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Year three of my journey with rheumatoid arthritis. I am write yearly updates to show how this affects me, year one is here and year two is here. My condition has shown me, that I can not travel long haul and experience any touring holidays anymore. I can not walk for more than hour as my legs hurt, and the same with sitting in a car. After two hours, I get so tired. I am not doing very well with my condition. Still hoping for a miracle drug, that will mean I can return to work and still travel as I used too. But so far that does not like I ever will.
An unexpected late December appointment at Newmarket Hospital came though. And my rheumatologist doctor changed my medication from Humira to Tofacitinib. And wanted me to have another vacinne, this time it was Pneumococcal. This can prevent some cases of pneumonia, meningitis, and sepsis. And the week, I had this, I also had to have another blood test, a requirement for my new medication. And inject my humira. One week and three needles into my skin. Not nice I can tell you. My blood test result came back, and my heart is getting damaged with the inflammation medication. But it was one of the few things that works for me.
My medication did not come through until March, as funding had to be requested again. I am praying that this works, and I would know within a month. I can not wait to stop injecting drugs as I hate it. Tofacitinib, brand name Xeljanz is part of the class of drugs called Janus kinase inhibitors, which are currently used to treat arthritis. JAKs are enzymes that play a role in activating the body’s immune response, and tofacitinib blocks this process, which may stop the inflammatory process. Because the drug is a small molecule, it is less likely to stop working over time, which is another benefit. Tofacitinib is taken orally, compared to biologics which are admitted through infusions and injections. This is good for people who may find tablets an easier, more pleasant way of taking medication. The drug would be taken in tablet form twice daily for eight weeks, usually going down to a lower dosage for maintenance. My side effects so far that I have noticed is fatigue, I am sleeping for over ten hours a day. Split between 8-9 hrs during the night then an 1 hr nap in the afternoon.
Guess what, with just a week left, I called Health At Home, and they were having to contact Addenbrookes as my prescription was only a month. Some one has made an error somewhere. In late April, the medication felt like it is working but then I found this;
The U.S. Food and Drug Administration (FDA) is alerting the public that a safety clinical trial found an increased risk of blood clots in the lungs and death when a 10 mg twice daily dose of tofacitinib (Xeljanz, Xeljanz XR) was used in patients with rheumatoid arthritis (RA). FDA has not approved this 10 mg twice daily dose for RA
Citric Acid Detox
Late March, I have researching Citric Acid and the effect on my body. Fizzy drinks and chocolate are my only vices. I do not smoke, drink and only take prescribed drugs. So I am seeing if this has an effect on my joint pain. I am detoxing for eight weeks. The same amount of time that my new medication could take to work. No effect on my joints, but I found that not drinking fizzy drinks for eight weeks that I do not miss them. I will probably have them when out for meals but not a home.
In April I had to have one of my now monthly blood test to see how my body is reacting to this new medication. I was disappointed that my inflammation level is still double what it should be and what else can I say. This medication make take longer to work.
A visit to see the biologic nurses at Addenbrookes in Cambridge. This was to see how my medication is working for me and whether they would continue the funding for it. And they will and we just have to give this six months and see how we get on. I did find out that this is a very dangerous drug. Monthly blood tests will be done to keep an eye on my blood, as this can cause cholesterol, it also could damage the liver and kidneys.
Trying Old Favourites
In May with the onset of the sun, I felt better enough to try and force myself outside and try again to walk on my bad legs. This was challenging and it exhausted me so much. But I continued to push myself. I also went to the cinema, this was to see John Wick 3 and I like to be at the back but the stairs to get me there just to do not work for me. So it looks like the cinema will have to change for me. I booked a facial something I had not done since my diagnosis. And again, this did not work for me either. So these two things I am not able to enjoy.
More Health Problems
In June, I started to feel like my old self but then I noticed my fingernails turning a yellow, orange, red colour. I can not explain it well. But this is not normal. I popped into my doctors and asked the pharmacy staff and they advised me to make a doctors appointment. By the time, I saw the doctor, three weeks later. I also started to reduce my etoricoxib down from 90 mg to 60 mg. As this drug is damaging to my heart and I have been on this drug from over two years and the recommended dose of 90 mg once daily is limited to a maximum of 3 days. However after two weeks, I was in so much pain, that I had to go back to the 90 mg but even then that took time, and I was flaring in mid June. A further blood test to see what was going on internally showed that
Yellow Nail Syndrome
More nails turned orange, yellow and I saw my local GP. He told me that he has never seen it before. He was willing to refer to the hospital and see a dermatologist. But he could only do that under a fungal nail diagnosis. And he said, it was definitely not a fungal nail. He advised me to contact the manufacturer (a US based company) or the hospital, which I had already tried too (and with no joy) So I had to wait until August for my next appointment with the rheumatologist.
