Terriefied of Enbrel

mrsachybear

Please excuse my lack of knowledge and terminology as I am a newbie

I was diagnosed with Psoriatic arthritis last month and my Rheumatoligist has applied to NICE for funding for Enbrel.

Since the appointment I have been reading up on it and have to say I am terrified of the sound of it.

In their website it says to avoid infections. Do they mean the common cold? I am wondering how easy this will be as I have a 5 year old who is at school, a 1 year old who is at nursery full time and I work in an office packed full of people. So avoiding illness for me would be pretty challenging.

It also states that you should contact your G.P. at the first sign of illness. I really don't want to put myself in a situation where I am having to take time of work because I am constantly ill or forever in the G.P.'s surgery because I have a bit of a sniffle.

If you could share your experiences of life on Enbrel I would be very grateful

[Deleted User]

Hello mrsachybear welcome to the forum,Everyone here is friendly and will try and help you if they can.LWA and Chit Chat are our most busiests but you c hoose the one you are most comfortable with.
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From the moderator on friday

As5567

I took Enbrel years ago (While at school) and I have also taken many other Biological drugs, I have not noticed an increase in illness but an actual decrease.

How you ask? Well its simple I was strongly advised by a nurse to wash my hands frequently throughout the day, avoid touching the face with my hands and ALWAYS wash my hands before food. We also have a house rule where everyone must wash their hands when they come home, it almost becomes automatic once you get used to it. This would be my advice to you.

There only difference I have noticed is that if for example I get a cold then it will hit quick and hard and last longer than it does for most people, but there is no need to see a doctor for things like colds and coughs, only things like throat infections and lingering coughs which could be a bacterial infection. I was told Viruses are not so much an issue on Biological therapy as most will just run their course and eventually our immune systems kill them off, its bacterial infections which you need to see a doctor about, seeking early advice is important.

You also need to ask yourself, what would be better....being in terrible pain and not being able to live your life as you intended or take the Enbrel and hopefully be without much pain.

Good luck with the drug, and dont be afraid to ask the rheumatology nurses any questions, they are usually very experienced with these drugs and will closely monitor you for the duration of your treatment

theresak

Hello there, and welcome to the forum, though I'm sorry about your diagnosis. I have the Rheumatoid type of arthritis ( RA ) but the drugs are mostly the same.

Enbrel is a biologic anti-TNF therapy. If you've been reading up on it you will probably know how it works. I'm on humira, another anti-TNF, and have been for over eight years now. All these meds have a whole raft of POSSIBLE side-effects, but the key word there is POSSIBLE. You may not have any - I was lucky enough not to.

You have read that we are supposed to avoid infections - we can be more vulnerable to infections because of our suppressed immune system. What I do is take basic precautions - hand washing, maybe anti-bacterial gel etc. You will be entitled to an annual flu jab, and a pneumonia jab.

I don't contact my GP unless I have a raised temperature or a nasty cough. You will have your bloods monitored regularly, so a close eye will be kept on you, and any problems soon picked up.

Someone will reply who is an enbrel user, but try not to worry - enbrel has been in use a long time now, and can be very effective. I haven't had a greater number of infections since I started the biologic therapy.

Keep posting and let us know how you go on.

Tezz x

LignumVitae

Welcome from me too. As others have said, it isn't as bad as it sounds. I have two children and I was on Enbrel last year before changing on to Humira. The infection risk isn't so hard to deal with and it just meant that when my two had a virus I got the virus but developed a throat infection too. My GP understood the implications and started me on antibiotics where, if I hadnt been on Enbrel, he might just have left me to fight it. I haven't noticed any change other than that. My two had a cold a fortnight ago, I didn't get anything and it wasn't for lack of mopping snotty noses!

Talk to your consultant if you are worried or your specialist nurse if you have one. Before I started Enbrel I did consider the implications of the side effects and decided they were nothing compared to allowing arthritis to run riot in my body.

dreamdaisy

Hello, I too have PsA but had to wait for years before being granted an anti TNF drug because other 'easier' and definitely cheaper meds had to be done first - I am paying for that delay in fine style! You may not think it but I reckon you are very fortunate in maybe getting onto one of the big guns so quickly, hopefully this will really slow the progression of the disease and avoid joint damage. You say the rheumatologist has applied for funding - it is not guaranteed that he will be successful.

All of the meds sound scary when you first read up on them but my view is that side-effects are not guaranteed. I have had a lifetime of taking medical drugs which probably contributes towards my insouciance, I am on a triple therapy of injected methotrexate, injected humira and sulphasalazine: I have been taking the latter for nearly thirteen years and have developed tinnitus but that only bothers me at night.

Because your immune system will be suppressed you won't necessarily be aware that you have an infection but as the others have said, they can be avoided. In addition to the hand washing (get the whole family involved with that) it's handy to carry a small bottle of gel and some anti-bac wipes to be used when out and about. We are slow to produce symptoms so when we do it could mean that we are in trouble - then you contact your GP. My hospital has always told me to stop my meds when I have in infection so I do, this means it clears off quicker because your immune system can help fight it.

Don't be scared - if it does what it should then the quality of your life should improve - what's not to like about that? I wish you well. DD

stickywicket

Hello and welcome from me, too. I've never taken enbrel but the potential side-effects of all the meds for auto-immune arthritis (I have RA) look scary on paper. I sometimes think it would be helpful if, alongside them, were listed the actual effects of the 'unmedicated' disease.

