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RA at ten

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I have had rheumatoid arthritis for ten years.  My shoulder joints are badly damaged as are the joints in my feet and my hands. No going back. All my other moveable joints are inflamed. Hip joints damaged. Yet my knees are fine.

I have just started Kevzara. It suppresses IL-6 as did Actemra. However, each medicine is just a little bit different than the others. I expect it will help for a while.

The only medication that worked for a long time was methotrexate, MTX. That was for seven years. Then I developed a necrosis of radiated breast tissue. Methotrexate black box warning thirteen. Ten months  and one surgery to heal. No more methotrexate. Too bad. Methotrexate helps the biologics work better.

I am on a maintenance dose of Medrol and I have extra for worsening symptoms. Plus I am on Tramadol.

Ten years ago my symptoms seemed to start abruptly. They were severe enough for an ER visit. I have never been in remission. A biologic will help maybe 50% for a year.

I am also giving cannabis a trial run. Legal in New Mexico. I think the right mix will help.

My Cannabis Plan.

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In New Mexico recreational cannabis is legal.

Medical cannabis has been legal for years. I had a medical cannabis card in 2017. I tried it and what I ingested made me feel very dizzy.  

Both my son and my rheumatologist have encouraged me to try again. For the last month I have read quite a bit about RA and cannabis. Since I don’t care to smoke or vape cannabis, gummies seem to be a good choice. I also use Hemp Cream which helps.

Currently, I use the following:

Wyld Strawberry Gummies, hybrid, 20:1; 20mg CBD:1mg THC in each gummy.; I take half of a gummy in the morning and half in the evening. Goal reduce pain and inflammation.

Wana Quick Gummies, hybrid, 1:1, 10mg CBD and 10 mg THC in each gummy. I take a third in the morning, a third in the afternoon, and a third in the evening.

Strawberry Kiwi Galactic Gummies, sativa,10mg THC in each gummy. I cut these in four, I use these when I need more than the above.

All these gummies are from established companies with excellent quality control. New Mexico has high standards for its labs and dispensaries. The cannabis industry is established here.

Cannabis is helping my rheumatoid arthritis.

 I am still in the testing stage. I would like a balance of THC and CBD. They complement each other. I would like to know a lot more.

I don’t know if you are familiar with the endocannabinoid system within our bodies. Sounds like science fiction. Discovered in the 90s. Neurotransmitters. Somewhere in the knowledge of cannabis and the endocannabinoid system, lies the solution for my rheumatoid arthritis.

A Journal Entry

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Journal

May 2023

Bob has been thriving on the kitchen counter. Bubbling. Fragrant.

Francis was sick last week. Listless. Guarding his tail. No appetite. Unable to get on my bed by himself. He is better. He doesn’t look so sad. But I think he is still not back to normal yet. I will keep an eye on him. He will be nine this summer.

David’s bed has arrived in a box with many, many screws and gadgets. He will need to look at it for a while before he puts it together. It will be lovely once its together and in his room. Finally.

I woke up this morning with a night’s worth of pent up pain. This pain is deep and saturates my body. As  the years pass pain seems to seep into all corners of my  body taking up permanent residence. Like it has found a home. Every corner seems to ache.

I have Tramadol and a Wyld gummy. 20:1. CBD:THC. I was fine through coffee and the Times.  I understand a combination of CBD and THC are best for pain relief. I think I would like a base of the CBD with varying amounts of THC. During the day I take small pieces of Wana Quick gummy 1:1 CBD:THC 10mg each. Still not enough for severe RA.

The Wyld and the Wana companies are reputable and have good quality control. This is new for me and might be my solution. We’ll see.

Eventually I will get a medical card and will get it through one of the doctors who specialize in cannabis. Rheumatoid arthritis is a common reason for getting a medical cannabis card.

I found a good recipe for quick pizza dough. NY Times. Instead of two pizzas, I made four individual pizzas. Simple sauce and cheese. Plus, my son makes a good salad for us each day.

Gordon Lightfoot has died. His music is wonderful and peaceful. Although his life wasn’t peaceful, he had a productive, busy time in the music world. And he left us with some good music.

Managing RA Pain

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I connected with Health Unlocked when I was starting chemotherapy for my third cancer. I was told I would be losing my hair. I wasn’t told how it would happen. I wanted to know so I turned to Health Unlocked, a British program where people discuss issues about living with their cancers.  Painful hair loss is not uncommon. My hair loss turned out to be rapid and painful. I was relieved to see my hair go. And then I was relieved to see the pain go.

A few years ago Health Unlocked expanded their support to rheumatoid arthritis. It seems that there are a lot of rheumatoid arthritis patients living in pain. Rheumatologists do not have a solution for their patients number one symptom, joint pain. In fact many refuse to take responsibility for the debilitating pain those with RA experience. Patients are left to their own devices to find solutions. Frequently, primary doctors are left to fill in and manage the RA symptoms that rheumatologists fail to address. No wonder RA patients become depressed.

