As discussed in my previous post about Iritis, I’ve had enough of playing the chronic inflammation game and wanted my life back. I discussed this over with my Rheumatologist and we both agreed that Humira would be my choice of biologic medication. Not only would Humira block my chronic inflammation, but it is FDA approved to treat Crohn’s disease – one of my root causes. To recap, let’s look over my rates / percentages of health since I got off Enbrel for good on February 7th 2012:
- 10-20% Health - Mid-March 2012: Enbrel out of system, could barely tie my own shoes. Life unbearable at times, but parents lovingly got me through as my body was slowly healing. Many symptoms developed at this time. Rates of Inflammation: CRP spiked from 9 in Dec. 2011 to 142.8. SED rate at 101.
- 20-40% Health – July 2012: Eating and learning to cook a healthier lifestyle improved my condition, but times still unbearable and started a regimen of ibuprofen to function in my daily life. Started many tests to determine root causes of my issues.
- 40-50% Health with Bursts: December 2012 – Found major root causes from the tests I took. Symptoms / issues pointed to Crohn’s Disease / IBS / Ulcerative Colitis (Which might have developed due to the ibuprofen I was taking – Mayo Clinic states: “Don’t use ibuprofen (Advil, Motrin, others), naproxen (Aleve) or aspirin. These are likely to make your symptoms worse.”). My bursts were coming from taking Prednisone (hard to sleep taking this) and going off ibuprofen.
- 40-60% Health: April 2013 – Detoxification off of meds and supplements.
- 30 – 50% Health: June – Early September 2013: Recommendations from an autoimmune specialist put me on a new set of supplements and tests. Although I reverted back to my lowest points in 2013 (I needed other people to help drive me to places and did not leave the house sometimes for a weeks), I did find root issues: Mold / fungus in my house, oxidative stress, and leaky gut syndrome (nutrition dysfunction). Taking medications helped the root cause, but made my system weak. Supplementation either had little help or was harmful.
- 50 – 70% Health – Mid-Late September 2013: Introduction of Low Dose Naltrexone (LDN). With low cost and minimal side effects, LDN boosted my health around 20% + getting off all the “fixing the root cause” medication & supplements.
- 70 – 85% Health – November / December 2013: Along with the Low Dose Naltrexone (LDN), I started taking Humira due to my Iritis attack. Within the 1st 3 days after Humira I saw significant consistent improvement. Increasing weight along with exercise / Yoga has continued to increase my health. In December, back to a “normal” weight, Iron levels back to normal (no anemia), and have more energy than I ever had in my 30s. Rates of Inflammation: CRP rate at 3.3 (better than when I was on Enbrel and had a CRP of 9.5) and SED rate of 4 (review latest test).
With autoimmune diseases, your body produces too much of a protein called TNF. This TNF then triggers an inflammation response that goes throughout the body. Humira is designed to block the receptors that hold TNF as explained in this video.
Humira is used by injecting the grey cap (Cap #1) into your skin (I inject into my thigh) once every 2 weeks. Since Crohn’s disease deals with the digestive system, the Humira injection does not interfere like a pill would.
If you examine my comprehensive autoimmune blood tests, look for the results of my SED rate and CRP (C-Reactive Protein) – they are both markers of inflammation. Normal ranges for SED rate are 0-15 and CRP are 0 – 4.9. In April 2012, my SED rate was 101 and CRP was 142.8; abnormal and dangerously high. After taking Humira, Low Dose Naltrexone (LDN) and all that I’ve learned throughout my journey, my comprehensive autoimmune blood test in mid-November shows a SED rate of 4 and a CRP rate of 3.3; a vast improvement.
Here is an update on autoimmune symptoms listed in my last post about Iritis:
Continued to lose weight and at my lowest was 116 pounds (originally 158 lbs.)
My weight starting Humira was 116 lbs. and has increased to 134.5 lbs (roughly 1 1/2 months time).
