food safty on embrel

hi , im new on here i have known i have ra for a few years now but i also have cystic fibrosis , osteo penia, gastro osphagal reflux disease, cf/rheumatoid arthritis ,and some minor renal problems. after trying sulfasalzim ,neproxin , indameticin , hydroxchloriquin , 12.5 mg methotrexate and running out of options . because i have chronic lung disease caused by my cf and a body that has enough trouble fighting infection without lowering my white cell count to combate the arthritis , my cf team and my reumatoligist have decided to try me on embrel . I am really hoping this will work for me , i am in constant pain with my joints and this is affecting all the other areas of my health because it causing me to not move as much as i need to . i am a mum of 3 boys and really push my self to stay on top of everything even when it feels iimpossible some times. I had alot of trouble getting the clerance for embrel because of the other health issuse and drs not being sure of what catagory to put ra in as there is a link with cf arthropathy too but i show signs of both. my main concern with this is food safty while on it and if anybody coud point me in a direction to find out what i can and cant safly eat . thanks xx hi wasn't sure how to answer in a way you would all see so am writing here :).thank you all for your responses and kind words they have all been helpful . It is also nice sometimes know you are not alone . My husband is wonderful but dosnt always understand how im feeling or know what to say or do to help . So to know that you are all here with me is a comfort. Thankyou all so much .

11 Replies

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  • Oh my, how on earth do you cope? You are so brave and I really admire you. I can be quite selfish with my RA as my home life is only me and my husband (and slightly dopey dog) as all children nicely married etc. I very, very much hope embrel works or at least helps you. You must be a physically and mentally strong person, and I hope you continue to succeed. Thank you for posting - please keep us updated. I know that you have all our best wishes. Virge

  • Because of its effects on the immune system, embrel can make you more more likely to pick up infections such as salmonella and listeria, which can result in food poisoning.

    products made from raw eggs

    unpasteurised milk

    soft cheeses feta and goat's cheese

    undercooked meat and poultry and pate ..

    all pretty much , similar advice given to pregnant ladies .. its all given to lower the risk of food poisoning ..

    good luck ,, i hope embrel works well for you

    andy x

  • Hi, I am using Embrel and like Andy says it's mainly those foods but if you read the information pack when it arrives it lists the main foods. You can also get more info on it if you type in Embrel in your search engine and hit on the Pfzer one as that's the company the make it. I have looked at this site and it's pretty much what the nurse tells you on her visits to your home before you inject. The only difference is if you watch the video they say count to ten before the button will release, I was told to count to ten after it was released before removing the pen. Good luck and I hope it will help you with at least one of your many illness's. xx

  • Hi loubylou, I feel the best way of knowing is your DR, or nurse. Also check with Pfzer, I am on Embrel, & I havent had any trouble with food, It is working for me, If It was a little stronger It would work better, but it cannt be my DR told me. I wish you well, hope your pain gets better with Embrel , It was slow when I first started it, now it takes the edge of the bad pain, plus I get some relief some times.

    All the best Hugs Lynette

  • I'm just really surprised at all the fears around foods and using anti-tnf drugs. This just doesn't seem to be an issue at all in prescribing in the US, and I'm wondering where the concern is actually coming from in the UK as I haven't seen anything written in medical research papers on it at all. In other words, I don't think there is any scientific basis for doing more than common sense stuff.

    Yes, there is some concern that your resistance is a little bit lowered (but not knocked out completely) by anti-tnf drugs, but thats certainly a lot less than what happens with some of the immune suppressant DMARDs. Yes, if you do get some kinds of infections, you do need to take extra care with anti-tnfs, including sometimes temporarily stopping them, but again, not a lot you can do to prevent getting bugs - its more a matter of if you do end up with an infection, making sure you get to your GP and get it treated early, as well as not deliberately exposing yourself to some of the nastier infectious illnesses if you can help it.

    Anti-tnfs are proving, the more research that is being done, to be far safer and more effective than most other drugs (including NSAIDs) that are used for arthritis in all its forms.

    You need to talk to your rheumatologist about the risks, but I'd be incredibly surprised if they suggested any restrictive diet to stop the possibilty of food-born infection. Avoiding things like salmonella is more about common sense (food hygiene basic rule "keep it hot, or keep it cold, or don't keep it at all") than a restrictive diet. Also things like mayo is only an issue for anyone if its home made, from raw eggs, that haven't come from a farm that has been salmonella checked - i.e. not an issue for probably more than 99% of the mayo eaten in the UK. Same with factory produced cheeses (would only possibly be an issue for very small farms that don't check their animals or milk quality often enough, and to be honest, most small farms would take more care than big ones).

    When you do go on enbrel, then the only thing you would need to do is just make sure you don't try and put up with any infectious illness too long - the moment you think you have something (especially if you have a temperature with it) - get off to your GP to get checked out.

  • i was given all the food safety speech , when i started MTX , not that i took any notice , this illness takes enough away from your life ,, it wasnt taking away my primula "with chives" on toast ... NO WAY .. :)

  • There is absolutely no way that primula with chives carries any sort of risk of infectious disease!!!!!!!!!!!!!!!!!!!! Who on earth gave you that advice????

  • I am told that if I have an infection or ever need any surgical treatment I have to stop taking the Enbrel until I am better or two weeks after the surgical treatment. Do you know what happens to the RA under these circumstances? How long before the symptoms return. I am on leflunomide too but the consultant would prefer me to come of it as I am doing so well on the Enbrel.... but I am scared I will get bad again if I have to stop it and am not covered by another drug.

  • Wow! what a lot you have to cope with. I do hope you have plenty of family and friends to support. It doesn't seem fair that one person should have so much.

    Do hope the Enbrel works well for you... it has done great things for me

    All the best xx

  • Hi Loubylou31

    It sounds as if you've had some very useful responses already, but there is a little information on reducing your risk of infection when on Enbrel on the Arthritis Research UK website, which I thought you might find helpful: arthritisresearchuk.org/art...

    As the others have suggested, most of the food hygiene is common sense but it would be worth discussing with the nurse, when they do get you started on the Enbrel, if you are concerned.

    Kind regards

    Sarah Kate

    NRAS

  • After everything . And finally seeing a light st the end of the tunnel my hopes were once again dashed the day before i was mant to start embed nurse phoned and said i couldn't have it to. All because i have cystic fibrosis aswell . Mum cf Dr the.js it cf relayed arthropathy but rhumatolagist think its ra but i font fit into a cayahiru because a decision can't be made. So impossible just to suffer on with it out of control whole my hands are doing and my knees so swollen my trousers don't fit around it... But hey things could be worse.

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