Off limit foods?: Has anyone ever been told not to have... - NRAS

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Off limit foods?

Haz58 profile image
54 Replies

Has anyone ever been told not to have certain foods like blue cheese when they are taking DMARDS or on Prednisolone? Hubby bought blue cheese and I love it but I saw online I'm not supposed to eat it. I'm on sulfasalazine and pred.

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Haz58 profile image
Haz58
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54 Replies
Deeb1764 profile image
Deeb1764

No never been told anything about foods on any of my meds.

Neonkittie17 profile image
Neonkittie17

Hi not entirely sure of current recommendations for the dmard tablets and foods to avoid. I was told about no unpasteurised cheeses, soft cheeses and steer clear of pate which I can’t stand anyhow, when I first went onto a biologic over 10 years ago. Also raw eggs in things like home made mayo or Caesar dressing aren’t recommended for the immunocompromised, and the idea of raw egg makes me queasy anyhow, but I do still have Brie and Camembert.

When my French friend couriered a large box of a dozen cheeses from Paris I had to secretly reject a couple as I knew two were very “raw” cheeses and a bit risky. (They arrived in a speedy refrigerated courier van (must have cost her a small fortune!) I only like one blue cheese as they tend to make my fillings taste like mega metal and I only tend to eat it at Christmas tbh. That’s M&S Blacksticks Blue. So I sometimes partake in a little Brie and Camembert and occasionally a bit of Blacksticks Blue. I’d ask your nurse if it is OK as you’re not on a biologic. 🧀🧀🧀🥖

helixhelix profile image
helixhelix in reply toNeonkittie17

what a shame, I’d have snaffled them all up!

bpeal1 profile image
bpeal1 in reply tohelixhelix

Me too!!

Neonkittie17 profile image
Neonkittie17 in reply tobpeal1

I’d have cheese, crackers and some grapes over a dessert any day. 😋

Neonkittie17 profile image
Neonkittie17 in reply tohelixhelix

😁😋 LOL there were just two I didn’t eat but the others were gorgeous. Yum. One of the loveliest gifts ever received. Lasted for ages.

Mmrr profile image
Mmrr in reply toNeonkittie17

And me, I love blue cheese.

Neonkittie17 profile image
Neonkittie17 in reply toMmrr

I’m not usually a fan if it but I love the M&S Blacksticks Blue.

Mmrr profile image
Mmrr in reply toNeonkittie17

Oh yes, it is very tasty.

Neonkittie17 profile image
Neonkittie17 in reply toMmrr

Mmmm indeed 😋

Blackwitch profile image
Blackwitch in reply toNeonkittie17

😱 Neonkittie17. You’re the only other person that I’ve ever heard say that blue cheese affects their fillings. It’s like eating a lump of tin foil. I’m glad it’s not just me. My husband loves Stilton and is always saying I should taste it again. My teeth ache even thinking about it. 🫣🤢 xx

Neonkittie17 profile image
Neonkittie17 in reply toBlackwitch

LOL 😝 it’s a horrid sensation, when the wires go on your fillings, isn’t it?! 😳😬 Makes mine jangle. The Blacksticks Blue doesn't do that to me though. xx

KittyJ profile image
KittyJ

No I’ve never been told to avoid certain foods for any of the drugs I’ve been on.

AgedCrone profile image
AgedCrone in reply toKittyJ

Me neither….Recently there have been articles saying smoked salmon & other smoked fish should be avoided……. if you remember it was discussed here, but nothing seemed to follow on with hoards succumbing to anything.

I think the answer is if you think a drug you are on might preclude certain foods … ask your Rheumy nurse….. and you will probably get one of those. “What are you talking about “looks!

Yes soft cheeses have gained a reputation…but I have never heard of a particular case where someone has been harmed. It’s probably a “cover my back” excuse

I know my Rheumatologist says….. eat what do you fancy!

Mmrr profile image
Mmrr in reply toAgedCrone

I eat a lot of smoked salmon...and blue cheese, not things that I am willing to give up.

Boxerlady profile image
Boxerlady

No, never been told that - I presumed that it was only with medications like biologicals that there might be a problem.

I love my blue cheese and pate 😋

Neonkittie17 profile image
Neonkittie17 in reply toBoxerlady

Yes I believe that it is only when on biologics they tell you this as I wasn't told when on Sulpha and Mtx.

Paula-C profile image
Paula-C

it's mtx and biologics that they recommend you don't eat certain foods. It's the same advice that's given to pregnant women. This is what it states in my mtx booklet, I was also told not to eat raw eggs and undercooked beef.

Advice on foods.
Garnacha profile image
Garnacha in reply toPaula-C

Was just going to reply it was mtx that I was told not to eat certain foods x

Mmrr profile image
Mmrr in reply toPaula-C

I wasn't told not to eat certain foods when on biologics. This is the first I've heard of it.

Hodc profile image
Hodc in reply toMmrr

Me neither. Now I'm worried

Mmrr profile image
Mmrr in reply toHodc

I'm just going to continue eating what I enjoy. The information about not eating certain foods is a British thing, the same as for pregnant women.