Continued nutrient malabsorptionCurrent increase in weight and ability to eat foods I could not before prove I am absorbing food. Fatigue / Anemia (usually sleeping twice a day & needing 10+ hours of sleep / day)I no longer need to take naps and 8 hours a night of sleep is typical (most of the time without the need to get up in the middle of the night). Review my Iron Level tests prior to taking Humira and after taking Humira. Sitting in chair too long makes my body very stiff.I can sit in the chair for hours although my back gets 2-3 out of 10 in stiffness…I can live with that! Stools loose.No problem now, I can poop like a champ! Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.I can now do a Sun Salutation in Yoga, and I can bend over and pick things up off the floor. Flare-ups from foods, sometime even safe foods.No flare-ups because the Humira blocks the receptors that cause the inflammation (but the process still happens). I still avoid the foods that caused me to flare up the most – breads, grains & flour mainly.
- Get cold quickly along with poor circulation & purple fingers (Raynaud’s Syndrome) – I still get this, but less noticeable.
Weak body: Need a rope to get out of bed, can only go to the pool for 10 minutes, no gym workouts, etc.On 12/4 was my 1st major (45 minute) workout on my chest, biceps & triceps. I can now go dancing for hours and walk around the block with no issues. Driving is also so much easier. Did I mention that I removed the rope from my bed (it was the only way I could get out of bed for more than a year) a few weeks ago? That was a great moment. But the last and final straw was developing Iritis on 10/9/13.6 Ophthalmologist visits over 1 1/2 month span (1 month of which my right eye was dilated the entire time), it’s all cleared up. The medicine made my condition much better after the 1st day.
Humira, like all biologic medications, can have serious (even deadly) side effects caused by fungus, bacteria, and virus infections. Liver infections and psoriasis has also showed up in patients taking Humira. My symptoms include increase sneezing and my ability to fight infections. The LDN & eating a healthy lifestyle help my immune system and could have a better chance at fighting infections. Finally, and I know this might sound strange, is that I have to adjust to my new level of energy. It’s hard to go to sleep because I don’t feel like I need to (but when I lie down for 10 minutes I do sleep – kind of feel like a kid again). When I wake up, I’m up and need to do activities if I wake up too early.
- Review updated autoimmune blood tests & compare with older ones with autoimmune doctor – the goal is to find the root issue while the symptoms are under control.
- Switching to another biologic if Humira stops working (scroll down to “How Many TNF Inhibitors to Try?”) due to the buildup of antibodies within my system.
- Future genetic / DNA Modification – read about CRISPR (or see diagram above)
- Using stem cells to fix my dysfunctional digestive system and/or other areas within my body.
Two words: “I’m back!”
Thank you to those who have continued to pray for me. Please focus your prayers on having me find my root cause(s) and for the other millions of people to find their root cause(s) of inflammation.
Since most of the major gains were made in the first week, I will only supply a daily diary for the first seven (7) days and then a weekly diary afterwards.
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.
10/31 – Bed at 11:45pm, up at 2am, then 8:15am. Napped from 1:30pm – 3:15pm. Shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication) are the main issues; minor stiffness throughout & low-back pain. Today I helped out some kids for Halloween and was able to hold onto bags of candy for a long time along with a 2 hour walk. Stayed out past midnight without issue.
Week 2 (11/1 – 11/7) – Sleep continues to be getting up 1-2 times per night along with mid-day naps for most days. Noticeable issues throughout the week include pain / stiffness in shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication). I took a few walks in the evening and was able to travel to multiple stores without issue until the end of the week when I started to develop pain in my right hip. Sleep was also becoming an issue (developed nightmares on 11/2) as I started working 12+ hour days for my company CGschool (setting up events in Boston & San Francisco). Back was also stiffer as it progressed to the evening due to all the sitting & work I had to do. Without the Humira, none of this would have been possible.
