Change of diet because of being prescribed a biologic

General
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I wouldn’t stress too much about the cooler problem till you’ve had a chat to the manufacturers help line. Whilst it’s best to keep it cooled all the time, some of them (certainly Humira and Enbrel), will generally specify a time for which they should remain active after they were no longer refrigerated. Last time I checked for Enbrel (6 years ago), they told me two weeks. When I checked for Humira about 5 years ago, they said 4 weeks - as long as it doesn’t reach high temperatures (they told me not > 30 deg C).

Certainly, even in hot weather, the inside of your fridge shouldn’t lose more than about a degree if you are not there to open it. The only thing I nearly did to my Enbrel was freeze it - was leaving it at the back of the fridge, so it was out of the family’s way, then turned down the temp in the fridge on a hot day to cool some drinks… luckily it was at the top of the fridge, and I noticed the frozen lettuce at the bottom back before the top of the fridge got too cold :joy::joy:

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Oh, and when I had a misfire with my Enbrel on a different occasion, I called the help line and they sent me some replacement for free - so if you (or anyone else reading this) does have any problems, make sure you contact them to see if they can help.

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Thanks @Jen75. I regularly find things frozen in my fridge. Lettuce and strawberries especially. Guess I’m going to have to have it less cold. Sigh. I’m a cold things lover. It’s around 30c here presently too and there’s no air conditioning either. I don’t think we’re ‘allowed’ to call manufacturers’ helplines in the UK, it’s all through this company that I’m presently whinging about. However I have heard better things about that side of its service. And of course the whole thing is free anyhow, thanks wholeheartedly to the NHS too.

Honestly my whole beef is the 5 week delay from prescription (when present meds haven’t really worked for around 10 weeks) and now another 10 days for the nurse visit etc etc. That’s a whole lot of weeks of being fairly miserable and bordering now (it seems) on having a little ‘roid rage’ issue as a result, especially when I was approved, funded and good to go on around 10 June. I’ve just been waiting since. And each day I chase and each day it seems more obstacles are put in the way. It’s so needlessly inefficient and the NHS pays this company to do this. I’ll get over myself. But thanks all of you for listening and letting me just vent off. My partner is so grateful I’m on this forum as it means he hears less of all this too.

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I second what Jen says, don’t sweat the cooling issue. I bought a Lock’n’Lock plastic container that fits a couple of packs of meds, when they arrive I wrap them in a bit of the bubble wrap they came in, put them in the container on the middle shelf of the fridge and forget about them. We’ve had power cuts lasting 9 plus hours and they have stayed plenty cool enough.

When the time comes for travelling there are lots of small insulated bags around - diabetics use them all the time for insulin - and they come with tiny ice packs which tuck in a padded section of the bag so as to protect the meds from direct contact with the ice pack. It’s not a big deal and again, as Jen mentioned there is a window with all the bio’s when they still remain viable.

But you take the words right out my mouth about HAH. My beef the last two deliveries is arranging with them a day and time (morning) only to get the damn pre-recorded phone call the night before to tell me they are coming in the afternoon. A royal screw-up of two days plans! And then on one of the deliveries they delivered double doses. Not impressive.

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I am smiling now as I really have had such a moan, haven’t I? Brilliant idea @Jules_G for the plastic container, I have several of several sizes and they’re so available to buy anyhow.

And yes I’m girding my loins for the screw ups on delivery times, I have heard such a lot of stories about that. Although @Sybil says she doesn’t get such screw ups in Kent and I’m in Kent. Let’s hope we’re in the same designated delivery area as sadly Kent is rather large!

I loathe all the delivery stuff issues we get nowadays though. Last summer when I was sitting here with a fractured pelvis I needed a new umbrella/parasol for over my table outside. I could get there on my walker. The company messed me up for over three weeks. I thought I would lose all reason especially as I couldn’t get out coherently to a shop to just damn well buy one! Hence I guess why I’m so tetchy already about HAH.

But all of you have been so great in just listening to me whinge away. Thank you so much.

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It’s a very bad punishment, very very very bad.

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Hi Poo, well, I had my first, nurse supervised, injection yesterday, yay! The delivery was as smooth as you like, evening delivery time, within the window. I had an issue with the nurse visit in the end, though, I got no eta the night before, started phoning HaH at 8 am, finally got a call back at 11ish to say they were struggling to get my visit filled and did I want to rearrange? I calmly advised that I can’t work from home very often, so NO! They then found me a lovely nurse who came all the way from Wales (to Somerset) by about 3pm. I was also thinking about doing it myself, but glad I didn’t, as she quite seriously sat with me for 30 minutes after with meds at the ready in case I went into anaphylactic shock! Anyway, I’m on my way now and so hoping it works. I really hope you get sorted soon :heart_decoration:

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Your post @a.laker28 made me smile. I haven’t updated this forum on my issues with HAH. I sort of felt I had taken up enough time with my issues and whinging of a lack of cogent risks being told to me about Benepali and/or biologics anyway.

