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Update

Hey everyone,

I thought it would be good to give an update, in case my experience managing psoriatic arthritis might help someone.

I have had psoriatic arthritis for about four years now. Most recently, I was on meloxicam and leflunomide, but recently stopped using the latter. In September I quit my job of fifteen years, which was a source of stress and dissatisfaction, in a part of the U.S. rife with mental and physical illness (the south). Over the past four months, I have used much of my time to focus on holistic wellness. My break from work may soon be coming to an end, since I have been given a job offer! I will be doing work more in line with my values, in a beautiful part of the country.

Over my break, I have really tried to slow down and simplify my life. I have furthered my minimalistic philosophy of living so that I have more time to care for myself and enjoy life, and spend less time doing things that don't add value to my life and collectively increase stress levels. I have picked up pickleball, and miraculously, my body is holding up just fine despite an athletic style of playing. I am doing bodyweight and band exercises about three days a week, and am slowing down and varying my routine. A few weeks ago I started doing yoga. I download an instruction video from Youtube to follow at home. At first I was simply following the videos without variation, but more recently I have adapted the instructions, modifying poses and pose durations to better help create release and rejuvination for my body. In particular, I have been focusing on extending the range of by body where it has been limited by inflammation or where I am guarding even when no inflammation is present. The most significant poses for me involve full extension of my back and neck, flexion of my lower back, and bend over to stretch my hamstrings. I am slowly regaining flexibility in some areas while also receiving an occasional rush of invigorating chemicals to my brain!

On the leflunomide, my psoriasis had been slowly worsening. In addition, my right hand near my knuckles became extremely inflamed a few weeks ago, which I think was probably a side-effect of that drug. I have since discontinued it, and am currently just taking meloxicam. My doctor gave me orders for bloodwork, so my plan is to stay off the leflunomide for a few weeks and then go in for labs to see how my numbers look.

My rheumatologist had previously prescribed a clobetasol shampoo for my psoriasis, but I was finding that it only worked for my scalp, and that the plaques on my arms and legs were becoming too thick for it to have much effect on them. He then prescribed me a topical ointment which I used for a few weeks, but found to be messy and have little effect.

The past few weeks I've been trying something different for the psoriasis. I am taking two or more hour plus baths per week, soaking in hot water with a small amount of the clobetasol shampoo, along with a small amount of magnesium salt. In the five or six weeks I've been doing this, my psoriasis has retreated in a big way. I still have the plaques on my head, but they are lighter in color and slightly smaller. The more recently developed plaques near my elbows and on my lower leg have shrunk in size drastically and are much less noticeable. I feel really good about my progress and plan to continue the ritual (I also get a lot of reading and thinking done while lounging around, haha).

The past few weeks I have been using CBD oil daily, combining it with a cafe au lait and exercise to ensure it goes to my head (yes, CBD oil can be psychoactive like marijuana at a high enough dose, or at least for me it does). This helps me see beyond unhelpful and harmful thought patterns in favor of better ones, allowing me to be more aware of my pain and feelings, and to come up with better means of managing them. It also releases my inner-extrovert and I am much more social and less anxious in social settings.

I am also getting out of the house a lot. I no longer have internet, cell phone data, a home theater, so pretty much all there is to do at home is journal, watch a movie or documentary on my computer (have to download it while in a coffee shop or at the library), listen to music, exercise, read, cook, or talk on the phone. I find myself wanting to venture out a lot more. I am volunteering a few days a week at a nonprofit thrift shop, and recently found a great venue for playing pickleball outside in the sun (yay vitamin D!). I go to the library or the coffee shop a few days a week to check email and whatnot, but am finding I am just fine without it at home or on my phone.

In terms of sleep, I am still having issues. I really would like to try CBT, but dread the whole sleep deprivation part. I probably spend about ten hours in bed every night, seven or eight of which I am sleeping soundly. It seems like it takes my body and mind a long time to wind down lately, even though I feel mostly care-free right now. I am thinking it may have something to do with the CBD oil and coffee, and am trying to find that perfect balance of benefit and cost. Caffeinated coffee seems to be a serious bioenhancer for CBD oil, for me at least, and I try to take both first thing in the morning. I am gradually reducing one or the other to help find an optimum amount, while also trying to hydrate more during the day and early evening to help flush both from my system before hitting the hay.

Overall I feel like I am headed in a good direction, thanks in part to some persistence with major life changes that seem to be paying off, lesser tweaks to my life, and getting out and being more social.

  1. This is all wonderful to hear, . It must take so much dedication and determination to makes all these changes, but I am guessing you developed more incentive with each positive outcome. I hope the new job allows you to continue your routine and that will will continue to see improvement. Have you considered melatonin to help with sleep? It won't keep you asleep, but it should help you fall asleep initially if that is your issue. Thanks for the update. Hopefully, it will help others who are struggling with symptoms. Wishing you the best. - Lori (Team Member)


    1. Hi Lori. Thanks! Yeah, I really feel like I am making some progress in some areas...still a ways to go, but heading in the right direction. Working from home during COVID and then quitting my job and having a few months off really has been a blessing, I have really been able to slow down and focus on my wellbeing. Getting out of the city really made a difference as well--I am more a sensitive introvert nature-loving type, and living in a large concrete jungle in the southern U.S. was not a good fit for me. Moving further into the country, to a rural town in the mountains of the northwestern U.S., would be a much better one.