Week 3 (11/8 – 11/14) – Sleep continues to be getting up 1-2 times per night along with mid-day naps for most days. Beginning of the week, the right hip was worse (went from 2 out of 10 to 6-7 out of 10 on pain scale) and was due to the workload / sitting too long / walking too far at night / new exercises I would try on the Wii Fit (especially ones balancing on one leg). Other noticeable issues throughout the week include neck stiffness from side to side, some shoulder blade pain (probably due to exercises and sitting too long in the chair) and right eye cloudiness / light sensitive (due to medication). Stomach issues arose in the early week due to gas & trying fringe foods (dairy, crackers). When I started Humira, I was at 116 lbs. Now I am up to 124.5 lbs. (+8 lbs.). 11/8 was a long day & had to fix a major issue for CGschool (was up until 2am). Weekend ate at Roy’s with no issue as they were very accommodating to my food sensitivities. Mid-back continued to hurt along with hip & knew I had to go to the pool. Did a hard workout on 11/10 in the pool (as I need to build strength) which helped my hip heal itself throughout the week. As a side note, if I did not take Humira, my pain would be a 9 out of 10 at this point. End of week was getting better as my responsibilities were getting less – still needed to do 12 hour days for San Francisco class.
Week 4 (11/15 – 11/21) - Sleep continues to be getting up once per night along with mid-day naps for most days. Hips bad in beginning of week healed up mid-end of week (as long as I didn’t do anything to stand on one leg like Yoga exercises or getting my pants on one leg at a time). Right eye continued to get better and 11/19 Opthamologist gave me the OK to stop the meds altogether on 11/24. Range of neck motion getting better but still noticeable and some stiffness in the back through mid-week. Travelling around town again was easy to do. Workouts once at the pool (11/16), Wii Fit 1-minute planks worked and started push-ups / side planks on 11/19 (failed at 5th & 6th rep), started downward dog Yoga pose on 11/22, and walked most evenings.
Week 5 (11/22 – 11/28) - Sleep continues to be getting up once per night along with mid-day naps for most days. As I continue to get stronger, I still feel noticeable pains (probably due to workouts) in the shoulder blades, neck, and back (2-3 out of 10); right hip continues to be fine. My right eye cleared up by 11/25 and my weight is now 128 lbs (+4 lbs. from 2 weeks ago). Starting to get harder to go to sleep due to increased levels of energy (my body was so used to being with so little energy before). Went ballroom dancing 11/24 and felt in right hip again, but cleared up same day / next day. Was able to travel to Venice (it’s been over 6 months since I have been able to leave the Naples area without assistance) for Thanksgiving. Had small amounts of stuffing & lots of mashed potatoes & gravy and I could tell my body wanted more veggies by end of weekend – still no flare-ups.
Week 6 (11/29 – 12/5) – Beginning of week, I needed to get up once per night during sleep but by end of week I slept straight through. My issue is getting to sleep due to adjusting to new energy. Shoulder blades / back / neck (side to side) are 2-3 out of 10 due to all the sitting, travelling and eating (eating is also making my facial complexion worse) Thanksgiving leftovers (not to mention the pumpkin pie). 11/30 had my first major workout at my parent’s gym in Venice (1/2 hour). 12/4 did another major workout (both times were upper body – biceps, triceps, chest, abs) and also able to walk around the block with no issue at all (finished in less than 25 minutes; used to take me 40 minutes). I’m also starting to be able to do short bursts of jogging / running since I lost the ability to run. 12/3 – travelled to Fort Myers and back in the evening time and traveled a few places – no issues. Some days during the later part of the week show no significant pain / stiffness issues.
Week 7 (12/6 – 12/12) – Tested my body’s endurance at the beginning of the week – 12/6 took 3 hours of ballroom dancing lessons, 12/7 2 hours of social ballroom dancing, 12/8 one of my hardest workouts + laps + 2 minutes treading water at the pool for 1/2 hour straight; did it all without issue. Upper workout mid-week without issue but felt it on 12/12. All together I worked out every day and felt some pains, but those are the pains of getting stronger – big difference than a flare-up due to inflammation. Neck range got better throughout the week (was at 3 out of 10, now 1.5 out of 10). As for food, I won’t go back to Pei Wei as they do something that does not agree with my system (had the Thai Chicken coconut curry) & am learning to avoid Chinese stir-fry style meals now. I also learned that I should not do more than a 1/2 a cup of black beans as anymore doesn’t work well with my system.