So I think I left off where I was expecting HAH to deliver me my first lot of Benepali to last a month, last Friday. They didn’t. They re-arranged me for Monday. I got a text saying the delivery would be before 10am. Then got another that it would be from 11am to 1pm. It turned up at 4pm. The dog by then was desperate for a walk. And I was fuming. The delivery guy was in quite a state. He needed to use my loo and I gave him a cold drink. He told me (as I suspected anyway) that things need to change as regards their delivery system for my area anyway as it’s in a mess. He was sweet, kind and just exhausted.

I had anyway been on to HAH most of Monday. They were exceptionally idiotic and patronising frankly. I was deeply unimpressed.

As you know from the start, they told me no nurse was available in my area until 10 days after their delivery, which they had already held up by 3 weeks anyhow.

So I got to thinking. If their professional indemnity insurers allowed delivery of this rather expensive drug without a nurse to administer it for 10 whole days after the delivery, the likelihood of me dropping dead from just injecting it myself without a nurse simply had to be minimal. As otherwise they simply would have been prevented from doing such a delivery anyway. And given I wasn’t appropriately risk assessed for possible side effects (the subject heading of this thread) again the risk to me was or had to be just minimal. It simply had to be. Otherwise such a delivery, with the lack of an available nurse nonsense, would not be permitted.

So I read the instruction sheet which covered the length of my dining room table and thought ‘shucks this isn’t hard to do, is it?’ And glory be, I even had a video to watch if I wanted, I didn’t bother. My fingers couldn’t extract the chip thing to put it in my laptop anyway. Sigh.

At 7.30am the next morning, totally alone as my partner wasn’t turning up till 9am (he thankfully doesn’t live with me, most of the time, although he’s lovely anyhow), I executed the said injection. Given I knew he was turning up, he’d either find me dead (totally unlikely) or needing an ambulance, (very unlikely). So I sort of felt covered.

It was easier and a lot less painful than the mxt one I did on my own too. No nurse was ever offered for me for that one though. And in my mind now the effects of mxt on me were far, far worse than this one. I didn’t drop down dead. I didn’t get any injection site reaction. I didn’t feel weird an hour later as I did with mxt. I was just perfectly fine. I didn’t get a stuffy nose or feel in anyway different either.

What I can say now is that my hands feel a bit better. (I might now be able, if I could be bothered, extract the chip thing to put in my computer to see the video on how to inject myself. I’m so not bothered though.) My feet though aren’t better yet, not at all. I’m hoping by next Tuesday or the Tuesday after, maybe my feet will feel just a bit better then. Who knows?

Here’s hoping for both you and me though, it just works. As for HAH I’m so looking forward to dealing with them again for my next delivery at the end of the month. My guess is they aren’t looking forward to dealing with me. Their delivery driver might be, though. If he’s the same one.

And now I’ve just thought, as no nurse visit for me was organised by them, given it’s Friday now and my delivery was Monday, if they actually were concerned this drug might of killed me, wouldn’t you think, they might have called me by now? Just to see???

Sorry I’m so sarcastic as to my experience. But truly, it is funny, isn’t it?

But hand on heart I so hope it just works for just both of us. I’m presently hopeful quite honestly. Hope you are too. :two_hearts:

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Well, that’s really made me smile! I love your risk assessment and back up plan, so calculated!

The problem with HaH isn’t so good, though. My delivery was between 6 and 9pm, got a text the night before to say 6-8 slot and turned up at 6.10pm, very good. Shame about the nurse, but as I’d never injected before, I needed to wait. Much easier than I thought, though.

I guess a complaint to HaH may be in order for you, they are a private company, so may get you somewhere? They do sound quite stretched, my nurse said they do all sorts including home chemotherapy and she covers a massive area.

I so hope it works for us, keep me updated. I’ve not noticed any change yet, but my symptoms sound less severe than yours, so may be more subtle. :heart_decoration:

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I started off being really careful with what I ate when I started on biologics a few years back because of the scary sounding side effects.

I used to love a medium rare steak, pate, runny yolks in a fried egg etc and I stopped for a few years. Then I read a fairly interesting article (can’t remember the link sadly) which classified how dangerous different foods really were for food poisoning etc.

