday + shoulders & low-back a bit stiff. Right eye cloudy with meds, right foot inflamed & hips hurt. I can now get out of my own bed without using the rope! In the morning was able to do a Plank for 30 seconds and got up much easier than I did trying this on 9/29. Bending down to put dishes away is better but still cannot pick stuff off the floor. Dressing myself takes much less time and is easier to do (feels kind of like a joke now to do). 10:30am walked around the entire neighborhood block for the first time in over a year. 6:15pm walked down the end of the street and took 15 minutes, not 20 minutes like before.
10/29 – Bed at 11pm, up at 6:30am. Napped from 2:30pm – 3:30pm. 1st time I didn’t get up in the middle of the night. Looks like my adrenals are getting back to normal now. Noticeable areas are right eye (meds), right foot but better than yesterday. 8:30pm walked down the street for 15 minutes. Lower back sore in the evening (probably due to plank yesterday).
10/30 – Bed at 11:15pm, up at 6:15am & napped from 3-4pm. Waking up with low back stiffness at 3 out of 10. Neck is still 4 out of 10 left to right & 3 out of 10 up & down. My stools have pretty much normalized at this point and my weight is now 119 1/2 lbs. I seem to gain a little over 1/2 lb. each day since taking the meds. 8am and & 6pm walked down the end of the road.