Hi Everyone
Just thought I'd give an update on my f2f last Thursday.
A bit of background, started on 90mg of etorcoxib January 2020, 200mg of hydroxychloroquine added in March 2020, diagnosed with psoriatic arthritis November 2020 and 20mg methotrexate added, March 2021 leflunomide added at 10mg, September 2021 leflunomide increased to 20mg. October caught a bad cold and chest infection so advised to stop methotrexate which was now being taken by injection, developed severe pain in side, back & front of ribs on left side, sent for urgent chest x ray after antibiotics didn't work, then a CT Scan, all results normal.
Also been suffering with pins & needles in feet & legs, spoke to private consultant who said the pain in my side etc sounded like a trapped nerve caused by inflammation, he also said that the pins & needles could be caused by leflunomide and to reduce dose to 15mg. December 23rd rang GP as the pain in side was so bad I couldn't face Christmas suffering, prescribed prednisolone at 20mg, this dramatically improved the pain so it was only a niggle.
Eventually saw NHS rheumatologist in January 2022 after a year on the waiting list, ran through everything that had happened over the last 2 years including the pins & needles and pain in side, he said the pain in side could be muscular, I had my doubts about this but............ he arranged for me to have neuropathy tests and a spine & hand x ray.
Had neuropathy tests and saw rheumatologist again in March, the neuropathy tests were pretty normal along with the x rays, I told him how my right shoulder was starting to hurt again and he offered a steroid injection but said he thought it would be better if I had an ultrasound guided injection and would refer me for this.
I told him how ill metoject makes me feel, nauseas, brain fog, giddy, like wading through mud and he said I could stop it but it was up to me on which was worse, the pain or side effects. After the appointment I could have kicked myself for not standing my ground on how bad metoject makes me feel.
On my birthday in March whilst away in the New Forest caught covid, was supposed to be given anti virals but an absolute nightmare being referred from pillar to post, spoke to rheumy helpline to said to stop metoject & leflunomide until testing negative and feeling well again, went nearly 3 weeks without both drugs and oh boy could I feel it by the end of the 2nd week.
Went for ultrasound injection Friday 13th May (I know lol) but the radiographer said he couldn't do it as there was a small tear in my tendon, he said I needed to be referred to an orthopaedic surgeon and would write to the rheumy advising this and for me to telephone the secretary to also let them know what the advice was as my next appointment wasn't until September.
Rheumy rang me and agreed I should be referred, I said that the pain in my side was back with a vengeance, unable to sleep as my shoulder was also giving me so much pain, he agreed to give me 10mg of prednisolone for a week then to taper off to 5mg for a week. 10mg took a slight edge off the pain in my side but it was still excrutiating, rang helpline a couple of times and eventually a nurse rang me to say the rheumy wanted to see me, felt like a naught schoolgirl being called to the headmasters room!
Anyway, saw him last Thursday (we were on our way to Birmingham for Gardeners World) all my usual suspect joints were hurting which as daft as it sounds I was glad of so he could see, he said my recent blood tests were fine (CRP <1) and I replied that with psoriatic arthritis I understand bloods can show as normal, I also took the document Hidden kindly shared which described the pain in my side to a tee, the rheumy said he'd checked back on all my tests and spoken to the team including a muscoskeletal radiographer who all said there was nothing to show, he did say however that he believed me regarding the pain and said he thought it might be beneficial for me to have a full bone / body scan which would show cartilages & tendons so waiting on an appointment for this as well as orthopaedic surgeon.
He said again regarding the side effects of metoject I could stop it if I wanted to but didn't offer any alternative, when I asked what do I do in the meantime as missing just a week of metoject my other joints were flaring up he said possibly biologics but I would have to meet NICE guidelines, he said I'd already had sulfasalazine which I replied I hadn't so now I'm giving that a go, I was so relieved I didn't have to take metoject anymore, it has really helped (not completely, but better than I was) but the dread every week before I used it was getting worse and worse as I knew I'd be feeling rotten again for 5 - 6 days and just wanted some sort of normality back, it's bad enough being in pain but feeling like you're losing your marbles too was too much.
When I asked if I could take prednisolone too for the interim he replied that if I really wanted it he would give it but, the scan wouldn't show up any inflammation if I did, we agreed that if it gets too much I can ring him and he'll do me a prescription, I am a bit worried as starting a new drug which can take up to 3 months again to work and wondering how much pain I can put up with before I crumble but I'm going to give it a go, the worst part is the not sleeping and having missed one dose of metoject my shoulder is starting to play up bad again.
Fingers crossed I don't have to wait too long for the body scan.
Sorry the post is so long winded, after we left the hospital we had to drive to Birmingham getting back Sunday and I look after my granddaughter on a Monday, I also needed to get my head around everything discussed, back to fortnightly bloods and only recently got to 2 months.
I had a letter this week to say following my recent clinic appointment I'd be getting an appointment with a drug monitoring nurse, can anyone tell me what this involves please? previously all my meds were prescribed by the private rheumatologist and I only had to have fortnightly / monthly blood tests.
Deb xx