Haz58 profile image
Haz58

Thanks everyone! 😊 Blue cheese it is for me then 👏👏👏

Neonkittie17 profile image
Neonkittie17

I also recall a no to bean sprouts being mentioned.

helixhelix profile image
helixhelix in reply toNeonkittie17

things like bean sprouts are much more risky than well made cheeses! Always rinse extremely well because of e.coli!

Neonkittie17 profile image
Neonkittie17 in reply tohelixhelix

I agree. Yes that’s what my nurse said re beqnsprouts not being washed properly being more risk than soft cheeses. (I’d not be bothered if I never ate another beansprout! They taste very bitter to me.) Everything fruit/salad/veg gets washed/rubbed/rinsed before I cook/use it. Not to do with Covid as I’ve always rinsed everything well (except mushrooms which get a wipe. )

helixhelix profile image
helixhelix

i live in France and eat unpasteurised cheese, raw egss, pâtés and blue cheeses without any concerns - as long as it’s fresh and from a reputable supplier. And I am on a biologic and MTX. My rheumatologist is not concerned as feels risks are far smaller than many other things. The last big outbreak of salmonella (or maybe it was e.coli I forget) here was traced back to cucumbers!

But I do take great care over food hygiene, so won’t eat from buffets, or any shop where I think their food handling and storage doesn’t look good.

Sulpha has no issues attached to it as far as I know.

Haz58 profile image
Haz58 in reply tohelixhelix

Wow cucumbers! Not heard that before.

helixhelix profile image
helixhelix in reply toHaz58

From the BMJ: “An outbreak of severe bloody diarrhoea and potentially lethal kidney failure from infection with enterohaemorrhagic Escherichia coli (EHEC) in Germany has been traced to fresh cucumbers grown in Spain, and possibly to other raw vegetables”

So to me food handling and hygiene and washing vegetables is more important than avoiding blue cheese!

Neonkittie17 profile image
Neonkittie17 in reply tohelixhelix

Gosh, you’d think a cucumber was the least offensive thing re e-coli! I’m a big washer of most things. All fruit veg and salad and never buy bags of supposed washed salad. I grow my own lettuces/salad items. I don’t wash raw meat though but know people who wash raw chicken and beef. Cooking those properly at the correct temp will kill any bacteria and washing them is likely to spread more bacteria. Also it’s how you store it in your fridge and defrost it.

Jimminey profile image
Jimminey in reply tohelixhelix

I had 8 cases of food poisoning, 4 of them severe, in the first 20 months of taking sulfasalazine just before Covid came along (no one else was affected by the food; since Covid I have prepared my own), that my GP put down to immunosuppression by the drug. I have been searching in vain for any other information about this but am very desperate to find some just incase you might know where to look!

helixhelix profile image
helixhelix in reply toJimminey

How amazingly unlucky! I’ve read research papers that sulphasalazine does diminish B cells, but if you have an otherwise ok’ish immune system then that shouldn’t be too limiting.

All of this is so individual!

I do try to make sure my gut health is as good as it can be and in 8 years of triple therapy of MTX, sulpha and hydroxy I disn’t have so much as a stomach upset. Since starting on biologics I’ve had two viral infections. 1 food borne as my partner got norovirus from oysters and gave it to me, and who know about the other.

So I don’t really worry to much - but if I was in your position I probably would! Do you try to eat a wide range of natural foods?

Jimminey profile image
Jimminey in reply tohelixhelix

Thank you so much for replying.

I have, I believe, a fairly balanced diet mostly prepared from 'scratch' and plenty of fruit/veg, and have had no food poisoning since shielding - mainly due to Rituximab, which I started after the food problems but have now stopped. But I am still being very cautious due to a report I came across on this site: creakyjoints.org/living-wit.... The link in the Creaky Joints article to The Lancet Rheumatology is well worth following.

It would seem that the sulfa reduces the production of Type 1 Interferon, produced I believe by T cells and is used by the immune system to protect against virus, bacteria, fungi and parasites. My Rheumy department have not known any one else have food poisoning problems and I have asked before on this site if any one has but with no takers!

I'm sorry to hear about the infections, especially the novo virus which I've heard is not unlike food poisoning, and that from oysters (not that you seem to indulge!) can be quite nasty (also campylobacter?).

As you say, it is all so individual, including the reactions to the medication.

helixhelix profile image
helixhelix in reply toJimminey

interesting article, but also curious that seemed to be relating to lupus patients. Is there something about lupus as a disease that enhances this vulnerability I wonder?

We just each have to make our choice, and do the best we can.

rmros profile image
rmros

The advice I was given was to practise "good food hygiene" and be cautious with things like cured meats and unpasteurised cheese (basically any animal products that aren't heat-treated/cooked) - it's roughly the same advice given to pregnant women because there's an increased risk of things like salmonella in these foods. There's no inherent risk due to the medication, it's just it would be worse for you if you were unlucky.

