Just to let you all know especially Brychni how the appointment went this morning with the consultant.
Whilst last week when he rang me to say stop the MTX as it was making me feel so sick for 5 - 6 days and the pain was getting worse, today he said oh, I still want you to take it, I'd managed to get some Cyclizine from my drs to counteract the sickness so fingers crossed these will help. I mentioned that I'd seen some people have MTX as injections which helps against sickness but he said that in the main they're normally for those who struggle to take the tablets, which contradicts what I've seen on this site but I'm happy to give the Cyclizine a go even if it does mean more pills!
He's now prescribed me with leflunomide as well as the hydroxy & MTX, and I'll have to have fortnightly blood tests for a while as well as the monthly ones for MTX, he said that he could give me another steroid injection but would only be able to give me one when I said the pain was so bad in my left elbow, right elbow & shoulder and hamstring so he's given me prednisolone at 20mg for 2 weeks, then 15mg for 2 weeks down to 10mg for 2 weeks, hopefully I'll have seen some benefit from the leflunomide by then although leflunomide can take 6 weeks - 6 months to work.
When I told him my GP hadn't referred me to the NHS list as he had requested in January he didn't look pleased, I said that the letter had now been sent last week and he said that it might be marked as an urgent referral, fingers crossed
He's given me 8 weeks supply of leflunomide and as long as my blood tests come back ok and hopefully there's improvement I'll continue with the triple therapy.
Hope this helps @Brychni x
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yes, I've just e-mailed my boss (my dad) to ask if I can take the rest of the year off, to be honest I'm struggling to get my head around it all, initially being diagnosed with PsA in November and the addition of MTX & then having a flare and going down hill rapidly in December as well as trying to work from home using the keyboard which is aggravating the pain in my elbows / shoulders and hamstring and then today the introduction of leflunomide and prednisolone and the sickness pills, it's a lot to take in when you're not feeling 100% lol.
My Dad's just come back to me after my long winded e-mail explaining it all with a one line sentence saying "Do not worry about work just forget it and stay home, we can cover everything so forget work and let’s hope these doctors know what they are doing, dad" He's definitely a man of few words 😂 x
It is odd how Rheumy's interpret things. I only started MTX injections after my first appointment with my new Consultant decided I needed an increase in dose. He asked why I hadn't moved on to injections after being on tablets for a year. I had no answer so injections it was.
I hope your new regime helps. A couple of things, when I started LEF I was asked to have the pneumonia vaccine. If you've not yet had one maybe something to ask. The other is LEF can increase your blood pressure & I was advised to have it taken at my first 3 fortnightly bloods. It's normally bob on but it did initially increase it though it settled the longer I took LEF. Unfortunately I wasn’t on it very long but I do remain on MTX.
Thank you, I was wondering if he'd increase the MTX from 20mg to 25 but no mention of it.
funny enough he said I'd need to have my blood pressure taken regularly and when I spoke to the blood nurse at my drs about booking a blood test, I mentioned blood pressure & weight check, she said she's no idea when I'd have this as she only books blood tests but normally these are taken every 2 months for those on LEF, she's only seen those who've been on it for years so I'm a newbie for her 😉 I'm guessing I might hear more perhaps once they receive the consultants letter saying I'm now also taking LEF.
I'll have to remember when I next speak to anyone at the docs about the pneumonia jab as I haven't had one just the flu jab, I've got my monthly MTX blood test on Monday so will try and remember to ask then, thanks for that added information x
You'll only need to have your bp taken to check the LEF isn't increasing it too much. Once it settles it may only be periodic, but I wasn’t on it that long to see to be honest! Maybe with the phlebotomist not having taken new drug bloods for LEF she wasn't aware of the monitoring guidelines. It should be written up in your report though, for clarity.
I must admit I'm not sure if the PPV is advisable just for LEF, it may apply to any rheum med but LEF was my most recent & last DMARD I tried. I'd never questioned it before.
Mmmm . You are having problems with MTX so a perfect candidate for injections. I didn’t ask for MTX injections I was offered as they felt I wasn’t getting the full benefits from tablets.Why not a steroid injection? I’m given one without asking if I flare. Hope your nhs appointment comes quickly will be interesting to see their opinion.
Thank you me too re NHS appointment, I think with the steroid injections it’s because he wouldn’t be able to inject multiple times on the same day, he asked if I wanted one & when I said I assume I can’t have a few this was when he said to try the steroid tablets as hopefully they’ll give some relief generally
LEF changed my life it worked so well life was completely normal and no side effects. But have some paracetamol handy as it did make the pain worse for a few days and then suddenly about 12/14 weeks later the RA had just gone. I hope it works as well for you. x
Oh thank you for this so glad it worked so well for you, I’ve got plenty of paracetamol, cocodamol & amitryptaline lol if it does, fingers crossed it doesn’t x
Can’t understand your GPS reluctance to move you to MTX injections ..other than cost. My consultant reviewed me after 4 months on 20mg methotrexate tablets (increased from 15mg) and said the improvement wasn’t sufficient and he suggested I move to injections. He explained that this would ensure I got the full benefit of the dose as it would be direct to the blood stream rather than passing through the digestive system/stomach where some gets lost as excreted waste. Made sense and definitely made a difference/improvement.
Hope your new regime helps get things under control for you, but don’t be shy to push the issue again with your GP if not 👍
Gosh, it seems very complicated. The Metoject are definitely better than tablets for sickness, so why he fobbed you off?? He doesn’t seem to be the most sympathetic consultant I’ve heard of. I’m afraid I’m very headstrong and have at times refused to take meds especially when they make me feel worse than the RA. I also, will only add one new med at a time and then wait a month to see what my body feels like.
Guess I’m awkward, but my Rheumy works with me, so I’m lucky.
You must do whatever you feel is right for you, it’s your body and your choice.
I hope this regime works for you and you soon have relief.
lol, I'm normally not a push over but, at the moment I keep thinking perhaps he's got the diagnosis wrong even though all the literature he's given me and what I've read on this site along with other reputable sites think I know in my heart of heart it is PsA, I was worried that he might say well if everything I've had isn't working then it can't be PsA and basically he wouldn't be able to help, silly I know but didn't want to push anything as yet x
It’s so difficult isn’t it? Especially as we feel quite vulnerable when suffering and unsure of diagnosis. I was less likely to argue in the early days, and my first Rheumy got very antsy when I referred to some research I’d done online - the actually wrote in the letter to my GP “she’s been on the internet”. I’ve learned a lot since then...
hahahaha, I know what you mean, when I mentioned the full name of NRAS and quite quickly said it's not a facebook page it seems reputable straightaway he said oh NRAS so had obviously heard of it
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