I phoned the nurse help line before Easter and found they are going to put me on the biologic Etanercept and I was told I’d get a telephone appointment and that it would be Sciensus delivering the injections. My blood tests have all come back, no sign of TB, but positive for Zoster which I knew it would be as I have had chicken pox, I caught that the age of 19 off my mum who had shingles!
My question is, is it rheumatology that go through taking the injections or Sciensus? Also, does anyone show you the first time how to inject yourself?
I’m so hoping this is going to help, I got an IM steroid injection a couple of weeks ago but it’s only taken the edge off the pain. I dream of waking up without pain in my ankles, wrists, hands and especially shoulders and have stopped saying I’ve got any arthritis as people just don’t get it….🙄 when I struggle doing things.
Hope you’ve all had a good easter
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Akaka
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Hi. You should get a home visit from one of the Sciensus nurses to show you how to inject. The first one you do will be under the supervision of a nurse. Depending on how you get on, they might want to return for the next one or leave you to it.
Being positive for varicella zoster is a good thing and what they want from your pre-biologic screening, as it means you have antibodies. If it was negative, you'd need a vaccine.
Thanks for getting back so quick, that makes things a lot clearer, I suppose it’s just a waiting game now! From what I have read on here about Sciensus they seem very hit and miss. Keeping my fingers crossed.
I haven't had any problems with them or their predecessor Healthcare at Home, but seems a bit of a postcode lottery. Good luck - I hope the etanercept helps.
Shingles vaccine is from GP and if you’re under 70 your RA team will probably have to order your GP to do it as the green book sayes only over 70’s can have it. And it might be the dead one so get back to RA team to check as it takes some time before it gives protection before the Etanercept is used. But you can still get Shingles anyway just hopefully not so badly. Having the virus I think means it will make you vulnerable to Shingles not immune from it as you have to have had Chicken Pox to leave the virus in the body which can become Shingles and you can get that more than once as you don’t catch it because it’s in your own body and opportunistic.
Interesting thanks for the info, I will see what happens next and if I don’t hear anything I’ll contact the Rheumatoid nurses, you certainly have to be pro active as information is not very forthcoming, I don’t think my gp has been told yet that they are moving me to biologics!
Not something to look forward to! My late husband had shingles about 20 years ago in his head and it is horrid and very painful. I remember him going to the doctors and the locum doctor said it was fine and it was just fat globules 🙄! I said I thought it was shingles and he went back and saw another doctor after the weekend and was diagnosed shingles! I am not old enough for the vaccine….
I started 50mg Benepali (Etanercept) a year ago tomorrow...it's been like a true wonder drug for me. I was so poorly in the same places as you before it.
I was (and still) also take 25mg Methotrexate, but this wasn't effective, and so steroid injections. Since Benepali, it's completely changed my life, truly.
Sciensus were a bit iffy to start, but since we got up and running, the drivers are great, always on time, the Sciensus app is easy and helpful, and I find the online chat more effective than ringing them.
I paint again, I can get up mostly knowing how I will feel, predictable mostly. I still get the occasional flare, but usually when am ready for my meds in the week, along with another trigger like stress, or overdoing it.
Much less overnight and morning stiffness and pain, I only need codine very rarely.
I REALLY hope it works the same for you, I was on suicide helplines prior I was in such pain. Now I can barely believe how lucky I am to have a tiny amount of liquid make such a huge difference!
Injecting is really not as scary as it sounds, Benepali is a bit more stingy than my Methotrexate...and I have a leg for each lol.
The nurse will show you, let you have a go with a dummy pen that helps get the feel of it, and mine was there for my first self injection for real, as any reaction usually happens in the first 15 mins so she told me. I have had no side effects. My bloods are 6 monthly for that, and 3 monthly for Methotrexate, and all have been good since I started it.
It's worth showing someone you trust how to inject with the pen too, incase your hands are playing up. My hubby has done mine once, as I squish my leg with one hand and stabby stab with the other, and my right hand one day was not playing ball at all.
