Thanks for the heads up Laura - though eek! Our last two outbreaks of listeria in Australia have been related to pre-packed salad leaves, and rockmelon. So for me I guess it’s a risk I’m mostly just going to have to accept. Having said that, unpasteurised products have not been allowed here for years - they were discussing it a year or so ago, but I haven’t noticed any changes on the shelf yet.
Hi there,
I’m starting etanercept too but Benepali not enbrel. The advice was in the hospital (rather than arthritis UK) leaflet but never once mentioned by either the rheumy or nurse! Which as you can see got on my goat for several reasons:smirk: But the shingles/chickenpox issue was certainly gone into in some incredible detail. Along with TB issues and my love of all things rural caused some initial consternation. But not my love of cheese or pates etc.
There’s something in the back of my mind that links herpes simplex virus to chickenpox/shingles one as in they’re similar. I’d be asking about that if I were you as we certainly know on biologics the chicken pox/shingles issues can be quite something.
And I certainly wasn’t told to wear a mask or beware of crowds!
I’m starting Benepali too, think it’s a cheaper version so NHS can afford it. I did mention cold sores to my rheumy nurse and she said we’ll just keep an eye on it. I had a “T spot” blood test this week to check for latent TB, then hoping I can start treatment in the next couple of weeks through “health care at home” (so not even a prescription charge). Actually looking forward to it in a weird way, just want to get on top of this illness and dance at a festival at the end of August!
Avoiding crowds is not a sustainable option, nor is it one that has ever been recommended to me by any medical source in writing or in person. I need at least another 20 years to get through my ‘to do’ list and I have no intention of spending that time indoors or wandering lonely as a cloud.
After being referred to the Kent TB team after exposure, they told me that, in their experience, people on biologic therapies were no more likely to contract TB than anyone else, which really brought home to me how solid my immune system is likely to be. (I know there’s a risk of latent TB becoming active while on bios but that’s a different issue and I guess that’s why we have chest x-rays before starting the treatment).
I reckon you should contact the clinic and ask if there are or are not some specific areas in which you should definitely exercise caution. And then banish fear 'cos life’s too short.
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So with you on all fronts @a.laker28. It sounds like we’re marching the same path together. I’m waiting for the call from ‘health care at home’ too. And I’m looking forward to starting it too for all the same reasons, although I had forgotten about how lovely it is to dance. Thanks for reminding me about that one!
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I’m so with you on fronts Sybil. And I too have no intention of avoiding much. And certainly for work, given commuting issues, I’ve no ability of avoiding crowds!
My whole point of raising this was actually just the lack of clarity given to patients on some issues which seemed silly to me. And me being me was just trying to work out what was actually essential rather than what was overly ridiculous!
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The general advice is good to know, as I’m a health care professional, so I will need to avoid people with active nasty infections (not that I always know), but the rest of it I’ll take with a pinch of salt. Just had some fab cheese, actually! Life’s way too short not to eat cheese!
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I can tell you, too, I’m with sick grandkids a lot. With 10 grandkids I don’t think there was one week this winter when someone didn’t have a bad cold or worse! A few times they had unexplainable crud—one having a 106 degree fever. I can’t avoid those kids so I just cross my fingers. All I ever get is a slightly stuffy nose or mild sore throat. I do remember, tho, the first winter I was on Enbrel I had a 6-week head cold and then chest cold back to back. But, that again, wasn’t bad enough to miss work. Did I worry? You bet—but it really wasn’t worth getting stressed over.
Hi poo, had my Benepali delivered yesterday, first injection with the nurse next Thursday, strangely looking forward to it!
Any news on yours yet?
Hi @a.laker28
I’ve been having stern conversations this last week with both HAH and the hospital as I seriously can’t understand why it takes 5 weeks from the prescription of the drug to actually getting it, when it was known 3 days after the prescription I was clear blood test and other test wise to start. And since the only reason I’m being prescribed it is because we know my present meds have stopped working at all now and I’m back on pred.
Presently I’m having problems with HAH’s nurse availability. Supposed to be getting the delivery later today but was told I’d have to wait till a week on Monday for the nurse. So I’ve queried the necessity of the nurse, since I didn’t need one to inject myself with mxt last year and I truly can’t see this being much different.
I honestly can’t see the point of waiting for her (or I guess him) for that long when I’m desperate to just get going on it and when it will be just sitting in my fridge looking at me for around 10 days. It seems just wholly ridiculous to me. In fact the whole process has been frustrating, wearing and just silly. And of course the pred issue hasn’t helped either since it rids me of much patience for lots of things, nonsense bureaucracy especially. And further I can’t understand why they don’t dovetail the first delivery with the nurse appropriately either, if they’re so hell bent on supplying one. I assume it comes with instructions anyhow like the mxt autoinjector did. My thoughts are the sooner I start the sooner I have the chance to see if it works and I’m a bit done now wasting days unable to do what I want to do anyway.
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Hey, Poo it’s frustrating for sure. My HAH nurse was a “he” way back when and actually very nice and very reassuring about lots of things.
