So grab a coffee, a comfy seat and I shall begin.....
The break in Italy was just what I needed. Beautiful sunshine, breath-taking views, gorgeous food and above all, sheer relaxation. I arrived home feeling good and ready to take the journey towards building a career in health & social care...
While I was there I got a couple of mosquito bites, usual for that time of year and usual for me to get. Apart from an annoying itch, bites have never bothered me before.
Over the next week I became very itchy and noticed a small rash on my leg. I went to the doctors and we agreed it was probably my arthritis reacting to the mosquito bite and to expect a small flare.
She prescribed a steroid cream and antihistamines to help with the itching.
The following week (end of Sept) I had a routine appointment with my rheumatologist. I moved to the Midlands about 5yrs ago but stayed with the same team from when I was a child, meaning my rheumatologist is based in the South East. As you can imagine, my journey to the hospital is a bit of a trek so I stay over with my family. Meeting with the rheumatologist, we discussed how well my hip replacements had gone and how other joints have just been whinging for months, especially feet and hands. I thought it might have been because I'd been using crutches and not done a huge amount of walking with the operations. However, my rheumy checked my joints and said he suspected my arthritis was active again... How active would need to be confirmed by blood results.
He told me that the results would be with my GP in 7-10 days who would then put me on the disease modifying medication hydroxychloroquine. He said it in such a laid back manner I just nodded and calmly asked if active meant it had come out of remission rather than a flare. He said yes because the pain & stiffness was prolonged. I picked up the blood form and walked to pathology. If I'm honest I'd heard the words but they hadn't sank in. I felt like I was in a bubble, floating along the corridors.
Pathology was heaving! I booked in and collected my number... waiting time was 1 hour. Luckily the cafe was right opposite pathology and if you sat in the garden in a certain place you could see which number was next. The sun was shining so after grabbing a latte macchiato I decided to make the most of it.
Sitting on the picnic bench, with the warmth of the sun against my back, I looked at the blood form. Seeing the ticked boxes and the notes, I started to panic. What if the arthritis couldn't be controlled, what if it went back to being as aggressive as it was before... so much spinning around my head. I wanted to cry but I couldn't, not there, not in front of everyone. I could feel the tears filling up and I swallowed hard, trying to hold it all back. Conscious that I needed to distract myself, I decided to share the news with friends and also to followers on Twitter & Facebook. The response was lovely and helped me keep it together.
Arriving back at my mums, I was greeted with a big hug and a cuppa tea. That weekend although I took it easy, the idea that my arthritis was active again kept swirling around my head. One minute it would feel like a blur, like a dream, the next it was like a ton of bricks had been dropped on me. Part of me felt angry that I'd just got my mobility back and was ready to move on to a brighter future, part of me felt lucky that the remission had lasted 21yrs (YES! 21yrs)
All the time this had been going on, the rash from holiday had spread from my leg to my arms. By the Monday I felt like I was climbing the walls so went back to the doctors and saw a different GP. He went through some questions and as the cream & antihistamines hadn't worked, he diagnosed it as scabies!
Explaining his reasoning, that I could have picked it up in Italy, he prescribed permethrin which I needed to cover my whole body in as well as hubbys (in case he was infected, even though he had no symptons)
I had to wash clothes & bedding every day at 60c for the next week and to be honest, I felt dirty!
A week later and the rash had spread to all over my arms, legs, back and tummy. I was given another lot of permethrin even though hubby had still not got any symptons but I was so desperate to get rid of the rash. I was also going through a bottle of eurax lotion every couple of days.
My blood results had returned which confirmed that arthritis was definitely out of remission but luckily wasn't aggressive. Unfortunately, until I could get the rash under control, I couldn't start the hydroxychloroquine because one of the side effects is a rash which wouldn't help with treatment.
Earlier in the year we had booked a self catering holiday in Devon and we toyed with the idea of cancelling but I desperately needed a change of scenery so we went. It turned out to be a holiday of mixed emotions. Some days were lovely, relaxing in the sunshine, others I just felt so stressed and emotional. In the end we came home early and I booked in with the doctor again (this time I saw one who has supported me in the past)
First thing he did was confirm it wasn't scabies *relief* and said it looked very much like a condition called prurigo nodularis, which can be mistaken for scabies. Prurigo nodularis is a skin disease that is also linked to immunodefiency diseases. Its characterised by itchy nodules no larger than 0.5cm in diameter.
I was prescribed a few more meds.... fucibet cream (to treat the rash) and atarax tablets (sedating antihistamine). In the meantime my rheumatologist had confirmed that bloods had also shown I was anaemic so GP prescribed iron tablets.
All of this had taken me to mid October. The rash finally started clearing by the beginning of November and I was officially started on hydroxychloroquine on 12th November...
The next few months were very stressful and I truly discovered who my true friends were. Amazes me how many friends are there for the sunny days, but rain makes them invisible...
It can take up to 6mths for the hydroxychloroquine to kick in. The worst part is always the side effects. Had a few severe migraines which made me sick but luckily they stopped after about 6 weeks.
After discovering the arthritis had come out of remission, I decided to transfer to a rheumatologist nearer home. While it has been nice staying with the same team, they have changed over the last year, with many retiring. I'd also have more visits to see the rheumatologist and if arthritis is active, last thing needed is to be driving 100+ miles. I'd been with the surgical team for the last year so it made sense to have it all in once place.
The transfer went smooth and I met with the new rheumy a week before Christmas. I have to admit that I was quite anxious. Like someone who has been newly diagnosed, you want to know you are in good hands, that the team will support you. Straight away I knew I had made the right decision.
We discussed the history of my arthritis (LOTS of it!) and worked through a plan of action. While we were confident the hydroxychloroquine was going to help, especially as the stiffness had improved slightly, I was still in quite a lot of pain. I was given the pleasure of a corticosteroid injection to help calm down the arthritis further.
The next few days felt like I'd drank a gallon of coffee. Everything that I couldn't do, suddenly I had the energy to do but I was good and took things very slowly. I was feeling better and certainly wasn't going to undo that.
Onto now...... The steroid injection is still helping. I'm waiting for a referral to a podiatrist to discuss shoes.... and yes that means I need to have them made (hoping they've changed since I last had them!) I'm also being referred to a specialist foot surgeon after discovering that when I had a 'simple bunion removal' it was actually a fusion of my big toe.
I take each day as it comes. I go to an exercise class once a week and while I may feel it the next day, I do make sure I pace myself.
My goal is to train in my chosen career path of health & social care by the end of the year. I'm currently keeping myself out of trouble with my writing and volunteer work.
Will keep you posted as this year progresses....