MY JOURNEY WITH RHEUMATOID ARTHRITIS YEAR FOUR – PART TWO OF 2020

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Rheumatoid arthritis is horrible to have. The next six months, introduced more painful joints and new medication. But having to have my wisdom tooth interrupted my trial of my new medication. Then I had to have a two week break before trying again. This time, it took over six weeks for both of the medication to start to work.

Early July

The beginning of July I had a nasty neck flare on a Monday and by Tuesday I had a nasty cold. The rest of that week, I had an aching foot. This time it was the ankle joint.

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My mum when she popped into see me, commented that my ankle looked swollen. This and the tender neck lasted over seven days. Not nice at all. The ankle problems lasted all of July. I can not walk on this and have to walk on my toes.

Bone Scan

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My bone scan appointment came through very quickly. The second week in July and I was advised not to come off my medication. Which I was pleased with. In a bone scan, a radionuclide is used which collects in areas where there is a lot of bone activity (where bone cells are breaking down or repairing parts of the bone). So a bone scan is used to detect areas of bone where there is cancer, infection, or damage. These areas of activity are seen as ‘hot spots’ on the scan picture. This is why I am having this. Last year, my neck and toes started flaring  when I was trying to reduce my medication.  And also with kidney problems too. My doctor wants to see what is going on inside my body, as things are not right.

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In a bone scan a small quantity of radionuclide is injected into a vein in your arm. It then takes some time – sometimes several hours – for the radionuclide to travel to the target tissue and to be ‘taken’ into the active cells. So, after receiving the radionuclide you may have a wait of a few hours. You may be able to go out and come back to the scanning room later in the day. When it is time to do the scanning, you will need to lie on a couch while the gamma camera detects the gamma rays coming from your body, and the computer turns the information into a picture. You need to lie as still as possible whilst each picture is taken (so it is not blurred). Some pictures can take 30 minutes or more. The number of pictures taken, and the time interval between each picture, vary depending on what is being scanned. For a whole body bone scan, you slide very slowly through the whole scanner and the picture is taken continuously. I had to go into the hospital alone, where I was allowed entry after my hands were sanitized. I first was injected with the drug, then left. Three hours later I was back. My body was scanned, this took fifteen minutes. Then my feet and hands done separately. They both took five minutes each. Three weeks later, I was back at Addenbrooks to get the results.

Bone Scan Results

  • Prominent uptake in all small joints of both hands, wrists, ankles and mid foot bilaterally, knees and elbows.
  • Findings consistent with inflammation and/or degenerative changes in the areas described.

But no mention of the neck. So I asked my doctor who told me that the scan does not pick up spine inflammation very well.

Increased Bruises

And this year, I have noticed more bruises than normal. I do not remember how I am getting them. But I am and they take a long time to heal, sometimes over four weeks. Rheumatoid arthritis is insidious. It not only has the potential for inflammation throughout the body, but it can also lower the blood platelet count. Blood platelets are what cause the blood to clot. A decrease on the number of platelets means that RA patients may see an increased amount of bruising and may even mean serious problems with bleeding. I mentioned this to my rheumatologist in July. Who told me that due to me taking a lot of steriods in the past, this has made my skin thin. Nothing to worry about.

New Medication

So another telephone appointment, and the bone scan results confirmed more inflammation on both sides of the body. He also wants me to stop taking the etoricoxib 90 mg, which I have been taking daily for three years. This was only meant to be a stop gap. Not something to take long term. Too high a risk of heart problems, blood clots and deep vein thrombosis. He wants me to try Leflunomide. This is a disease modifying anti-rheumatic drug (DMARD) developed specifically to control inflammatory arthritis. DMARDs act slowly, over weeks and months. Leflunomide is a prodrug, which means that it is inactive until it is taken. It is changed into the active drug inside the person’s own body. The overactive immune system in RA causes pain, swelling, heat and redness. Leflunomide dampens down this process by ‘switching off’ the cells responsible for this over-activity. It may also work in several other ways. Leflunomide has been used as a disease-modifying anti-rheumatic drug to treat rheumatoid arthritis since the early 2000s. Disease modifying drugs are used to treat inflammatory arthritis by decreasing joint inflammation and damage, reducing the risk of disability and enhancing quality of life. Research into RA has found that the earlier the treatment starts with a DMARD to control the inflammation the better the long-term outcome. Leflunomide is only prescribed by a specialist experienced in the treatment of rheumatoid arthritis. A detailed medical history is very important to ensure the treatment is suitable for each patient. Blood tests are required beforehand and then usually every two weeks during the first six months of treatment and every eight weeks afterwards. Leflunomide is prescribed as a tablet of 10mg or 20mg daily dependent on the clinical judgment of the specialist. This drug acts on an enzyme in the body to limit the excessive reaction of the cells involved during inflammation, thereby reducing the swelling, pain. This was prescribed

September

Fortnightly blood tests are horrible for me. I hate needles so much. But this drug is bad for the liver. But I also started to notice the inflammation on the right side of my body. The side I always thought of as the good side. The right ankle started to play up like the left one.  Not a good thing if both feet are playing up.

October

My first face to face appointment with my rheumatologist. We talked about what next biologic that I could take which is a monthly iv which I am not going to go with yet. I wanted to give myself a good test of leflunomide. I was only on it for 5 weeks before I had to stop thanks to my wisdom tooth extraction. My doctor agreed to try a three month test and see how I go. And then we will look at this again in the new year.  And no more blood tests until next year either, another plus for me !

November

Second lockdown in the UK. So I stayed at home except for one day when I went out to see my best friend. Still waiting for the medication to work again. But no illness, this I put down to my husband working from home. And not travelling on the tube and train.

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