Over time I found that the following helps me.

  • Low dose Medrol with increases during a flare.
  • Tramadol.
  • Voltarin ointment helps the itch of inflamed tendons and muscles.
  • Hemp cream is a big help on irritated joints.
  • Paraffin wax treatment is good for sore, fatigued hands and wrists.
  • Cannabis is new for me.  I use Wana Gummies 10 mg THC/10 mg CBD.1:1. Hybrid with Terpenes. I use 5 mg at a time every 4 or 5 hours. If I have too much I become dizzy so it is best to stay at 5mg doses. It relieves my RA pain.
  • Can’t sleep: A bowl of ice cream always helps.

Cannabis works and it also relieves my mind of my fear of spending my final days in excruciating pain. Remember that Cannabis is legal in New Mexico. Both medical and recreational. Rheumatoid arthritis will frequently qualify a person for medical marijuana.

Pothead

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Pothead is a revived expression. I started thinking about it while I sit in my favorite chair reading my favorite author. I am contented and don’t need to move.

My second experience with cannabis is much different than the first. Cannabis drops an iron curtain between me and my pain. When the cannabis wears off, the iron curtain lifts and my pain returns. It is a strange feeling to know pain is still there but it is hidden from view with a bit of a gummy.

Managing cannabis and pain. Enough cannabis to relieve pain but not enough to become a pothead. Instead of cutting the gummi in half, I cut them into four pieces. I take a piece every three hours. I use 20 mg. a day. It is a total of twenty mg  THC and twenty mg CBD, hybrid.

CBD is good for pain relief, but it works better with a small amount of THC included  in the ingredients.

I was in considerable pain when I woke up this morning. Hands, feet, shoulders, neck. My shoulders feel like boulders rubbing against each other. Coffee for me. Potty break for Francis. The pain fades with Tramadol and a bit of the marijuana gummy as I catch up with today’s news in the NY Times.

Today I am going to make what my family used to call Spanish rice. Ground beef. Sautéed with available vegetables. Mixed with rice. Tomatoes. Green chili. Spices and herbs. Baked. Tasty.

According to Google, a pothead is anyone who uses marijuana regularly. I think of a pothead as a person who stays under the influence of cannabis. So I guess that is going to be me as cannabis solves my rheumatoid arthritis problem.

Marijuana relives RA pain.

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At my last appointment with my rheumatologist, she mentioned that my biologic, Tocilizumab,  Actemra is all there is for now. I had been on methotrexate for seven years until I had a bad complication that included surgery. I’ve been on a variety of the biologics over the years. Actemra has kept me at fifty percent for the past year. It is beginning to lose its effectiveness. Maybe 35-45 percent at best.

I thought that it is a good time to retry cannabis. My son brought me to a dispensary, Greenleaf. A salesperson checked our ID’s. I had already reviewed the products they carry on online. I had selected a hybrid of 5mg THC and 5 mg CBD. It is a Wana Quick called Strawberry Margareta. There are ten candies in the container. Each with 5 mg CBD and 5 mg THC. The second container, harder to open, is Pomegranate Gummy. It is also 1:1. 10 Mg. Each candy has five mg CBD and five mg THC. Both reduce inflammation and pain. There is no high with CBD.

I have been taking 5mg.half a candy. About every 4-5 hours. That is two a day or 20mg a day. My pain is currently gone. I also have that nice little feeling of no cares. Great for resting. I imagine it will pass.

I alternate the cannabis with 50mg Tramadol. Much better relief.

New Mexico legalized medical marijuana years ago. At the time I filled out a form and brought it to my primary or rheumatologist for them to fill out and add their seal. I sent the paper work to state. When I tried it the first time. I felt very dizzy. It was not good. So time passed, years probably, and I am back at it. I think the dosage is better controlled. I have the pain relief I needed.

New Mexico has legalized recreation cannabis. No medical card is required, For the stronger stuff, a person needs a medical marijuana card. I will probably work up to getting one. Cards are easy to get. From your doctor or one can be securedon line.

Rheumatoid arthritis Hands

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My feet were the first to become affected by rheumatoid arthritis, but my hands were right behind. They were painful and swollen as big as melons. My knuckles and wrists were affected. My fingers kicked in later. As time went by the tendons in my hands failed to work properly. First the left and then in a little while my right joined in.

For a while I lost the use of both hands. I could use my pointer finger on my right hand. I was used to typing the whole keyboard (typing class in high school). So my one finger had difficulty finding the keyboard my brain knew well.  Eventually I gained the use of my left pointer, but not the use of my other fingers on the keyboard. So I peck away.

