As I am early in my journey, I have decided that every few months I will write a little update on what I’m doing to help manage my condition.
June And July 2019
Disease Modifying Antirheumatic Drug (DMARD): Sulfasalazine – 4 tablets daily.
Painkillers: Amitriptyline – 10mg daily before bed. Naproxen / Ibuprofen – as and when needed.
Probiotic – 1 tablet in the morning with a glass of water before eating (affiliate link).
Turmeric capsules – 2 daily, 1 in the morning and 1 in the evening.
Omega 3 – 1 capsule daily.
CBD oil – a few droplets daily. You can read more about this here.
Acupuncture. I’ve been having acupuncture since I was initially diagnosed and I really find it helpful. I see Kelly Parsons in Cheltenham and she is so knowledgeable, and generally just really supportive of me – regularly being a listening ear when I need it. I was seeing her weekly and am now going fortnightly. She focuses on anti-inflammation, pain management and also emotional regulation – it’s clever stuff!
Physiotherapy. I had a “sit and wait” appointment time for this, which resulted in a wait of 1.5 hours. I didn’t find the session overly useful, I was just given a few exercises to do for my neck and elbow. One useful factor I did find was that the physiotherapist told me it was over to push myself if it felt a little uncomfortable, e.g. carrying a shopping bag on my affected side. I have now been referred for hydrotherapy which I’m excited about, and also to see the hand specialist due to hand involvement.
Rheumatology appointment early June to begin course of sulfasalazine. I discussed what was affected physically and was also referred for an MRI. If this confirms spinal inflammation then my doctor discussed that I will likely be put onto a biologic drug called Cimzia which I will inject.
Multiple calls to the Rheumatology nurses for support. I had a reaction to the medications and all my glands swelled, and I felt dizzy and generally rubbish. I had a few days off the meds at the advice of the nurses and then restarted. The same reaction occurred when I increased to 3 tablets, so I dropped back down to 2 for a week before increasing again.
MRI scan of my spine and neck to look for inflammation, this will then determine my treatment moving forward. I am currently awaiting the results of this. *edit to add* The results for this now have come through and bizarrely show no signs of spondyloarthritis, which does not explain my crippling neck pain and how limited my mobility is in my neck. This also means I don’t qualify for Cimzia. So whilst I am pleased I do not seem to have spondyloarthritis I had got my head around being able to start biologics which are the most cutting edge treatment. I am awaiting an appointment to come through from my Rheumatologist so hoping this comes through soon so I can discuss what may be causing my neck pain. They did also pick up they I have a disc bulge on my lower back, not connected to the arthritis.
And that’s it. Day to day is still a struggle. I am still in pain all the time, but the level of pain does move in terms of severity. I’m generally quite weak, especially in my elbow and fingers which is tough with managing a 2 year old! My right knee has also started to play up which is frustrating. I’m remaining optimistic though ❤️