Biological medication for PA

Nette02

Morning everyone, I am hoping your experience and guidance may help

I have  psoriatic arthritis and rheumatoid now .Have tried Methotrexate, Sulfasalazine and Lefluromide but had awful side effects and not been able to tolerate and had to stop taking the most recent ones (Lefluromide) as just felt too ghastly.

My consultant said I’ll likely have to move over to the biological option, but there doesn’t seem to be any developments with regards to this. I’ve read online data and guidance re the protocol and I just feel like I’m going round in circles.

Pain and discomfort and swelling are increasing and my ability to do things physically decreasing, and it’s all severely impacting my life now.I know this isn’t helped that I’m not on medication at the moment. I’m just feeling quite desperate about it all.

I’m seeing the consultant today.  Whenever I see her my joints just don’t seem to look as swollen as they do at other times and I don’t feel like I’m being listened to. I don’t want to move onto any injections as I’m petrified of needles but fear it’s the only option and would appreciate if anyone’s got any guidance as to how they made that step that might help guide me through the next steps please. 

jamieA

Hi @Nette02

I've been on the self injection adalimumab biosimilar Amgevita for my PsA since late July 2021. I take it along with sulfasalazine and MTX. It's certainly helped me significantly as neither sulfasalazine nor it combined with MTX had worked. I know what you mean when you say joints don't seem as bad to medics when they are examining you. I'd like to know the criteria they use to determine how swollen or aching a joint is.

I've found the self injection of Amgevita is relatively easy. The needle does not protrude from the sheath so you don't really see it unless you go looking. The actual injection is very slightly discomforting - a bit like someone pinching you - but nothing more. Both the rheumatology nurse and the service provider - in my case Lloyds Pharmacy - provided coaching in how to do it.

When I look back to how I was in my first year with PsA before I started on Amgevita I wouldn't wish that on anyone.

I hope whatever biologic you get prescribed works for you.

Nette02

Hi JamieA,

Thank you so much that’s really helpful info. Appreciate the reassurance on the use and ease of administering too as that’s a concern.

I saw the consultant and she’s applying for funding for the one you’re on. The swelling was of course not visible today but I fortunately had clear pictures taken on bad days clearly showing the swelling and even a video a friend took on Sunday when things were bad.

Shame it’s all such a minefield but great to have a community such as this!

jamieA

Hi @Nette02

That's a good idea to take photographs and a video. I keep an A5 diary which I update daily as I find it gets difficult to remember exactly times and dates of when I've had issues.

It's crazy the hoops that have to be gone through to be prescribed biologics. I was told that two standard DMARDs had to be shown not to have worked and 3 joints needed to be shown to be swollen. It was 4 weeks from the tests - ultrasound and blood tests - before I was approved for the biologic. At the time I was told the biosimilar Amgevita cost the NHS £3550 a year and the contract is a yearly one that needs to be renewed. I live in Scotland and the NHS outsources the provision to Lloyds Pharmacy clinical home care. Four pens - 8 weeks worth - are delivered at a time by a refridgerated van. I bought a small fridge to keep the supply in to keep it separate from the standard fridge contents. I also notified my power provider as they give priority service in the event of a power outage.

Nette02

Hi JamieA, apologies for the delayed response but haven’t been on line. You comments however are incredibly helpful and whilst not good that you too had to jump through hoops, is reassuring that it’s not an issue with me. I wasn’t aware it’s a pen also. This is great to know as am seriously needle phobic (and have been a bit of an ostrich and skimmed over any injection details 🤦🏻‍♀️). The tip about the fridge is an excellent one and will remember to contact the energy provider too. Thanks again for the advise and has sincerely reassured me!!

Welsh1

Best of luck I know what you are saying about not being listened too I had a much awaited appointment this week I am OKscored low that's all they seemed to be interested too. but side effects from hydroxychloroquine and lots of health issues going on which keep being boxed by gp or rheumatology worn out going to one to another with no resolution after waiting ages for appointments. I was put on a higher dose of hydroxychloroquine than what i should be for my weight due to in his words there not being a 300mg tablet so take another 100 been on it for ages.I will take pictures next time but looking to move Rheumatology as experience with nurse not good either.

jamieA

Hi @Welsh1

My first rheumatologist was not helpful. At my first consultation he told me I had to 'suck it up' regarding my pain levels. At the 2nd consultation I'd just been released from an emergency admission to another hospital where a rheumatology consultant saw me and said if I'd been his patient I'd be on biologics. My rheumatologist responded when I told him by saying he wouldn't take advice from some doctor I saw - despite me giving him the consultants name. By my 3rd appointment I wrote out a detailed history of my treatment, pain levels, condition and failure of the first two DMARDs and stated that if he wasn't prepared to help me I wanted referred to another rheumatologist. I copied in my GP. I had been told that if I put a letter in it had to be acknowledged and added to my records. I was asked to come back 10 days later to be tested for biologics and started them about 4 weeks after. I changed my rheumatologist by my next scheduled appointment and the difference is like chalk and cheese.