I’d also injected mtx so knew what I was doing … although back then when the Humira arrived it was an autoinjector when I’d requested a syringe so I wasn’t totally unhappy he was there to oversee my first injection.
Unfortunately the one thing I’ve had to develop by the mountain these past six years or so is almost limitless patience. Nothing and no-one moves swiftly enough when I’m feeling rough.
And, sadly, be prepepared for more frustrations with HAH because I have never before come across an organisation that can turn something so simple into something complicated. And just when you think you’ve got it square with them they still manage to muck it up. So my top tip for future home deliveries … double, triple, quadruple check the time and date they have booked your delivery in for BEFORE you let them end the phone call.
I hear you Poo. But just to add, although I know H&H can be a pain, I’ve had excellent service from them over the last two years here in Kent so that bodes well for you once you start getting deliveries.
My delivery wasn’t too slow, actually, though when you’re waiting it still feels too long! Had my delivery on Wednesday, 2 weeks after my t-spot test, nurse visit next Thursday, 8 days later, though I could have had it earlier if it weren’t for work commitments. So, seems better in my area (Somerset). You must be tempted to have a go yourself as you’ve injected before? It does come with instructions, swabs, sharps box etc. I’ve not injected before, so guess I’ll wait! Just so hoping it works 
Hope you get going with it soon xx
@Sybil, @Jules_G and @a.laker28
Thanks all of you. Given I had to put my remaining cat to sleep this week, and I do exceptionally badly in this level of heat too topping 30c inland in Kent, and I’m on pred, I’m sort of out of any reserves of patience presently.
The prescribing nurse in Bath initially messed up because the prescription said once every two weeks instead of once a week. First time Bath messed up for me too. It seems HAH and hospitals can only communicate over prescriptions by using Royal Mail. So that took a whole 10 days to correct. So you can imagine what I was like yesterday when HAH told me I had to wait another 10 days for the nurse to visit. HAH is a profit making enterprise, it seems, since it also works the private sector, so I was fairly to the point. Basically I told them if a nurse was required, then the nurse should make the first delivery - end of.
However all this is stupidly incensing me so I’ll have a look at it all and if I feel I can do it, I’ll do it and then just cancel the nurse rather than get into another argument with them.
Let me know if any of this isn’t right. I should take it out of the fridge for 30 minutes before doing it, and stomach fat is less painful than thigh fat (although I’ve an abundance of both!). Any other tips?
Poo, I get my humira injections out of the fridge at least 30 minutes before using them. They are fine at room temperature for at least 12 hours I believe, maybe longer, and I expect it’s the same for Benepali. In this heat though, I’m a little cautious and wouldn’t leave it longer than a couple of hours. I then tuck the syringe under my armpit for about 15 minutes. That’s not necessary at all, but I believe getting it up to body temperature contributes to making the injection potentially painless. And yes, most people seem to agree that tummy fat offers a lot less resistance than thighs etc.
The injection is ridiculously easy once you get used to it. However I would be surprised if you’re allowed to do the first one yourself. Might happen, but I think they have a duty of care … (don’t laugh). The nurse who showed me how to do it stayed for an hour afterwards to make sure I didn’t have a reaction of any kind.
Thanks Sybil.
Following on from my previous comment, I again re-read the leaflet that should come with the benepali - thank god for the internet so these things are downloadable (as no one has thought to provide it to me yet) and thought about it some more. As of course there is a risk of an allergic reaction, hence the nurse idea isn’t so stupid after all. And of course I’ve no notion if I might be one of the very, very few that do get an allergic reaction.
Last night in my very fraught call with HAH, I did say I could just bring it to my GP’s surgery and do it there, or even my local chemist and do it there. He didn’t really have an answer for that one as I guess almost every new patient says the same as me - which is - for the first delivery why isn’t it the nurse who makes that delivery? Problem solved in an instant. Since he or she is driving a car obviously, I’m sure they can also drive a small refrigerated van anyhow.
I’m laughing at the ‘not allowed’ bit though. It begs the question of why they want it sitting in my fridge for 10 days before the nurse can get here, if I’m ‘not allowed’ to do the first one myself. What are they going to do? Lock my fridge??? Thank you for that, I so needed the giggle. And also if I break the rules, what’s their punishment? That bit has made me giggle even more.
Presently and more seriously though, I’m trying hard to reign in my natural and further pred induced impatience and general intolerance of just all this nonsense. I get the duty of care, I get it costs a lot and I’m getting it for free thanks to our NHS. I get all of that and truly do feel hugely privileged to be able to benefit from all that. But I really don’t get the rules of an independent company who’s business model appears to be more about workflow systems rather than patient convenience. What’s this nonsense that they can’t give you the two hour window until the night before? First they give you the day, then they text the next day or the day after to give you a 4 hour window and text the night before to give you a 2 hour window. I need to know the 2 hour window from the off. I like to live a life and changing plans three times instead of once seems silly to me as no doubt I’d choose to be doing stuff always at the wrong time.
