NRAS
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Biologics Nurse

I posted on here, somewhere about my issues with the various meds, especially Benepali. But I’ve just thought of something else & cant locate my post😒. The clinic here contracts out the benepali drug to another company, so make irritating arrangements to deliver it to you, a very involved phone call first, to quiz you on all sorts of things. Then a nurse comes to your home (which I wasnt happy with) for the first injection & though it was fine, she then said she wpuld come for the second one🤨. What I thought was a bit odd, maybe some nurses on here could comment. Considering I’d only had one injection of this Benepali, the nurse asked if I’d notice any improvement, I said I didnt see that was likely & I hadnt noticed much change.

She then asked if I felt there was or would be improvements in my mobility. I thought this was a strange question, seeing as I still have Fibromyalgia/CFS and Osteoarthritis?? Do they not have relevant notes on me & if not, why not. Any thoughts on this please?

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You did a reply to another post, so to find it you need to search on your replies.

Anyway, there are a lot of hoops to jump through to get Benepali as it costs the NHS around £9,000 a year for you and is not given to everyone. So the process can feel a bit complicated and delivery a nuisance. Once you get into a routine it should be easier for you. And as far as I know the nurses have to ask these standard questions - and some people have had nearly instantaneous positive responses to biologics (I'm not a nurse by the way). Many people have found them to be life changers with quite incredible improvements, so if you've only just started you might find things change v soon and you get your quality of life back.

But if you've not tolerated the standard drugs then to be blunt you have a choice between uncontrolled RA and risk of permanent joint damage, and trying these drugs. Quite often people do find many side effects wear off. And as for the infections, were you advised to pay attention to lots of hand washing and avoid people coughing in your face?

(Just seen post from JayneN just after yours where she says she's feeling an I prove net after 2 weeks...it does happen!)

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Is this the reply you're looking for, last on the post? healthunlocked.com/nras/pos...

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Hi, I started benepali 4 weeks ago after too many side effects with everything else. 2 visits from nurses and yes it does seem a bit over the top, but as this is an expensive drug and stressing the problems with infections is so important, I was happy to have the help. I was told 8 to 12 weeks and I should really notice the difference. No side effects so far, so I'm feeling optimistic. Good luck, I hope it all works for you.

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I agree with helixhelix. I am on Cimzia and I thought it was quite reasonable that the initial injections were supervised by a nurse considering the cost. I was offered a second visit but we agreed that was not necessary in my case, (as an ex- farmer I was used to handling needles) but got a follow up phone call on the day of the second injection.

The delivery is contracted out to ensure safe "cold chain" system. As biologics all need to be kept under refrigeration at all times, this is the only way to keep your medication safe and effective. In Scotland delivery is contracted to Lloydspharmacy Clinical Homecare who do good job.

I hope that Benepali works for you and feel that the hassle is worthwhile.

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It sounds like the admin of it ( probably by Healthcare at Home ) is much the same as most other Benepali user will have seen, me included. I had read a lot of bad comments about them but I have only ever found the service efficient and clear. For me, the last two deliveries have been better as they now ( in my area anyway) deliver 12 weeks worth rather than 8 so less planning of being in for deliveries. They also now book the next two delivery dates at the same time. No waiting for them to call you to arrange ever time! As far as your experience with your HAH nurse... I am sorry and it sounds like she may have been a little over zealous and maybe a little softer approach would of been better for you. Mine was marvellous, maybe as her mother has RA so she knew exactly the daily problems it brings and didn’t ask inappropriate questions. Mine was very patient and I said I didn’t need her for the second injection which she accepted but asked me to call if I changed my mind! The only problem I have ever found is when I try to get through to HRH as the phone line is always busy. Therefore, I pre-plan and call welll ahead of time... often calling at times I think would be less busy. Saying that, where they book next two deliveries in one go I haven’t had to call them for ages! I view the ability of being allowed Benepali through the NHS as a great privilege and I couldn’t bear to think how I would be physically and probably mentally if I was declined the chance to see improvement from this drug! I hope that when you start seeing improvement in your RA ( which I appreciate may less obvious to detect due to your other conditions) you will feel more positive about the drug and the necessary admin involved. Thinking of you.

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I started on benapali and noticed a great improvement in a few days. I too have Fibromyalgia and that seemed to improve as well. I still suffer but with not half as many flares now.

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I was asked if I had noticed any improvement when the nurse came the second time. I told her I hadn't. Then my rheumatologist told me it can take 6 months to notice. I didn't respond to it anyway and am now on Humira but not sure I am responding to that either.

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