Really don't know what to do...I'm not currently on any RD meds only Prednisolone. Due to side effects I can't take DMARDs, Enbrel put me in A&E and Humira caused high BP, palpitations and I felt really unwell for a week after injecting. I've been on Prednisolone for 3 years and desperately trying to wean off. I got down to 6mg when trying to persevere with Humira as It did keep RD at bay.
I took my last Humira injection on the 10th December. My Rheumatologist left our ever disintegrating hospital in January and I was told that appointments for his replacement would be around August as the new Rheumatologist worked out of another hospital in a different town and the patients at our hospital would be seen as a backlog. I decided to go private as I was worried that I'd start to flare once Humira was out of my system.
The only rheumatologist I could see privately works out of another town. My consultation was private but he could only treat me in his NHS clinics. At my initial consultation the Humira was still in my system so I had very little swelling. He sent me for scans on hands and feet which came back positive for feet, negative for hands. At my review appointment he told me he thought the pains I was getting was fibromyalgia and he didn't think I had RD. I could have cried when he said the waiting list to see him, as a new NHS patient, in his clinic was 3 months. He said he'd write to my GP to give me some painkillers as I can only take paracetamol due to GERD. My GP gave me Tramadol but I'm reluctant to take them after reading they can be addictive.
Three weeks after my review I guess Humira was finally out of my system as the pain and swellings came creeping bag in my hands and feet and I'm now in a full blown flare. My GP recommended the rheumatologist see what was happening so I contacted his secretary and she made another private appointment. He told me it looked quite aggressive (nodules already forming on my knuckles) and he would contact the specialist nurse to get me started on a new biologic, in the meantime increase prednisolone to 15mg until I see her. I contacted his secretary after a week went by and she told me she'd been off and hadn't seen his notes yet. When she tried to get me an appointment with the Nurse it's going to be 8 weeks.
You all know the pain I'm in right now. I can barely move my hands and my toes feel like they're going to burst. Do I increase Prednisolone again or take the Tramadol? Can anyone advise me on the lesser of these two evils please? I know it's only short term until I get new RD meds in my system (fingers crossed they work)