I get the dog’s food delivered as he’s on a semi raw diet and it comes frozen. I pick the day and the two hour slot for delivery. The night before I get an email telling me which half hour slot within that two hour slot will my delivery arrive. If a dog food producer can do that with frozen dog food surely a medical delivery operation can do it with meds that need to be refrigerated? It’s like it’s in the dark ages on end user convenience protocols. Gosh I am moaning a lot aren’t I? I’ll shut up now, I promise.
But I’m just so frigging frustrated… my foot has blown up today, the toes on my other foot hurt and that Achilles tendon. My hips ache so much and I’m wiped out tired. At least if I can actually try Benepali I can start finding out if it will work for me. My present meds slowed down in mid April, stopped working altogether in mid June and I’m just fed up waiting to be on anything with a chance of working. And I’m so fed up with the lack of urgency in helping me too.
Graned, I work in America, but the pharmacy systems can’t be all that different, can they? I’ve also worked for a prescribtion benefits management company for 15 years so I might have some insight for you.
What you’re experiencing is the difference in availability of the actual product. Dog food is dog food is dog food and the company is able to basically rest assured they will have product to delivery to when and where they say they will.
Prescription meds? Not so much. Anything “fit for human consumption” has many more moving parts than animal feed (even though we treat our dogs like children). This is even more true of a biologic and of injectables. The things that go on behind the scenes can be unbelievable, which is one of the reasons they’re behind the scenes. There are also checks-and-balances every step of the way for meds that have to be chilled and there’s always the possibility of a check being failed.
Now, I’m not sure why they’re requiring a 2 hour window for delivery. I’m assuming it’s because of the expense of the med and they want an adult available to sign for it. It’s definitely not because of packaging, those meds should be packaged to travel several days without refridgeration. Well, at least in America they are.
Speaking of packaging, as I sit here starting to sweat in almost-100-degree heat and 100 percent humidity my area is currently suffering under – do you have a cooler? Do you have ice packs in your freezer? What if you loose power? What if your 'fridge goes on the fritz? You need to have a back up plan for your meds that require refridgeration! If benpali works for you you’re going to definitely want to have a small cooler on stand by just incase something utterly bizarre happens and you lose refridgeration while you have an active dose chilling.
azurelle
Thanks but I don’t think it’s an drug availability issue. The drug is delivered by this company all over the UK every day, possibly excluding weekends. The days of the week for delivery to my area are 3 - Monday Wednesday and Thursday. It’s the only company to deliver the drug so it has an monopoly. There’s no other way of getting this drug except through this company. It doesn’t however produce or manufacture the drug, or fill the autoinjector, that’s done by the manufacturer’s agent here, which interestingly isn’t that far away from where I live.
So the whole delivery issue I’m whinging about is the process this company chooses for delivery. There’s a whole science of delivery called logistics. These are pre-filled autoinjectors as that’s all I’ve been offered. This company is simply given the product ready made up. Its job here is simply to deliver the drug to me with or without a nurse. Its protocol is to make sure I’ve a nurse available using it for the first time. I’m fine with that provided both arrive pretty much together, not 10 whole days apart. I’m fine with having to be here to physically sign for the delivery and in the first instance it has to be me and not someone I’ve nominated. I’m fine with that too.
What’s irritating me is their lack of any cogency of their logistics. I don’t need first to make sure I’m at home for a whole day of the nominated day, only to be told 2 or 3 days before that intended day to only then be free for 4 hours of that and then later the night before to be told I only need to be free for 2 hours. Logistics nowadays does have ways of flowing the work through on a 2 hour only delivery slot from the off, without wasting their time or mine in such a convoluted and frankly outdated delivery process that might convenience them but only serves to irritate me. That’s why I compared it to the dog food delivery as that company’s grasp on modern day logistics seems far superior.
It’s nothing to do with the product they’re delivering, it’s simply to do with the logistic process they’re using for delivery. The dog food has to remain frozen throughout the delivery process, the drug needs to be chilled throughout the delivery, not much difference in my view. However you’re now saying the drug doesn’t even need chilling for delivery which makes their process even more ridiculous consequently.
Never thought about the cooler issue though. I know there’s travel coolers you can buy (which I’ll need for an 8 to 10 hour drive on our next holiday) but if I’m in London at work for the day and we have a power cut there’s sweet nothing I can do about that anyway. As there would be no one here to do anything about it and I wouldn’t know we had a power cut until I got home. Same difference if I had power cut overnight, I wouldn’t know (most probably) until I woke up in the morning. Also it seems there’s a max cool temp it needs to be kept at too. Might not a ice pack risk of keeping too cold? I was given all sorts of directions as to where precisely I needed to keep it in my fridge, middle shelf not near the sides of back in case it got frozen.
Gosh so much to think about… and I really wish I could start tapering the pred more. As obviously I’m a little too over-excited and too overly irritated with this delivery company. @Jules_G you’re so right this company does appear to be an organisation that likes things to be as complicated as possible. Sigh…