Just got through all the consent forms etc to get this moving. It seems to take weeks in the UK. Anyway with it was a blurp from the service from my hospital where my rheumy is based. And there’s a section about food advice. It says no mold ripened soft cheeses such as brie or soft blue cheeses. Only thoroughly hard whites and yolks of eggs. No raw or unpasturised milk. No pate at all. No raw or undercooked meat or fish.
Now my fridge always has lots of cheese and lots of pate. And I love a runny egg. My steak must be
Sorry something is going wrong with my computer and that got posted too soon.
I only eat rare steak as in blue. I love a bit of sushi and I exist on cheese and pate. Apparently it’s to do with a listeria risk.
However I’ve never heard of any of you talking about such excessive changes to one’s diet just because you’re taking a biologic.
So views please. I read it and was immediately brought back to 1980’s when a stupid MP here said all eggs should be banned from human consumption! In otherwords I sighed and am wholly prepared to ignore all of that food advice. But if I really shouldn’t ignore it - please let me know.
Clearly I don’t read those inserts. I’m a vegetarian, but I love brie! I’ve eaten raw cookie dough, etc. These days the greens have been a bigger threat in the states than anything else.
In other words, I haven’t changed my diet in any way.
Ok, ummmm, the only time I got that advice was pre-PSA, when I was pregnant (listeria being highly toxic to feotuses - but somehow my daughter survived sneaky sushi and soft cheese😁).
My Rheumy, who is so incredibly conservative, and tried to scare the bejesus out of me so I wouldn’t take biologics (not an exaggeration), never mentioned raw eggs, cheese, uncooked fish, or listeria. Way back when I first started, there was something in the first inserts about unpasteurised honey and milk (hard to get in aus). By the time I had the chance for raw honey, I was so used to it not causing a problem, I ate it without thinking - no problem.
As a good patient, when I first started Humira, I read the insert thoroughly- I don’t remember anything being mentioned. I started Cimzia a couple of months ago, and just double checked it (all 60 + pages) and no mention. I wouldn’t recommend you go against your rheumys or manufacturers advice, but perhaps you could check their non-uk websites to see if it’s a UK thing?
It’s allegedly taken from the NHS food poisoning advice ‘page’. It feels like a health and safety exec in this hospital in particular decided it must be included, rather than anything else. Incidentally it also mentions no vegetarian pates either as they can contain listeria too. Not 100% sure if a vegetarian pate would actually in truth. I guess it would depend how it was made.
When I read it, I thought it was a mistake and should have been put in a leaflet for newly pregnant women! And aged 56 (and post menopausal) I don’t think it’s likely I’ll be one of those.
We all know all sorts of infections whilst on biologics can have problems. And all sorts of infections can have problems when you have an insane immune system like we have in any event.
Neither the very long telephone interview with the biologic nurse mentioned it and neither did my rheumatologist. I am now though well versed in how the chicken pox/shingles virus operates. And how antibiotics simply can’t do their thing with a biologic etc etc.
I think I’ll go with my gut (pun very much intended) and pretty much ignore it.
I heard somewhere that Humira knocks out the part of the immune system that tackles Listeria. However I seem to have tactically forgotten that as I very much like to eat whatever takes my fancy. Thinking back … also remember persuasive warnings about eating un-rinsed raw veg e.g. lettuce etc.
I am cautious about raw eggs and unpasteurised milk & cheese, though probably just because there were warnings way back that wormed their way into my mind. I have become a little more stringent about food hygiene in general e.g. keeping raw meat separate from other foods, scrubbing chopping boards etc.
I’m in the states and I’ve never gotten any advice about what not to eat…I don’t remember reading it in the info leaflet that came with Enbrel, either. But, either way, I don’t eat anything raw, rare or runny that can be cooked well done!
For as long as I can remember I’ve had a fear of throwing up (not quite a phobia anymore) so I’m fairly cautious about what I eat. I’ve never had food poisoning and hope I never do.
Ask your doctor about checking your white blood cells occasionally. Mine are checked at least every six months. I would think that if your WBCs are normal your immune system is working fine you really shouldn’t need to be too concerned about eating those things. Aside from that, I’d be inclined to err on the side of caution and do as the doctor advises (usually) just to be safe…
I should also pipe up that I had Salmonella whilst on Humira. I was in a 3rd world country in the middle of nowhere, took the first type of antibiotics (which don’t work for salmonella), after about 8 hours I was only getting worse, so I realised it was not garden variety food poisoning, took the second type and started improving about 12 hours after and fine within a couple of days. I only found out it was salmonella about two weeks later when I was back in Australia, because they were screening for everything (that time I had dengue, but they could still see the salmonella).
Anyway, the point of that missive was just that in my case at least, even if I get an infection, as long as I get on top of it quickly it doesn’t seem to go any worse for me than anyone else.
