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Part two of my journey with rheumatoid arthritis.

NHS

Back at Newmarket, my rheumatoid consultant was as disappointed as I was that the last two Humira injections have not work well. He has agreed to continue and re-fund my Humira for the next three months to see if I improve and requested that I return to increasing my etoricoxib to 90 mg instead of 30 mg. And he is referring me to Springfield hospital to get my knees looked at. As if they can sorted, then my pain could be better by my next appointment in four months time.

Orthopaedic Surgeon

Back at Springfield Hospital I made an appointment to get my knees sorted out. I have had enough of being house bound. And I know that there is a lot of damage in my knees. Thankfully, the x rays shows that I did not have an arthritic knee as in damaged bone and now I am booked in for a MRI to try and worked out what and where the pain is.

And I have had physio to strengthen the muscles as since October last year, I have been house bound and that would have weaken them.  You have to remember that I have been on steriods and now humira that unfortunately has not worked on my knees. So I should have a better idea within a months time. But nothing yet to strengthen the muscles instead acupuncture needles to try and release some of the pain. And I will be back after seeing the Orthopaedic Surgeon. It turns out that this could be chronic pain. I have started to have cramps in my calves during the night. When will this be over ! One good thing is no surgery yet, as if I did it would be every ten to fifteen years. And that does not appeal to me at all.

Trying To Heal

During the summer, I decided that enough was enough and started to look how to heal myself. I found this on the internet. I have already change my diet and take note of when my body tells me to rest and heal. So I brought a Groupon deal, the 300 item intolerance test includes food, non-food items, pollens and plants found in the garden. This test covers a wide range of dairy, wheat, eggs, fruit and veg. The test result are here. I know I have hayfever, I have had this every summer since my early teenage years. I also asked my local GP to do a blood test to see if I had any other problems like deficiencies with any other vitamins or infections.

The Cancer Question

The blood test revealed an increase in my Ca 125 level and my doctor wanted me to be checked for Ovarian Cancer. This was so scary and researching this condition made me feel even worse. The symptoms are very similar to my rheumatoid arthritis so having lots of tests to rule this out. Thankfully it turned out to be endometriosis and fibroids. And looks like all related to my rheumatoid arthritis.

My intolerance test came back with six items I have to avoid. Wheat flour which is in everything I eat. So my rheumatologist agreed with and I have to remove this from my diet. This also was challenging. But you can read about the wheat detox here.

Inflammatory Bowel Disease Question

My rheumatologist also wanted me to be tested for IBS, Crohn’s disease or ulcerative colitis. These conditions can cause very similar symptoms to irritable bowel syndrome. This meant testing my stools. And I had to collect them in this sample. Not a pleasant experience. But thankfully, everything down there came back normal.

More Inflammation

In early November, inflammation started in my right ankle. The pain actually caused me to wake up in the middle of the night.  I was hoping that it was just over doing it in my first visit to London this year. But even resting up over five days, it is not the case. I know have to use two crutches for inflammation in both legs. This is not good for me.

Changing Medication

So my rheumatoid consultant is changing my biologic medication. As Humira only works on some of my joints. There are others that could work on my other painful joints. But this is not happening until January 2019 when I have had further tests to check for crohn’s disease. He wants me to reduce my Etoricoxib from 90 mg to 60 mg. But within a week, I had to return to the 90 mg. It is just too painful to try and continue. I am back to lots of sleep (10 hrs of more a day) and the stiff joints and pain in the morning. I need to try and get off Etoricoxib because the risk of heart attacks and strokes might increase after prolonged treatment, especially with high doses. But it one of the many treatments which works for me.

Travelling

I went to Latvia and Lithuania last May and had missed up my humira injections. Due to changing hospitals, my humira prescription was valid for 5 months and I had told my rheumatologist that it was 6 months. And when I was packing, I called Health At Home about my next delivery as I needed to sort this out. They told me my prescription had run out. So I got in touch with the Newmarket hospital and the Addenbrookes Rheumatology Team and left four messages. No one got back to me so I then packed all the steriods I could find as if I was going to be without humira for a month, I was going to need to take something.  And I finally got back on humira the week before my trip to Europe. On my trip to Austria, Slovakia and Poland in June I again struggled. I could walk around all the cites for about an hour and just enjoy my time there slowly. But thankfully I always found beautiful spots to rest and enjoy the sunshine. Norway and Belgium were both challenging. And I realised that I am getting worse when I do city breaks. I am just not enjoying them anymore. Russia was my dream trip and I again struggled but mentally I was over the moon to be there. My long hauls trips were both challenging in different ways. Vietnam and Cambodia, I struggled with the touring starts in the morning and the set long days. Argentina and Brazil was a little better but again the long days were too challenging. Spain at the end of the year, was a god send. My husband had made plans, but we let ourselves take our time, wake up naturally. And the warm weather helped me so much. So that has made me question a lot of things in my life.