Wow, so my last post was almost a year ago… How has time gone so quickly?!
I’ve been seen in my Rheumatology clinic twice since last September and a lot has changed! I feel like it is time for an update.
Back in February I saw the rheumatology registrar who confirmed that I have a type of inflammatory arthritis, but was unable to determine the exact type of arthritis. Back then my arthritis was causing me a lot of problems. My SI joints had really started kicking off at the end of 2015, and I actually spent New Year’s Day unable to walk because I had gone on a night out for New Year’s Eve and over did it. Since then, my back hasn’t improved. By the time I saw the Rheumy reg, in Feb, my SI joints, costochondritis, fingers, toes, ankle, knee and my ligaments and tendons were all flaring. I wasn’t in a great way, thats for sure. We decided to step up my treatment plan by adding in Methotrexate (MTX) – an immunosuppressant.
As I had a chest infection and was on antibiotics at the time of my appointment meaning I couldn’t start MTX until I had been off antibiotics for at least a week. I didn’t start MTX until the start of March. I started on a really low dose of 7.5mg which equated to 3 tablets once a week. After 2 weeks I increased my dose to 10mg once a week, or 4 tablets. With MTX you always have to take folic acid to counteract some of the side effect of MTX so I was started on these too… But even with the folic acid the side effects were horrendous. I had nausea 4-5 days a week, I could only eat one meal a day and on top of that, I still had loads of joint pain, stiffness and inflammation.
MTX requires quite close monitoring as it can affect a lot of different organs, especially the liver and lungs. I have been having bloods about every 2-3 weeks since February to ensure my liver was functioning okay but also to check my kidney function and full blood count to make sure my white blood count did not drop too low and so far so good! Everything is just about in range, but there is nothing too out of range to worry about. A rare side effect of MTX is pulmonary fibrosis, which tends to present with a dry cough and shortness of breath. As a precaution, the reg decided it would be best to send me for a chest x-ray and pulmonary function tests to establish my baseline lung function for if there were any issues – but again everything looked fine!!
MTX can take about 12 weeks to kick in, and by week 14 or 15 on 10mg it was clear that my joints weren’t responding enough. I phoned the rheumatology helpline and explained what was happening to the nurses. They spoke to my consultant who increased my MTX to 15mg (6 tablets) but kept my folic acid the same as before. The nausea was way worse on 15mg: I dreaded MTX day, I dreaded eating, I lost more weight. Things were just not fun.
After being on 15mg tablets for about 8 weeks I made the decision to switch to injections. With injections you can sometimes reduce your dose by 30-40% because that is equivalent to how much absorb with the tablets so I switched to 10mg injections via the Metoject pen and so far things are a lot better in terms of side effects. I’ve had 2 doses of the injections so far and although I still have hardly any appetite, I can eat without nausea. I also got an intramuscular steroid injection because my SI joints and hip were making walking without an aid difficult, my costochondritis meant that taking a deep breath was virtually impossible and my shoulder (a new joint that kicked up a fuss from March onwards) was pure agony. The steroids took the edge off everything but my back and chest are still sore, just less sore.
I think that brings us up to speed to this week! Yesterday I saw my consultant rheumatologist who was amazing. My nurses had briefed my consultant on what had been going on before my appointment.When I was called in, before I had even said anything my consultant said this:
“Your arthritis is not controlled. We need to treat this more aggressively, but not over-treat at the same time. It’s a balance, but I would prefer to be more aggressive now because it’s easier to reduce meds than never get full control”
I am so glad that we are taking a more proactive approach, it’s scary that there are medications out there that I wouldn’t be able to access unless my rheumatologist was taking a more aggressive approach.
Once I had updated my consultant on things from my point of view, she suggested 3 options:
- Increase MTX
- Keep MTX the same but add a third DMARD
- Do both
We decided to just increase MTX since I had just had a steroid injection and we had’t given the last increase enough time to become effective, but at the same time we couldn’t do nothing. Starting tomorrow I will be on 15mg MTX injections and I will also be learning to self-inject. I also have open access to my consultant for the next 6 months when my next follow-up appointment will be, so if things don’t settle I can go back and see her with an emergency appointment.
My consultant also confirmed that my arthritis is seronegative because my rheumatoid factor is negative, and that spinal involvement is common with seronegative arthritis. We are now treating my condition aggressively rather than watchful waiting to see if lower doses will help. I feel like this is the turning point, where we will hopefully manage to get full control over my arthritis, or at least it gives us the best shot of getting full control!