The worst of it was accidentally knocking things over. I lost several cups of coffee that way. Glasses. Anything in the way of my poor hands. It was frustrating for me. That has improved.

My grip was fine as long as I was paying attention. If I wasn’t, slender  sheets of paper would slip through my fingers.

I was sent to physical therapy for my hands. Eventually, I went home with fabric braces that locked my fingers into position. I felt immobilized. I personally felt that my hands were better off being active.

I have compression gloves also but when my hands are swollen I can’t get them on.

Best for me are four things:

  1. I hand wash my dishes in hot water. Feels good.
  2. When my hands itch, I rub in Voltarin.
  3. I use my Thera Bath.
  4. And I put them up on a pillow when all else fails.

Francis makeover

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Francis is an eight-year-old cockapoo. We inherited him from a family who considered him to be too much work after four years. He is a happy dog. He enjoys being a part of our clan. He is easy to live with. Cockapoos do shed. They just don’t lose their hair. It stays on their body and ultimately mats. So, we took our boy to Petsmart Groomers. This is his new picture.

I like him either way. I think he is more comfortable without mats. Next winter we will need to get him a sweater. We had two inches of snow yesterday. Beautiful.

Rheumatoid arthritis and eye disorders

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We do know that the same inflammation that causes pain and swelling in the lining of our joints courses through our veins damaging the lining of blood vessels and our heart even when our cholesterol profile is perfect. We understand that and we try to keep ourselves heart healthy in every way that we can.

What no one mentions is that this same inflammation that affects our joint lining and affects our heart and our blood vessels also affects our eyes. This inflammation can cause permanent damage if we are not paying attention.

RA affects your sight.

Inflammation caused by RA invades the entire body including the eye. RA inflammation of the eye is common and may cause the following symptoms:  Eye redness, eye pain, eye dryness, blurred vision, dry/gritty feeling in the eyes, sensitivity to light. RA inflammation may cause mild to aggressive diseases of the eye.

Dry eyes are common with people who have RA. Using artificial tears may be necessary to keep the eyes moist and avoid infection. Eye dryness may be associated with Sjögren’s syndrome in about 20% of the cases.

Scleritis and uveitis are arthritis related eye problems.

  • Scleritis is an inflammation of the sclera, or eye wall, that causes a thinning of the eye wall usually affecting those between the ages of 40 and 70. Symptoms include redness, deep eye pain and light sensitivity. Even with mild eye trauma, scleritis may be dangerous as the thin eye wall could split open.
  • Uveitis is when the uvea, the vascular layer of tissue between the retina and the eye wall becomes inflamed. Symptoms are eye pain, light sensitivity, and blurry vision.

Some people with RA may develop glaucoma. This happens when inflammation affects the part of the eye that helps drain the nutrient rich fluid that helps keep the eye inflated.  If the eye fluid cannot drain properly eye pressure will increase and damage the optic nerve.

Glaucoma has no symptoms in its early stages.  As it progresses, you may see colored halos around lights. Your vision may be blurry, and you may notice blank spots in your field of vision. Eye drop medication can help reduce the pressure. Glaucoma may also develop as a result of steroid treatment for RA.

Cataracts occur when the lens of the eye becomes cloudy. This condition may be caused by RA steroid use. The lens can be surgically replaced. It is a common surgery.

Rheumatoid Arthritis causes systemic inflammation in the body. Your eyes will be affected by this inflammation. Regular checkups with your eye doctor will pick up eye changes caused by the inflammation of RA.

We also know that Plaquenil (hydroxychloroquine) puts us at risk for eye damage. If we do take Plaquenil, we understand that the danger of eye damage is small. That is what we seem to need to know and that is all we are told about RA and our eyes.  

Atherosclerosis and RA

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Lately, my RA has been under control. I hate to jink myself but today Actemra is doing its job.  A landscaper cleaned up my yard for spring with a lot of pruning and trimming. Francis finally made it to the groomer. He has been sheared. No more mats. He looks tiny without his heavy fur coat.

 Today the plumber is coming to install a new toilet for my son. This will be his second trip. The first time we learned that the old toilet did not have a shutoff valve and the street shutoff was clogged with sand. The city came this morning to turn off the water. The plumber is due anytime.

Yesterday I made cinnamon rolls. Yummy. It is great to have energy. I have no idea how long it will last but I am enjoying it.

I have  not spent much time thinking about RA complications. Surprisingly, the biggest one is atherosclerosis. Chronic inflammation and atherosclerosis are closely linked. Scary thought. It is what kills those with RA. It is the atherosclerosis that causes heart attacks and strokes. Clogged blood vessels. The newer drugs have not made a difference in the mortality rate for RA.

I take a statin for my lipids and medication for my blood pressure. We eat lots of vegetables and we only eat beef occasionally. We try to stay active. That is the best we can do.