Interesting. I have something of a phobia of throwing up too. But I’m also an adventurous eater as well, or put it another way, the thought of eating a well done steak would make me wonder why on earth would someone do that, as it makes it for me just inedible. On food poisoning issues which thankfully rarely but rarely happens for me, I tend to wait it out. Sadly the only thing that scuppers that is a bad oyster.
In the midst of all my grumblings, which really is more about the fact no one mentioned all these diet changing issues when actually physcially talking to me about the holy grail that is biologics, I got asked when was the last time I ate steak. It turns out to be many months ago. However cheeses and pates - well they’re eaten weekly at least. And since I don’t drink milk, I eat a lot of cheese. And at one time I flirted quite seriously with becoming a cheese maker. Indeed I still day dream about that!
Haha, that’s how I feel about eating something that looks bloody! A really good tender cut of steak is still tender when well done–I’m not sure how tender it would be rare because I just don’t have the guts to try that–but, yes, most chefs are appalled at the request for a steak well done! A lot of the time they can’t bring themselves to cooking it to that point, which is very disappointing because then I have to give the pink middle part to my husband.
I think those of us who have seen any mention of being so careful have tended to forget about it. I had anyway. I went to Marrakesh just after starting Humira - lots of street food and those streets were not exactly ‘well-maintained’. 2 days in I gave up worrying.
Think that’s sensible Sybil. However I’m still aghast it covers two whole pages in this booklet and yet neither the nurse nor rheumy thought to mention it. At all. And that means for some people (I won’t be one of them) they’ve added yet more ‘can’t do’s’ to their lives given this disease when it’s obviously not important enough to mention coherently in the first place. It’s that bit that really annoys me.
I’ve canvassed several groups now and the result is the same, simply confusion over the issue, which considering most of us have to eat around three times a day is somehow quite astonishing. I’ll get off my soapbox now.
Hey everyone.
This is along the same lines. I was reading about diet changes to help avoid inflammation. One is refined sugar that’s been proven to cause it. Well I got some Splenda naturals the other day. It is mostly erthritol and some stevia leaf extract. I thought they’re natural plant sugars. Maybe I can use it. The next morning I put some in my coffee. Then started sneezing minutes after drinking a few sips. Like really sneezing but no itching or any other allergic reaction type things. I took a whole 25 mg benadryl and before it took effect, I was sneezing again like the first attack. And immediately my head was hurting something major. So no more of that stuff. I’m guessing I’m mildly allergic to it. Figures with all my other allergies a and sensitivities.
Does any of y’all use some other sweetener? Or know of any that I could try? Or should I just stick with regular cane sugar?
Speaking of the diet restrictions, I love some sushi! If I’d have to give it up, I just don’t know lol
Grandma J, I’m with you! Any amount of pink in my steak, literally makes me sick to my stomach. I can’t even watch my husband eat his medium rare. Just ugh, nasty.
In my personal view any sugar substitutes are even worse, even just the plant etc derived ones, not necessarily for PsA though, but for other things. I’d rather stick to ordinary sugar instead of them. My point about sugar and PsA though is that for me eating anything sugarly makes it worse, so instead of substituting sugar, I just eat far, far, far less of it. And that certainly helps my PsA.
Hey Poo. Thank you for responding.
Yes I think that’s what I’m going to be doing. Especially since I had the sneezing reaction to the stevia .
Thank you again.
I have not been warned in the US about foods to stay away from. HOWEVER, and this is a big, BIG, caveat: one of my friends with PsA who was on Humira ended up in the ICU with a brain infection from Listeria. She had eaten unpasteurized cheese, she told me. She did survive the infection but says that she has deficits now that she didn’t have before her hospitalization. Though I am taking Humira now, it was my friend’s experience that kept me away from the biologics for quite some time.
Gosh Laura that’s awful. And thank you so much for sharing this. It certainly makes me think again. The sad part is for me only the hospital booklet told me about listeria issues, no nurse or doctor did. And consequently if it wasn’t worth mentioning to me face to face why was it mentioned in the hospital (not pharma company stuff)? In otherwords I was struggling to know truly how important it was. I guess now it is important.
You are welcome. And, it is really, really odd that this risk is not mentioned in any of the Humira information that I receive monthly here in the US. Pages and pages of it! I dutifully look through them each month, just to see if something has changed. You are lucky that this risk was brought to your attention. I imagine the risk is rare, but who would want to be the person to whom it happened?
Hi poo, I’m in the UK and also just about to start biologics - etanercept - what are you starting, out of interest? I did notice there was advice about how to avoid food poisoning, but to be honest, haven’t bothered reading it and don’t intend to!. It was in the arthritis UK leaflet I was given that did mention shingles/chickenpox. Does anyone know if cold sores (I.e. herpes simplex virus) is a problem, cos I get loads.
Also interestingly, when I was just on ssz, but a large dose, I had a hospital admission which they think could have been viral encephalitis, which can be caused by the herpes virus - wonder if that could be linked?
