NRAS

Biologics?

I hav been diagnosed with Ankylosing Spondylitis and am waiting to start the biologics Benepali. My Rheumatologist ordered them 3 weeks ago, and said if I didn't hear by 4 weeks to get her to chase.

Do they normally phone to organise delivery or send a letter, also is there then a wait for the nurse to come and show you?. I am keen to start in the hope things will improve. Thanks in advance. I am a nurse and would be happy to do without training if that is allowed 😏

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Hi I waited about 1 month and then the health care at home nurse came to my house and showed me how to do it and explained everything, they handle it all and they phone me the week before I get a delivery

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Did the H@H team phone to organise appointment, or do they just send letter telling you when they are coming? Thanks

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They phoned and from there take care off everything

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How many injections come in a delivery?

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I have deliveries of 12 injections (4x3) as I take them weekly.

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I was also recently diagnosed with ankylosing spondylitis and started Benepali in the middle of December. Have to say it's made a massive difference to my pain levels.

I get mine delivered by Healthcare at Home and their service has been great. They phone you to arrange a day to deliver and arrange a time slot (usually morning or afternoon) then text you usually the day before your delivery is due to give a more specific 2 hour time slot so you're not hanging around for hours. They will also deliver a sharps box to dispose of your used pens. Just make sure you don't play about with the lid and lock it before you even manage to get the first one in! A very sheepish phonecall to Healthcare at Home followed, and they quickly replaced it!

I didn't get a nurse visit to show me how to inject myself. It was all done at the hospital with a "dummy pen", no doubt to save money. The injections are so simple and easy to do. They do sting a bit. Make sure you take it out of the fridge 30 mins before injecting to minimise stinging.

At the moment I get a 4 week supply( I take weekly). Think this is just until they see if it agrees with me, then they'll give me a 3 month supply at a time. Keep us updated with how you get on with it.

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Thank you so much for the reply. I am looking forward to having a better quality of life. The only xpwrt who diagnosed me said my prognosis is worse because it is classed as late onset, so keen to stop further stiffness. My SI joint is already fused on the left, my ribs are fused to thoracic spine and neck is fusing - all in the space of 5yr. I am a nurse and so many subcutaneous injections a day, and would be happy to do without nurse visit, but my specialist says it's part of their package, and they are unlikely to let me administer without them completing their paperwork. 😏. Glad to hear you are doing well on it 😁

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Yes you normally get a letter & it does take 3/4 wks. Then they ring with a curteousy call to say the meds will be delivered then they ring to make arrangements to come out to go thro 1st injection. This has all recently happened to me even tho I sat thro 1hr 30mins "talk" at the hospital (29th Dec) already (me expecting the 1st injection there & then) only to be told they have to come out to your home. However I still havent started as I was waiting for a scan on my stomach & they wont begin until I had results (which are all ok) now I have developed a cough with a slight viral infection (taking 5day antibiotics) so this has delayed it again. They wont do it unless you are 100% healthy which is daft in itself. So hopefully I will start nxt wk which will be 6th Feb.

Good luck.

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Im a few weeks behind you, ive just had the talk at the hospital. I'm awaiting the call for them to come to my home. I'm in agony as my blood test showed latent tb ( I work at a hospital in very close contact to patients) and have had to take antibiotics for 3 months before I could start the process to get on them. Praying they will work

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I do empathise, I work as a nurse on the frontline in an acute ward. I trained in Glasgow and nursed many TB patients. I was paranoid mines would show latent tb, but purprisingly clear. Fingers crossed you start soon. Take care 😁

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I hope we both get great results, and our quality of life greatly improved,best wishes

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Hi

I started Anti-tnf enbrel a year ago for AS and it's made a massive difference to me. I am a Detective in the police and before enbrel honestly thought I was heading towards having no choice but to leave because of the pain in my sacroiliac joint, leg and lower back and the relentless fatigue this brought, restricted duties couldn't continue and there was no way I could perform my role effectively due to the amounts of morphine and tramadol etc I was taking to try to manage the pain

A year on although I do still feel wiped out after lots of extra hours at work I can honestly say that enbrel has given me my life back. I still use my time off to try to catch up rest wise as otherwise it still can knock me sideways if I don't listen to my body when it tells me I have done enough. Pain wise no strong Meds for about 10 months now which in it's self makes me feel much much livelier.

Good luck I really hope u have a similar experience 😊

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Thank you it is lovely to hear a positive experience. I work as a ward sister on a busy demanding ward. It is heavy, and most days I click 5 mile on my pedometer. I usually only do 2 long days together (12.5hr shifts), then a day or so to rest. My OH have been very supportive. I have quite a lot of fusion, so lack flexibility. My Rheumy thinks I will get some of this back with Benepali 😁. Best Wishes

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Hi Maureen - hope this email finds you well. Just wanted to find out how you are fairing a year on from Enbrel? Best wishes - Hessie

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On the whole I’m doing well, stiffness and pain are much less these days. I did have a rough time from Nov - March picking up infections which meant I missed 1/2 of my Benepali and Methotrexate. It’s time like that you realise how well it works. Don’t let this worry you I work on the front line Nhs.

I suffered a severe stroke 2 weeks ago, despite having no risk factors, so they are putting it down to my Ankylosing Spondylitis. I’m fortunate it was witnessed by my husband so had the treatment to dissolve the clot, and am nearly back to normal. With everything that has gone on have made the decision to apply for ill heath retirement. Hope Benepali is still working for you. Take care x

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Hi Maureen - so kind of you to update. I sincerely hope you are well on the road to recovery. That sure was scary. Are you still on the biologics? You sound such a strong and positive lady. It’s kind of working not 100 percent but don’t want to take the mtx on top of all this. Wishing you the best of health. Best wishes. X

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