Sensible stuff like.

In a developed country, if eggs are from hens vaccinated against salmonella, then a runny egg is unlikely to cause you any problem. In the UK hens are vaccinated and actually they’ve recently changed the guidelines for pregant women and other vulnerable groups to say its ok to have runny eggs :slight_smile:

Steaks again, were suggested as probably being ok as any bacteria would be on the outside and would likely be killed by cooking, even if the middle was a bit more medium as its a solid chunk of meat so bacteria on the outside.

Ground meat however, like burgers could have bacteria all the way through so can’t have a medium cooked burger or undercooked mince etc.

So I relaxed a little and now eat medium steaks rather than medium rare, eat my eggs runny and a little soft cheese like Brie (nothing blue) now and again and i’ve not had any issues.

I guess, speak to your doctor about it if you’re worried, mine didn’t seem overly worried, just like I said, suggested I use common sense and if something didn’t seem safe to me, don’t eat it.

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Thanks @j0nn13. Three weeks in I’ve not had any issues whatsoever other than feeling better. Which is so lovely.

My whole point about raising this post was the utter lack of any mention of food poisoning issues other than in the leaflet. And the fact that’s it rare most available ordinary foodstuffs unless you’ve not kept them correctly actually do cause food poisoning anyhow especially here in the UK. So my whole point was why have it mentioned in a leaflet without anyone thinking it was serious enough to actually mention and discuss properly.

I’ve still been eating rare steak, blue cheese and runny eggs and so it’s fine.

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Hi poo, how are you getting on with the Benepali? Had my fourth injection this week and starting to maybe feel a little better, though nothing dramatic yet. No side effects either, though :grinning:
Andrea x

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You must be physic as I was just thinking about you earlier. Yes I’ve done 4 too. It’s working certainly. People have remarked that I’m walking a lot better and certainly I’'ve far less pain. And no side effects either. It might work even better if it wasn’t quite so hot here in Kent. So roll on less intense heat. I do however feel like I’m putting on weight though, although eating less.

Glad you think you’re feeling a little better. Lets hope you soon feel lots better. And that reminds me to get a blood test done now it’s 4 weeks. :grinning: x

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That’s really good news, I think my changes are more subtle so far, if at all, but still really hopeful. I’m still losing weight (deliberately) though in the hot weather exercising less, so maybe a bit slower.

Got my blood test booked. And still eating cheese :stuck_out_tongue_winking_eye:

Will keep you updated x

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I think of you every time I eat cheese!:rofl:

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Having had cheese for lunch, thought I’d update you. Benepali still not working 6 weeks in :disappointed:, so have given up a bit of hope now. And my physio spotted my wrist that’s been swollen for many months and is going to inject it in a couple of weeks :open_mouth:
How are you getting on? Still making progress I hope :heart_decoration:

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Good to hear from you, though not so good you don’t think it’s working. I was told some people are slow responders but usually respond around the 12 week mark. So don’t give up too much hope.

I was doing fine until I had to get a tooth out so had to skip a week and I’m feeling it. So I went back on it last week and can’t wait till tomorrow’s injection as I need it to do its stuff again as it hasn’t yet. Fingers crossed for both of us.

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Definitely fingers crossed, though I’m also prepared to try another one - a friend who also has PsA recommended Humira, so may ask for that next. Anyway, got a festival this weekend, so will dose up on painkillers and dance, dance, dance :dancer:… And eat cheese :grinning:

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I have enjoyed following your conversation Poo_therapy and a.laker28 as it gives me a feel for what might be further down the line. The idea of finding a drug that really helps is quite new to me of late. Mind you, the comments poo made about MTX were a bit scary though as I start it on Wednesday. My stomach has been so much improved since stopping the sulfasalazine, a part of me wants to run away from it all.
On the subject of diet, though, I would seriously miss runny eggs. I breed my own ducks and I have always found a soft-boiled duck egg to be a great delicacy (I know, I have rather simple tastes). And the ducks are not vaccinated of course as I would never subject my girls to that.
And the honey. Raw honey such as I took from my bees last week. Is there anything better? Not for me anyway although diabetes has rained on my bonfire a bit there. I seriously doubt something so naturally antiseptic as honey could be problem for anyone. I know there is a type of bee dysentry which means we have to warn on the jars against giving it to babies, but it is an extreme precaution. Humans are naturally resistant and it would need some poor hygiene for it to be in there in the first place.
Still, I guess getting it wrong can have big consequences on these drugs.

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Loving the thought of eating cheese and dancing. Have a great time!