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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi I've been on enbrel since August last year I responded well to it and all inflammation in my knuckles had gone , I do have a lot of damage to other joints but that's because I've had ra for 17 years and consultant said I have erosive arthrits . Last couple of weeks I've had flares and pain in different joints but now my left elbow has been troubling me , hot and painful to move its one of the joints that had not been effected by ra so I'm finding it very worrying as I don't want any more joints getting eaten up by ra , I'm going to Scotland on Monday with my mum and son so will have to just take pain killers till I come home and ring hopsital , I've already tried Rituximab but that didn't work , was really hoping enbrel would of worked for a couple of years , my question is , is any one else on enbrel and having flares or do you think this drug is not working for me now ?
Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sophie Sorry to hear Enbrel isn't cutting the mustard at the moment. It's possible that it's a temporary flare that's causing the problem, only time will tell on that score. If it doesn't settle quite quickly it may suggest that Enbrel isn't keeping the disease at bay and something else is needed. When I was on Enbrel I kept relatively well throughout until it started to lose it's efficacy when flares became a regular feature. Sounds like a hospital call may be the way forward. Really hope you get some relief and are able to enjoy your trip to Scotland Sophie. Let us know how you get on, there's lots more drugs out there! Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Lyn thanks for the reply , this is the second flare in a couple of weeks , I have a Follow up appointment middle of September anyway but will just see how I am next week , pain and inflammation seems to be moving from one joint to another and all I want to do is keep ice packs on my knuckles as they are permanently hot . Its good to hear your experience with enbrel as you were on it for a long time .
Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Sophie
I have not seen you on here for a while so nice to have contact with you. I am sorry to hear about your flare up in your joints. I have been on Enbrel for 7 years and like you I have been recently getting massive flares of inflammation, all in my elbow and spine, it's so frustrating isn't it? I was advised when I first went on Enbrel that you can still get flare ups and that has happened over the years, particularly in the first year, which have usually settled down with a steroid shot or two. Do you feel the drug has stopped working altogether? Do you take anything else with Enbrel, have they tried adding methotrexate or another DMARD?
I am seeing my rheumatologist in a couple of weeks so I can report back to you afterwards what he suggests. It sounds like you need an appointment with your specialist.
Hope you manage to enjoy Scotland, I so love the peace and serenity up there.
Best wishes
Rebecca
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Hi Sophie
I have been on Enbrel for 9 years, was part of the trials as nothing else was working for me. I do still have flares but fortunately they do not last long. As already advised, I think that you should get in touch with your RA nurse at the hospital so that they can maybe look at your medication again.
I hope that you were able to enjoy your holiday and that you can get things sorted out soon.
Best wishes
Lisa
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Thanks for your replies ladies , just got back last night . Had a flare the first night and only got two hours sleep so could not go out stayed in bed all day to rest , mum took my son to see Edinburgh castle . Managed to get out the rest of the days and sight see , hotel was brilliant and was able to have bags of ice delivered to my room from the hotel staff  Which helped me . I take Sulfasalazine with Enbrel and Etoricoxib , tried Methotrexate years ago and could not tolerate it . I have an appointment on September 11 th to see consultant ( follow up appointment ) but will ring helpline on Monday don't know if they will get me in any earlier. Sophie x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Went to my hospital appointment yesterday and came out crying ! They have orderd ultrasound on my knuckles as I have tendon some thing or other ( inflamed tendons ) some have split , they said I will need to see hand surgeon , nurse said she hadn't seen such a bad knuckle ( on my left hand ) but its the right hand middle finger thats dislocated and killing me .I know I need right knee replaced but was trying to put that one off for as long as i can but they said they prefer to do hands after my knee ( but my hands are what are hurting me more ). I told them ive been flareing and they said i can flare with enbrel , but after surgery I might try another biologic . My right shoulder was xrayed yesterday as its been crunching ! It ached all last night after they had been moving it . Mum has said she will pay to go and see hand and knee surgeons privatly so I can ask them some questions as I do have some worries , and I don't want to wait months to see them on NHS .
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Sophie
So sorry to hear the latest, no wonder you feel so low and upset with all this new. I think going to see a consultant privately is the very best thing you can do, I had to do it once, and I did get the answers that I needed which helped a lot.
Hope you are not quite so achy today, after it all you went through yesterday.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sophie
I am so sorry that you are having such a rotten time. Having damage to fingers, knees and shoulder is not good.
I had damage to both my knees but they replaced the one that is not so painful first as they said the damage was greater in that one. Unfortunately I think they look at x-rays and go for what looks the most damaged joints first.
I think it will be a very good idea for you to have a Private appointment. I have done this every time I have needed to see a Consultant. Not that my Rheumy team are not brilliant, they are, but it just gave me time to talk to the Consultant rather than rushing through a ten minute appointment on the NHS.
I hope that you are able to get your pain under control soon and able to get your joints sorted in whatever way possible.
Take care
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Thanks for your replies ladies , I am a real chicken when it comes to hospitals my fear is having to have a spinal as my lower back has not been right since my left knee replacement 3 years ago ! I can not have a general because of damage to my kneck so this is causing me stress just thinking about it , as for knuckle operations it's a needle in armpit so not as worried and quite looking forward to being pain free in hands  , will just have to wait and see . Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I've not got happy thoughts re hospital either but sometimes you just go, do what's got to be done then get off as soon as! Enbrel seems to work on lots of people but they can loose efficacy over time Perhaps you might like a drug review? Sometimes I think sticking with the drug is better and trying to manage the flair with steroids and pain killers etc Never an easy call Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Oh Sophie this disease just doesn't get any easier does it?
Knee replaced before hand op is a good idea because of using crutches after your knee replacement. I too can only have spinal and nerve blocks for operations, if your lower back isn't good discuss what else can they do?
Sounds like you need a change of painkillers and steroid boosts to get you through all these rebuilds.
I am getting more hospital phobic too, I think it's because I never have good news when I go.....
take care sophie, thinking of you
Love
Rebecca
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