Anti-TNF Injections for Psoriatic Arthritis on the NHS

NeilF

I’ve had Psoriatic Arthritis for about 4 years now, starting roughly when I turned 40. I’ve got discomfort in my toes, feet, ankles, right knee, left shoulder and left hand. The consultant has always thought of my arthritis as psoriatic due to some bone erosion in my feet.

I started off on Prednisone and then moved onto Sulphasalazine for a couple of years which helped a bit, but I had to stop due to low platelet levels picked up in a regular blood test. I’m now on a 500mg Naproxen twice a day and 20mg a week of Methotrexate along with Folic Acid. From what I’ve researched, what I’ve gone through isn’t out of the ordinary for the condition.

But the Methotrexate isn’t working for me. My consultant is suggesting Anti-TNF drugs. He’s provided me with information on Adalimumab and Etanercept. I’m happy to give anything a go. My concern is that I can’t stand injections. Depending on the drug, I believe the injections will be once a week or one a fortnight type of frequency.

But what I really want to know is about the injections. Does the NHS prescribe basic syringes and vials of the drug, or pre-filled syringes or fancy epi-pen type jabs? Does anybody have any experience of them? How long does it take for them to kick in? Any first hand experience information would be great!

Tom

Hello and welcome to the forum, @NeilF

You were diagnosed as having Psoriatic arthritis some 4 years ago. You have been treated with sulphasalazine but have had an adverse reaction. I have some experience of methotrexate, which I self-injected for four years, but have now gone onto sulphasalazine and hydorychloroquine. The NHS arranged for free regular deliveries of injection pens that are easy to use. I had good results after 10 weeks or so.

Here is some information from our website on your condition and links to other information I hope you will find useful.

https://www.versusarthritis.org/news/2020/january/all-about-psoriatic-arthritis/

https://www.versusarthritis.org/news/2020/november/anti-tnf-transforming-the-treatment-of-inflammatory-arthritis/

Good luck and let the Forum know how you are getting on.

Tom

NeilF

Thanks Tom. I see the consultant next week and I’ll let the forum know my experience of Anti-TNF drugs, if I’m prescribed them. Hopefully next week I’ll get another depomedrone jab in my bum, which normal works wonders for a few months.

Elmbow

Hi

I've been taking anti-TNFs for psoriatic arthritis for a few years and it couldn't be simpler. They come in auto-injector pens so you don't even see a needle. With Humira I don't even feel anything. I've found it much easier than taking pills tbh - I realise that doesn't help someone who hates needles, but I get virtually no side effects so that has to be a good trade off?

Benepali didn't do much for me and I stuck with it for just under a year. Humira worked straight away. Everyone will be different.

Can I ask how low your platelets dropped on sulfasalazine? Mine fell by 60% to 120 within 2 months of starting it and nobody flagged it at all even though I'd complained of bleeding gums and even bleeding through my clothes from where my blood was taken. When I asked about it they said it wasn't low enough to cause any problems, which was demonstrably untrue.

NeilF

Thanks for the message, @Elmbow

I have no idea on how low my platelet count got on Sulphasalazine. I did not experience any symptoms like you described. I did have any symptoms at all, I was just told the result from one of my regular blood tests. It wasn’t really working great for me, so I didn’t really question it and was happy to try an alternate drug.

Thanks for the information on Humira. My consultant has given my information on Adalimumab, so Humira is one of the potential options for me.

It sounds reassuring that you found it painless and couldn’t see the needle.

Flycatcher

Has neutropenia on Sulfasalazine, which was lucky because then getting adalimumab would be hard.

NHS prescribed automatic pens that are simple to use but I'm still learning to deal with anxiety. It doesn't hurt AT ALL, just the fear.

NHS can offer you to come in for a training and supervised injections when you need it, also my nurse was great at talking me through the fear (I faint because of needle phobia!).

CBT is excellent for this, have a look at tips online.

I'm two months in, still no effect, flaring and anxious about whether it will work, but know that I can do injections now because the last time it was easy and painless, so that's evidence for me that next time it will be the same and I can do it!

Just remember to breathe!

Tish87

Did it take u guys long in getting prescribed the injections? I’ve been flaring for 15 months and they keep fobbing me off saying they need to follow procedures and apply for funding, run loads of blood tests etc and it’s likely going to be another 4 months before I get my first injection! I’m dreading having to wait cus it’s already been over a year of hell!

NeilF

I had the appointment with the consultant last month. It's a 2 month wait until I've got a telephone appointment about having the injections. I've no idea how long after that it'll take to get started.

I had a depomedrone injection when I saw the consultant and my joints are a lot better at the moment. I hope it lasts for a few more weeks or months.

Tish87

I’m glad ur joints are a lot better after the deopmedrone injection, I took an allergic reaction when I was given it so they won’t give me it again :( I’m having to rely on a very low dose of oral steroids which isn’t working too well. I’ve a face to face appointment at the end of June when they will start the process but it’s the waiting that I hate as things just keeping worse!

NeilF

I gave myself my first anti-tnf injection yesterday. I've been prescribed Imraldi. The NHS have organised the prescription through Sciensus. It's a pre-filled epi pen and a nurse came around to supervise my first jab.

After some hesitation, I did it. The weird thing was that I didn't feel the needle. I thought I had done it wrong but there was a small blob of blood on my thigh afterwards.

It'll be a while until any effect might happen. But I've started now and I'm feeling positive that I've got to this stage.

Ellen

Well done @NeilF

I really hope this medication is the one which really helps you 🙂

Very best wishes

Ellen

jamieA

https://community.versusarthritis.org/discussion/comment/686534#Comment_686534

It's exactly a year today since I was diagnosed with PsA and I've been prescribed most of the drugs you've listed. Like you methotrexate didn't seem to work for me. I was prescribed Amgevita - another Adalimumab biosimilar in late July this year to run alongside the methotrexate and sulfasalazine. By a week after the 2nd injection I could really feel the difference. By 2 weeks ago I was back to walking 50-60kms a week. Unfortunately I've taken a chest infection and was admitted to hospital last week. The rheumatologist I saw told me my blood CRP level was 1 - it had peaked at 340 last November. So for me the biosimilar is making the difference.