At my annual check up in the summer. My rheumatologist doctor told me there was nothing they could do for my knees at this stage. I expected this and I am going to try swimming to build the muscle up. My hands are better but the yellow nails and the red painful joints are probably going to continue. The same with my tiredness, sleeping for 7-9 hours at night and then another hour nap the next afternoon, is just another symptom of my disease/chronic condition. Rheumatoid Arthritis is horrible. So I just have to expect this.
I know I could have problems with the new toxic medication, I just did not expect it to be so soon. I had a routine blood test early September, and my doctor noted CKD 3. Patients with CKD stage G3 have impaired kidney function. Only a minority of patients with CKD stage G3 go on to develop more serious kidney disease. Cardiovascular disease, the umbrella term for diseases of the heart and circulation (e.g. heart attacks and strokes), is more common in patients with CKD. It is important to try and identify which patients may go on to develop more serious kidney damage and to try and reduce the chances of patients developing cardiovascular disease. My toxic drugs that work on my inflammation in my body have done this. So I have to make a choice, pain free, more serious health problems in my future or chronic pain and unable to work. I am very torn as I just do not know what to do. This worried me for weeks, until my local doctor and I agreed to try and reduce some of the drugs. Time will tell what happens next !
Short Haul Holiday Test
I decided to test out a pool holiday over three nights in October. I thought that relaxing and being the sun would be good for my rheumatoid arthritis. My mum and I went to Turkey. And as lovely as this was, it was too much for me. The hotel was beautiful and had many lifts so I could get to the pool and the cliff side. But I was just bored and itching to go off into the town to explore. This was my first visit to Turkey and yet saw nothing except the hotel that I stayed at. So this was a fail for me and extremely frustrating. I know I need winter sun and this was my first trip in ten months.
In late October, on a routine trip to the pharmacy. My right foot hurt and ached, this carried on for days. And I knew that my toes joints are now inflamed. At the moment, it is two toes. The pain is at the first MP joint. I went to see my local doctor in case it could be something else. He told me no. It was most likely my rheumatoid arthritis. So I now have to wait for March next year to discuss this with my rheumatologist doctor. I know have to use two crutches for both legs. Having a painful left knee and now painful right toes is no fun at all.
In early November, I started having headaches and pains at the back of my head. Back at the doctors, I told him, that my next appointment at the hospital was not going to be until March next year. And I already was on the last stage of the biologics. I asked for a steroid test for a month, to see if this was inflammation. As this could also be a side effect of the HRT that I was also taking. The symptoms of neck arthritis include chronic pain, muscle weakness, numbness, stiffness, headaches and loss of balance. I know that I suffer with four of these symptoms. And the next week confirmed this. Taking steriods for six weeks was lovely. I just do not understand how one drug that is so bad for the rest of your body can be so good for the pain you feel on a daily basis.
The Mobility Scooter
In November, my husband’s friends mentioned that they knew someone who had a mobility scooter for sale. She had barely used it, and only wanted £250 for it. We went to a mobility shop and found that the only she had was over £1200. So after trying it out, it was the right decision. I have only made a couple of trips, as I do not want to go out when it is raining and too cold.
Touring Holiday Test
My husband and I again went to Spain in December. Being in warmer weather does wonders for my rheumatoid arthritis. But I still struggled with exploring the cites that I wanted to. It was lovely being back there. But next year, if I go I am going to base us in 1/2 places and spent more time there.
Rheumatoid Arthritis has taken my old life away. But I do also have a new life. Every day I am learning. Every day I am growing more patient, sympathetic and listening to my body. I am more aware when I need to rest or sleep. And I take note and do this if able too. I am more aware of the value of every moment. I hope to one day be able to manage a part time job, but who knows. The only drug that works on all my pain is steriods which I can not take every day.