I don't pay too much attention to it but I do use this as an excuse to refuse raw oysters at family Christmases 😁 as I only like the cooked oysters Rockefeller we have (is oysters at Christmas a normal tradition or just us?). It's a good thing because one year the whole family came down with food poisoning except me.

Haz58 profile image
Haz58

Thank you rmros. Good job you didn't partake!

bpeal1 profile image
bpeal1

I’ve never been told to avoid any food. I regularly eat cured meat, unpasteurised cheeses, pate and raw egg in things like soft meringue and mousse. Like helixhelix I’d be more concerned about food storage and handling.

Runrig01 profile image
Runrig01

I wasn’t given advice when I was on dmards, both MTX and Azathioprine. However when a biologic was added, I was advised to follow a pregnancy type diet. Here’s a screenshot of the leaflet I was given.

Diet
Mmrr profile image
Mmrr in reply toRunrig01

I never been advised to avoid any foods, even when on biologics.

AgedCrone profile image
AgedCrone in reply toMmrr

Me neither, & apart from raw eggs or undercooked food of any sort I eat everything others have been told to avoid.

nanny_bee71 profile image
nanny_bee71

Oh dear - I just googled the question and if you took notice of the list of foods to avoid you would probably starve!!!!! so I just enjoy what I eat when I want to eat it (healthy most of the time but with the occasional fall from grace)

Bakerannie profile image
Bakerannie

To be honest, I am on biologics, MTX, Pred and others, and I eat what I want including homemade kimchi and sauerkraut that ferments on my kitchen bench for days at a time. My GP, who is a traditional GP as well as a Functional Nutritional Medicine GP has advised me to perform safe food stewardship as mentioned above, rather than avoiding certain foods. The advice of avoiding buffets, washing produce well, paying attention to food spoilage and overall being attentive seems like a reasonable strategy for myself. I do avoid raw eggs, as over the years I have become ill after eating them, but this is a personal choice.

Drmjl18 profile image
Drmjl18

Some suggestion that grapefruit and its juice may inhibit absorption of the drugs. Perhaps worth asking about……not a terrible loss from your diet vs cheese!

Haz58 profile image
Haz58 in reply toDrmjl18

Yes I can't have grapefruit with some meds I'm on. Cheese always wins 🤗

AgedCrone profile image
AgedCrone in reply toHaz58

Yes,,,,,,when grapefruit or its juice will affect prescription meds it’s written on the label …..on mine I says “Do not eat grapefruit products within one hour of taking this medicine “

CagneysMum profile image
CagneysMum

I don’t exclude any food groups from my diet which includes unpasteurised milk that I make kefir from, soft/blue cheese, pate, sushi etc. But I am very careful about food hygiene. Not advocating this approach for everyone but my consultant has said everything within reason …. he even found a way for me to safely have a yellow fever (live) vaccination before travelling to rain forest, which others had said was not possible for someone with my condition.

There was a study/ survey some time back about aging populations globally and diet. The conclusion seemed to be ‘don’t be British’ 😂. All things in moderation is the best. Eat natural foods whenever possible. Try and avoid processed foods/ gluten, but cheats are allowed…

cyberbarn profile image
cyberbarn

I have until very recently drunk unpasteurised milk nearly straight out of the cow. I made cheese with it and still make my own cheese. I eat raw eggs from my own chickens, make my own paté, and basically prepare or cook all food from scratch. I agree with CripLady; eat food, mostly vegetables, in as close to its natural state as possible.

Blackwitch profile image
Blackwitch

Hi Has58. I’m about to start biologics (if they ever arrive) and have been told not to eat any unpasteurised cheese, drink unpasteurised milk, make sure salads are well washed and eggs are cooked well. I think the same goes with meat as there’s a risk of E-coli. I was certainly never told this for any DMARDS. 🙂

Sunshinereturns profile image
Sunshinereturns

I can’t eat nightshade vegetables or I’m in agony all night - no tomatoes (so very difficult when I go to an Italian restaurant, my kids’ favourite!), no peppers and no aubergine. Luckily I can eat potatoes with no ill effect. If I try to introduce even a tiny bit of tomato I’m awake the full night in intense pain in my joints.

KittyJ profile image
KittyJ

just to add I’ve been on dmards and until a couple of years ago pred for 30 + years and never avoided any foods nor been told to and am rarely ill 🤷🏻‍♀️

Tobymax35 profile image
Tobymax35

I’m on a biological injection I can’t have goats cheese brie certain pâtés medium rare meat 🥩 eg beef steak 🥩 can bring on a infection that’s y

Wobbies profile image
Wobbies

I am on infliximab infusions and MTX. Caught food poisoning campylobacter from chicken when I had a meal in a restaurant. It was terrible and bowel has never returned to normal or as normal as it ever does with IBS. So, I am extremely wary of everything now.

Haz58 profile image
Haz58 in reply toWobbies

That's awful. It happened to me on our last night before flying home from Majorca a few years ago. So I'm very wary of chicken in restaurants now.

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