You've been given very good advice by the others. I'll just concur with DD that, to be offered enbrel so early on, would actually be a huge bonus. Normally we have to first fail on three DMARDS. I hope you get the funding and it works for you.

Dizzy

Hi

I've been on Enbrel for about 6 months now and I was worried like you because a couple of years before I started it, I'd had a bad abscess on my leg which took IV antibiotics to clear and no way did I want that back!

The only problems I've had were a couple of sickness bouts (24 hour bugs which I didn't contact Dr about...until the second one but that's cos I ripped my toenail off in the carpet...but anyway) and I was fine.

I didn't take the Enbrel the week I was ill but apart from that it all cleared up.

The only other thing I've had was a cold and the cough may have lingered slightly longer but I get hit pretty hard with them anyway.

Can you ask your Rheumy for a trial period, give it enough time to work and see how you're going. Then you can compare the benefits to the downsides. That's what I've done with methotrexate.

Can't offer much more advice, except maybe get a fridge thermometer if you decide to go on it, if you don't already have one. We didn't and the fridge was gradually going wrong when I first started which ended up with half a batch being tossed and much fun getting a replacement!

The blood tests are a pain but necessary. I'm very hard to get blood from so hopefully my consultant will allow me to cut down to 2 or 3 monthly once the methotrexate has been going a while...the blood test ladies run away from me I'm that difficult!

Hope that helps and I hope it works for you if you try it.

lynnoot

Hi there

I've been on Enbrel for about 7 years now, and can honestly say I haven't had may infections in that time.

I know it sounds scary, but I'm sure it will make a lot of difference to your quality of life, and if you are careful about hygiene you should be fine. I carry a small bottle of hand gel with me, and use it liberally when required.

Also, if you find yourself getting infections I'm sure you could just ring your GP, and because he/she knows you are taking Enbrel they should prescribe you antibiotics without you having to take time off work to see them.

lindalegs

Hello Mrsachybear and welcome to posting on the forum.

Enbrel is wonderful!

I have been injecting since 2011 and it has changed my life for the better.

I can't say I've had any more coughs/colds/illnesses than I would've ordinarily although when I have they've probably taken a bit longer to clear. You are younger than I and have that on your side for a start and if you eat a healthy balanced diet that will help ward off illnesses.

Don't forget that your Psa needs to be got under control so it doesn't damage you and I can assure you your quality of life will improve once taking it.

I discovered something called energy again and the awful damage my RA wreaked on my body has been stopped. I would be devastated if my beloved Enbrel either stopped working or was discontinued!

I just wish I could've had it years ago. :roll:

Please let us know how you go on.

Luv,

mrsachybear

I can't thank you all enough for your replies. I have been out of my mind with worry and you have now all put it at ease

If I do get Enbrel then it sounds as if I will be incredibly lucky. My rheumatologist seemed extremely confident that I would get accepted but I don't understand why as I have only tried one other anti inflammatory. I guess I will find out on Monday.

Thanks for all the tips on hand washing and antibac gel etc., I'm glad I've found you lot

Chris01

I am a newbie too, just like you. I have never used enbrel but what I feel if you wish to avoid infection in outside area, always carry a quick hand sanitizer with you. Imbibe same habits for everyone in family, so that even they don’t carry infections from outside to the home. Stay away from people who are sick or have infections. I know this could be a little difficult since you’re full time working but try to do as much as possible. There are already some best suggestions given here, so I will not dig much on same.
You should contact your doctor, if you have signs of infection such as fever, cough, sweating, tired feeling, or if you feel short of breath. This is important as Enbrel can lower blood cells that help your body fight infections. Hope you get on well with Enbrel. Try to keep your regular appointments with your doctor, as your blood may need to be tested often. My best wishes.
Chris.

dreamdaisy

Enbrel is not an anti-inflammatory medication, neither is it a DMARD (disease modifying anti-rheumatic drug) let alone an NSAID (non-steroidal anti-inflammatory drug). It is one of the very big and very expensive guns but it didn't suit me (and I won't tell you why because I know it works very well for others). Hopefully you may be included in that gang if you are granted access: if so all I can advise is to be conscientious in doing regular blood tests. DD

lindalegs

I think you'll find that your Rheumy will make sure you have regular 6 monthly bloods. If you don't he/she won't prescribe your next order of Enbrel. That's how it works here.

Luv,

dreamdaisy

I rather envy Legs the six-monthly bloods, it took me sixteen years to reach the giddy heights of bi-monthly. Initially they were fortnightly and that lasted for a good few years.

As you can see all our experiences vary so widely so we cannot provide anything like accurate guidance. DD

lindalegs

dreamdaisy wrote:

I rather envy Legs the six-monthly bloods, it took me sixteen years to reach the giddy heights of bi-monthly. Initially they were fortnightly and that lasted for a good few years.

As you can see all our experiences vary so widely so we cannot provide anything like accurate guidance. DD

It might be because you're on a cocktail of meds that you have blodds done so often. I'm only on Enbrel and normal analgesics so perhaps my medical team don't have to be so vigilant. Your disease is possibly a lot more active than mine too, Dreamdaisy. It's better that they're keeping a good eye on you.

Love,