      I've tried just about everything for my sleep. Right now, I am drinking magnesium chloride salt dissolved in water, taking about 2.5 mg melatonin, and one tablet of doxlamine succinate at bedtime, and repeating when I wake up in the middle of the night. I had a seamstress custom design blackout curtains for my room that velcro to the window frames, ensuring almost no slivers of light seep in after sunrise. I custom modified earplugs to minimize occlusion effect, to be able to sleep in near-perfect silence. I have made a habit of really slowing down in the evenings, reading (from a real book) for a few hours almost every night before going to bed.


      Lately, I am in bed by around 10:30 or 11. I find it is taking me a long time to fall asleep, and my sleep earlier in the evening seems very light. Usually I will wake up between 3 and 4:30. If I get a small bite to eat and take some more sleep aids, I usually fall back asleep, and the second half of my sleep feels deeper and more restorative.


      Lately my sleep seems worse than normal, but I am not fully sure what's causing it (or maybe in denial that the CBD oil, while helping in some ways, is hurting in others). I have been drinking a very small amount of coffee in the morning. However, a few weeks ago I went on a fishing trip and stayed at a camp (fishing cabin in the marsh), and every morning drank a full cup of coffee. And my sleep while staying at the camp was some of the best sleep I had experienced in years.


      Also, I tend to watch a show on my computer to help fall asleep and get back to sleep. I think my propensity to fall asleep is highly dependent on the show. I dim the screen to a custom level, and use f.lux to change the color of my screen to about 2500k (very reddish). I think that's doing more help than harm, if I can avoid the temptation to watch more stimulating shows and stick to things like Rob Ross painting sheep jumping over fences.


      At times, my sleep drive seems incredibly strong; often while reading at night I will get really tired. But once I get into bed I start to feel awake again.


      I might try spending the fist half of the evening sleeping in a different bed in my house and see if that helps. Or move my bed around, or other things that may help break any associations between my bed and sleeplessness. Anything but CBT sleep deprivation. 😮

      1. Hi . Those are some wonderfully healthy routines. I also use melatonin at times as well, but I have found that my body gets used to it if I use it every night and it becomes ineffective. It helps if I use it every other night or take a break for a few weeks. If you are looking for some new approaches to your sleep issues, you might find some helpful advice in our sister community for people with sleep disorders, Sleep-Disorders.net. Sleep deprivation does not sound like an approach that would work for me either and it doesn't sound healthy for someone with an autoimmune disease. Even if it helps in the long wrong, it seems it would put a lot of stress on the body for the length of the deprivation and possibly lead to flares. I hope you get some good, healthy sleep tonight and that you have a great weekend. - Lori (Team Member)

      2. If you're taking Melatonin, you might try a vacation from it for a time to see what happens. Melatonin is known to stimulate immune function, thereby reducing the efficacy of immune suppressants. The Mayo Clinic actually warns not to take melatonin "if you have an auto immune disease." As for other methods of getting to sleep, I have found that going completely decaf (both coffee and tea), and having a cup of roiboos or decaf green tea in the evening helps me wind down. And on Apple podcasts app there is a podcast called Get Sleepy that I have found to be extremely helpful. Nowdays, I'm asleep within mere minutes of listening to it.

    2. Thanks Lori and Eric! I'm going to try dropping one or two of the sleep supplements and then cycle them, taking only one or two at a time, to see if that does the trick. And will look at the sister community about sleep. I definitely noticed the effects of the magnesium and doxylamine succinate tapered off, less so the melatonin. I also rearranged my room a little today, in hopes it might help break any associations with my bed and sleeplessness. I guess the good thing about my sleep issues right now is that I can somewhat make up for quality with quantity...though it would be nice to feel rested on about 8-9 hours, instead of 10-11 with about 2 of those hours spent trying to fall asleep or get back to sleep.

      1. Hi Eric, I have had serious sleep issues with my ms that I had to deal with. The ms clinic had me on zoplicone for years which is pretty much standard because we take stimulants during the day. However, I was worried about long term side effects of this drug as the chemical profile is almost identical to benzodiazepines. My son convinced me to try cannabis, not cbd. Long story short, as an academic I studied it until I was confident that I wouldn’t be harming myself and knew exactly what I was getting into. Years later, I make my own infused olive oil that I take a teaspoon before bed and sleep like a baby. It does not put you to sleep when you ingest it, but it keeps you asleep. I vaporize it to go to sleep if needed and I use indica strains to make my oil. The pain relief, anti inflammatory and muscle relaxing benefits are a huge bonus for me.

        1. Sorry for the very late reply. That's great that cannabis is working for you. I've tried cannabis before bed in the past, with the opposite effect, I became hyper-alert and couldn't fall asleep for hours. Actually after a few times of taking cannabis at night I decided to only take it in the morning or afternoon, so that my mind would be able to slow down before going to bed.

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