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Date: 28.12.2015
From: Helena

Subject: Etanercept problems

Hi there was just wondering if anyone had any issues with Enbrel. My daughter had to start it in August and was amazing arthritis was nearly in remission then past few months she is struggling. Pale, no energy, raging thirst and tired all the time. Odd mini flare but generally very weak. Blood tests have shown low platelets so we are awaiting further tests. I was just wondering if anyone had experience this as its a little worrying for us and this forum really helped us in the past. She is also on methotrexate.
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Date: 28.12.2015
From: Colin W

Subject: Re: Etanercept problems

hi Helena , most of the people having problems with Enbrel is with a injection rash , I would talk to your rhrumy nurse or in the link section above Arthritis care & National Rheumatiod Arthritis Society have free helplines in the UK
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Date: 28.12.2015
From: lucy

Subject: Re: Etanercept problems

Hi Helena, I was on Etanercept (Enbrel) a few years ago but unfortunately it didn't help me and I came off it after a few months. Has your daughter been tested for diabetes? my daughter was thirsty and tired all the time and was losing weight before she was diagnosed with diabetes. A simple urine test would let you know if she was. I don't know if it could be a side effect to the Enbrel or methotrexate. Have they suggested she stop the medication to see if things improve? I hope she feels better soon and let us know how she gets on. x
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Date: 29.12.2015
From: Helena

Subject: Re: Etanercept problems

Hi Lucy oddly enough her thirst is severe with night sweats and she has lost over 1kg in weight but they tested her and said levels were 6.4 and urine OK. I took her of the Enbrel last week but will inject her today as her Rheum nurse advised against it but she wasn't as thirsty and had a bit more energy. Convinced its the medicine but have read up re drug induced lupus and she has all the symptoms. Thanks for replying she is back with the consultant next week so hopefully we will get her sorted
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Date: 29.12.2015
From: Helena

Subject: Re: Etanercept problems

Thanks Colin im going ring them before I next speak to her nurses. Have kept a diary of everything. Only thing she doesn't have is a rash but she has all other rare side effects but frustratingly it has worked for pain and her esr levels are down from 40 to 8 so you don't know what to do for the best
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Date: 29.12.2015
From: sleek fox

Subject: Re: Etanercept problems

Helena, I was on Enbrel and got side effects which meant I had to come off the drug. That was the consultant's decision but I wouldn't have continued even if they had disagreed. I had symptoms of MS, which they said was exceptionally rare. Luckily I came off it in time. I tend to make my own decision about whether to take a drug or not in relation to side effects and then tell my nurse/consultant what I am doing. They are also extremely cautious with me as I've had so many side effects. I prefer that approach.

I also found Enbrel good and was disappointed to come off it but not worth it if it going to give you something as bad/worse. There are other drugs to try. Best of luck next week.
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