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Date: 15.02.2014
From: helen

Subject: help..lefluemimide side effects

I'm on my 5th week on this tablet still on 1 every other day. They wanted to up it but my body is an itche scratch digging over and over day and night. If they up them nurse said it would get worse. Told to take antihistamine but one a day. Spoke to my own Dr she said I can take up to 40mg a day but still not calmed. Has anyone experienced this or can offer some help.
Helen. X
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Date: 15.02.2014
From: Bsk

Subject: Re: help..lefluemimide side effects

Are your blood results ok?
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Date: 16.02.2014
From: helen

Subject: Re: help..lefluemimide side effects

Bsk....Dr said bloods are OK whatever that means. Also I have a large gland come up lower part on my neck iv spoken to my own Dr said to keep an eye if anymore appear to go straight back to check groins and armpits but they are clear. This itch is awful iv got open sores over tum spots over arms and scabs that's being scratched off. My whole body is an itch I'm tempted to stop this tablet. But first I shall speak to rheumy nurses again tomorrow as spoke to them last week which said take antihistamine. Maybe I should get on with it but my poor hands and fingers hurts so much as it is let alone doing this day and night.
Any help or advise is appreciated.
Thanks
Helen.xx
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Date: 16.02.2014
From: bsk

Subject: Re: help..lefluemimide side effects

Sounds dreadful. I can't really help but I would ask them to see you and then they can see how bad it is. Have you tried any creams or anything like that?
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Date: 16.02.2014
From: helen

Subject: Re: help..lefluemimide side effects

Iv tried antihistamine tablets also the cream and camoline cream? I'm just going mad with it. This is my third drug for arthritis sulpha and methotrexate both horrid side effects also crp went up. Just getting nowhere fast it will be two years diagnosed in august and im still where I started or rather feel like it. My body is feeling bruised inside where I'm scratching and digging. Moan moan and moan always something lately. Thanks for reply bsk
Helen. X
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Date: 16.02.2014
From: bsk

Subject: Re: help..lefluemimide side effects

Helen, don't despair! I hope they get you on something more suitable soon. I've tried loads of drugs but got side effects on them all.
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Date: 18.02.2014
From: helen

Subject: Re: help..lefluemimide side effects

Hello bsk. Contacted rhuemy nurses help line Monday. Explained everything said to stop it but she would speak to registra and would be in touch. Another rhuemy nurse called today to stop the tablet for a WK then start it again and she will contact me in three weeks time to see if side effects have come back. Asked her if side effects do come back what would happen then she said they can give me another dmard drug. How many more times do you have to go thru suffer these horrid side effects. I feel like saying forget it I will go without. Bsk what do you take now or have you given up like I'm thinking.
Helen. X
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Date: 18.02.2014
From: Bsk

Subject: Re: help..lefluemimide side effects

Helen, glad you rang the rheumy nurse. I think you should see how you go. I'm not on anything at the moment but am about to start back on something. Leflueminide being one under consideration. I'm not keen as it can affect your liver. That's why I asked about your bloods.

To be honest, I'm fed up with it all as well but am trying not to think about it.
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Date: 19.02.2014
From: linda Bradley

Subject: Re: help..lefluemimide side effects

Hi Helen, no wonder you're fed up. All the messing about, a week turns into a month, then months.. then a year has gone and we're still no better off. Thats one of the meds they are thinking of giving me. Putting me off.. I get side effects off a thin air ...lol.
I've had a 2 week break, now waiting for my metaject from pharmacy.. (has to be ordered). The thought of it is making me shudder! I feel like saying sod it, and I've not been diagnosed as long as you have.
Fingers crossed for you and take care
Linda xx
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Date: 20.02.2014
From: helen

Subject: Re: help..lefluemimide side effects

Bsk. My liver and kidney bloods are not perfect. Hasn't repaired itself since sulpa did a lot of damage DEC 2012. My crp had been getting higher on mtx only good thing about that drug it helped clear my psoriasis up since stopping in Oct 2013 spots are coming back. I'd rather have spots than side effects. Leflumomide is quite nasty iv had to get my bp down before going on it which I'm now on 3 dif tablets to reduce it as this drug can increase it. I might not try going back on it to be honest I can't think for one minute my scratching digging symtoms is gonna be outta my system within a week for me to start this drug
again.Having bloods checked on Friday gonna SPK to the nurse about my swollen gland has become very painful and im getting bit concerned. Hope you get the right drug this time it does put you off keep trying dif drugs I understand not everybody can benefit from the same drug but at some point we and our body/mind cannot do it anymore. How long have you been off treatment?
From Helen. X
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Date: 20.02.2014
From: helen

Subject: Re: help..lefluemimide side effects

Hello Linda. Sorry your still not good. Are you suffering with side effects from mtx injections aswel. I was hoping this was gonna work for you. This leflumomide has giving me loose bowels no appetite and scratching digging to the point of causing bleeding. A gland has popped up now causing pain. I have enough pain I don't need anymore. Iv noticed today my moon face is shrinking so glad blimmimg steroids!! Have you managed to change and do mornings at work? Don't know how you do it,its so hard at times just to get outta bed and dress. Iv been to c.a.b today they helped me fill out DLA forms as its due for renewal in may. They sent me them just after Christmas saying get it done asap due to increase of claims so its going in the post Friday.
Take care
Love Helen. Xx
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Date: 20.02.2014
From: Linda Bradley

Subject: Re: help..lefluemimide side effects

Hi Helen, yeah, it still gave me headaches, and felt like I had the flu for 3 days. Have been sick too, but don't know if that's got anything to do with them. Girl hasn't handed her notice in yet so could be a few weeks yet till I do mornings..
Good luck with it all and take care
Big hug... Linda xx
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