Good luck, it's a wonderful thing if it works for you 👍☺️
That’s great to hear, I try and keep positive but the pain gets the better of me at times as it’s unrelenting and I feel worn out. I’m not worried about injecting myself. Ironically I tried methotrexate injections nearly 2 years ago and felt really poorly, the hospital sent a video of how to administer then sent a letter to my gp saying I’d attended a clinic! My doctor didn’t approve and got a nurse at the surgery to do the first one with me. I’m on the methotrexate tablets now which strangely I have been better with in general.
Is Benepali the same as Etanercept?
The nurse I saw at my last visit seemed very hopeful things would get better on Biologics, my podiatrist thinks I should have been on them a while ago but he’s not really supposed to pass an opinion! I just hope it happens soon, initially I was apprehensive about biologics but now after reading about them feel I much better. I’d love to be able to paint again and kneel down, start doing Pilates again, look after my garden etc etc.I’ll let you know x
Hiya lovely, hang in there...I was on increasing doses of Methotrexate tablets, Sulfasazaline, Naproxen and oral steroids...then the Methotrexate injection, started low and went to full dose....then after 3 more steroid injections they went for Benepali (just the brand name I think, says Etanercept in the leaflet I got).
I still have the damage RA has done, but mostly the pain is far better than I ever expected them to achieve.
The unrelenting pain is so hard to describe to anyone who doesn't have it, but am with you on this, it's SO wearing. I was having to pick up my own legs into bed, go downstairs on my bum, and just sat crying in pain so many times, even with codine nothing seemed to give enough relief to sleep.
I had improvement in 3 days, after a week significantly improved, to where I am now in about 3 weeks I think....maybe I just got lucky and my body responded so well to it.
I still don't like kneeling down on hard surfaces, it feels odd more than pain, and tricky getting back up, my painting hand has 3 fingers that don't bend anymore, but I have figured it out, and even sculpt now. I never thought I'd paint again.
But mostly it's been significantly mentally enabling, lack of pain is massive but having RA in the background, not in my face everyday, it's like getting my life back....and will to live, and paint!
The sculpting came about after occupational therapy and Lisa gave me some putty stuff, and it sparked a new thing....so RA not been all terrible lol.
I’m on benepali and MTX, for ankylosing spondylitis. I was very lucky and had improvement in stiffness from the first injection. By 3 months I went from struggling to reach my knees to touching the floor. They do say it can take 3-6 months to take effect. I personally haven’t had issues with scienceus. They will book a nurse to supervise your first injection, and depending how you do, may return for a second supervision. Hopefully you’ll hear soon re a date. It generally takes about 7-8 weeks from initial testing to first injection. Partly due to applying for funding, which is often left till test results show they can proceed. Most Trusts only hold funding meetings weekly or fortnightly. I’m sure you will find that your quality of life improves on them, good luck
I was on Benepali for 9 months recently and had no trouble at all with delivery .they came regularly while I had 6 or so pens left so there was never any need to worry,just a fridge full of pens.it did not work completely for me,so just started JAK tablets which are working after only 3weeks,so there is always something that works for everybody,I feel.the news drugs are amazing.I had no side effects at all on Benepali.nurse from Sciensus came for first injection and I did it from then on with no probs.it is so quick,just a couple of seconds and then over for the week.I did it every Sunday evening in case there were side effects,but there weren’t any!good luck,let us know how you get on.xx
Etanercept worked well for me for around 8 years with no side effects I can recall. It worked quickly and I remember all of a sudden being able to dry my hands on a towel without pain!
Injection pen is easy to use and as said above, once you’ve had your first delivery, it’s all straightforward from then on. Not sure if you’ve got the Sciensus app but that’s where I arranged my next delivery each time.
Hi ,I’m on these injections I order them through the sciences app , you can go online and watch a video how to inject , if you not confident get the nurse to show you , I usually inject in top of my leg , also and steroid , everything is slow , everyday different , hope it goes well for you .👍
Thanks so do I, the steroid injection I had is not doing much , I so want something to ease this pain. It’s now nearly 4 weeks since my hospital visit.
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