Etanercept for PA - injections questions and worries

ruthiebabie

Background - I literally woke up one morning in March 2000 (I was 30 at the time) and all my major arm, leg, finger, toe joints were swollen - to this day my doc is unsure of the trigger - I had one small patch of psoriasis on my scalp (size of 10p which had been there bout 5 years).

Any way since that date I have tried without much success many different treatments - injections, steroids, methotrexate, puva plus lots of topical ones for the psoriasis - which is now covering 100% of my scalp, soles of my feet and groin (yeuch).

Anyway in 2005 my consultant said basically we'd got as far as we could with treatments at that time and I had to go away and live with things as they were.

I adapted and managed until middle of last year when things have started to worsen, back pain and pain in my chest which I put down to a pulled muscle but never went away. Joints swollen, psoriasis on overtime and just so tired.

So after going back to the docs I had an assessment today (bloods, xrays, examination) at which Etanercept has been proposed - however they have told me I have to be reassessed in 5 weeks to ensure this is not just a "flare up".

Reading the leaflet it is saying that this is an injectable drug and I'm panicking about this a lot - I'm very frightened of needles to the point I'm shaking when I have bloods done and close to vomitting. The thought of maybe having to do this myself is making want to decline the drug if it is offered. I do appreciate it may well change my life and I'm a grown up and really shouldn't be like this.

I just wondered if anyone had any positive experiences about the drug and could explain the injection process. Could my GP do this (its literally across the road from where I live)?

Thank you

Ruth

maddyc

I was terrified of needles as well but have successfully been taught how to self inject. If it's possible to get the drug as an injector pen (I think it is), it helps enormously. You literally point and click and don't even SEE a needle.

I have seen people go into the rheumatology clinic to have injections, so I'm sure it's possible to get help with them, especially in the beginning.

Good luck, hope this helps

Maddy

staceyh

Hi I understand your concerns I didnt have a problem with someone else sticking a needle into me but when I had to do it myself it was a whole other story! For my first injection I went to see my rheum nurse and she talked both me and my husband (incase I was unable to do on my own through pain) through the process it seems scary at first but takes very little time and isn't very sore. Take someone with you if you can just incase you aren't able to do the injection yourself I found that very helpful and for the first few weeks my husband sat with me while I did the injection which really helped

poppy30

I was on Humira for two years (stopped the drug as we're trying for a family) and was really anxious about the injecting part! On the first day, I went to the hospital all psyched up, saw the needle and turned into a quivering, sobbing wreck so my rheumy had to do the injection...... I was very embarrassed!! :oops:
For the first year I went to my GP's surgery and the practice nurse did my injection. On a number of occasions I did try to have a go but it wasn't happening as I was so anxious about it! :oops: Going to the surgery was fine for me as it wasn't far from my house.... not sure what I'd have done otherwise!
After a year on the drug, my rheumy asked me if I wanted to try the "pens". A nurse visited my home and showed me how to inject myself. All it involved was pinching a bit of tummy skin, holding the pen against my skin, pressing a button and counting to ten..... still nerve-wracking but you don't see the needle at all.... was such a sense of achievement to be able to do it myself! Used to do my injections first thing on a Sunday morning so if I did feel anxious, I did not have the added pressure of having to rush it and I could take my time.

Hope this helps and good luck!

Poppy x

ktl297

Hi,
I have PA too - it was diagnosed when I was 29 about 3 years ago. From diagnosis it seemed to progress really quickly and I was first put on infliximab which is given as an infusion (drip). That wasn't working too well so I switched to etanercept. I have never been particularly scared of needles but I didn't fancy injecing myself! I had a training session with the Rheumatology Nurse and did OK with it. I injected once per week. It didn't work for me though and I then switched again to humira which I inject every 2 weeks and seems to work OK. I know you can get injection pens which make it easier and a work colleague who also has PA has her humira injected by the nurse at her local GP surgery as she is very scared of needles. My hubby came with me to the injection training and the idea is that if I can't do it for any reason he can (although I'm not sure he's too keen). My Mum is a nurse (usefully) and she did an injection for me once when my hands were bad. Humira, etanercept and infliximab are all anti-tnf drugs and they suppress the part of your immune system responsible for the inflammation (tnf-alpha) so slow down the disease and prevent damage to your joints. I have always taken methotrexate with the anti-tnf's to help them work and also to stop your body from developing an immune response to the drugs. I find the methotrexate has worse side effects than the humira but everyone is different - some react differently to different drugs. If your PA is affecting your life I would suggest you give it a go - it might take a little while before you find what suits you!
Good luck with whatever you decide. KT

colinone

Hi Ruth , My story is very similar to yours with the psoriasis and arthritis
Funny enough I was a similar age to. Although for many years the arthritis never really bothered me but the psoriases was the pain of my life. Started a patch on my head and within a year all over me. About 4 years ago the arthritis after having it for years turned baddy on my and decided to show me just what it could do. Today I have it from head to foot but managing it with a little difficulty. I have been on Methotrexate for three years and it did help both the arthritis and psoriasis so much so that although parts of me where red I never got the flakes that I hated so much, you’ll know what I mean. Then 14 weeks ago I went on an etanercept ( Enbrel ) along with the methotrexate it was nothing to do with the psoriasis it was to try and get the arthritis under control. By the way I have RA and PA.
Today you would be hard pressed to find one spot of psoriasis on my body and I have used no creams or anything else. Now the arthritis is bad but I am so happy to see the back of the psoriasis its great. Now the injections sadly I am told they don’t do it in pen form its in what you would think of as a needle but is quite small and the truth is you don’t feel the needle go in and if you take it slow with pressing the plunger you don’t feel that either. You get a book “and it is a book” on the drug and how to use it. Next step it gets delivered to your home. Next step a nurse from the drug company visits to show you how to do the injection and she will call as many times as you require its all up to you. When you are ready you go it alone. If by that time you still can’t do it there are other options like the nurse at your GP, district nurse, or your local clinic. Problem with this and I went down that road is I waited 2 hours in the clinic so I’m back to doing it myself as its quicker. And I don’t have to go out. One last thing I feel like sh-t with all the drugs but hey ho no psoriasis yipppeee Sorry for such a long post. Take care and keep your chin up don’t let it get you down and your half way there.
Collin

ruthiebabie

Just wanted to say thank you for the replies.

I feel encouraged by your comments that this is a managable and positive step forward in having some treatment that might a) be suitable and b) works.

Ruth

feedavison

Hi Ruth

I was diagnosed with PA when i was 31 - i got a bought of very bad tonsilitus and then got guttate psorias all over my arms and legs and plaque psoriasis all over my scalp.
A couple of months later i started to get extreme joint pain starting in my back and spreading to my knee, hips, shoulders, neck, elbows, wrists and hands! I tried a lot of different DMARDs for about a year includign MTX but they all disagreed with me. Eventually i was put onto etanercept. The thought of giving myself an injection terrified me and i really didnt think i would be able to do it. When i went along to the Rheumy nurse to be shown what to do i was very nervous, but it turned out it was actually worse in my head that actually doing it.
It seems like a horrible thing to do but it really is ok. I've been on etanercept now for a year and it really does work, so i don't mind the injection bit so much.
Hope all goes well for you.
Fee

luckybug

I use the pen, I can't grab my skin with one hand so I just press the pen as hard as I can against my skin and then push the top, it stings for a couple of seconds, but my arthritis count is going down so it's definitely doing something right. If you are really afraid and as the injection costs £350 a time, go see your GP nurse and she will arrange to administer it for you. Good luck xx