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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi all, just got back from a visit to see the rheummy nurse. He's gone through the preview form with me for leflunomide and as long as my blood tests are ok, I should get the prescription late next week. I am nervous about taking it as I had such an awful reaction to sulphazalazine, but am so hoping that it works! He said the main side effects were raised blood pressure, diarroah (sp???) and appetite loss.
I asked his advice about being turned down for dla and he said to get a letter from the gp to back it up and also to have a think about applying for a blue badge. Apparently, these are given out to people for short term use, ie annual and are not means tested etc etc.
He did notice on my blood tests that my liver function had doubled and said that could be due to antibiotics or alcohol, given that Ive had neither I was a bit concerned, anyone else have any ideas?
Speak soon!
lots of love
Heatherxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Heather, My liver results have been up a few times, but it was always down to the RA drugs, in particular leflunomide. I had to stop taking it after a short time. That doesn`t mean the same thing will happen to you. I know a few folks on here have had this happen while on MTX. Usually the drug is stopped for a while, until the LFTs return to normal. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Glad you saw your rhummy nurse. I started lefl on 13th june but stopped it
4 weeks later as I had extreme migrane type heads - awful. I spoke to me nurse
and my spec on holiday for 2 weeks so I am on hold at the mo.
Drugs effect people differently , so good luck and keep posting. If you don't
drink any kind of achohol and your liver results still high , I think I would ask
for a second opinion.
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Heather,
Try not to worry too much about starting on Leflunamide.
I also had a very bad reaction to Sulpha but then went on to take Leflunamide and I am here to tell the tale! Not that it did much for me mind, but like Rose says, we are all different and some people find it very effective.
My liver enzymes went up with Sulpha, it could be that that has caused yours to be raised, I'm surprised the rheumy nurse didn't make the connection. Glad he's backing you with the DLA though.
Good luck for when you start the Leflunamide and lets hope it turns out to be your wonder drug!
Love, Doreen xx
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Rank: Newbie
Groups: Registered
Joined: 7/26/2010
Posts: 5
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Hi Heather, hope that the Lefu works well for you. i had a bad time on the Sulza. You can get a blue badge through your council as well, your doctor would need to sign the form for you. That would help you while your waiting for you Dla. Are you going to appeal with Dla? Or are you putting in a new claaim? It's best to get someone to help you with these forms as you need to be very specific when filling them out. The disabilty alliance , do a Disabilty rights handbook, which would help you with your claim. it's also full of useful information about other benefits all the best.
Angela
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hi Heather-good luck with all this. I've had a few ups and downs re liver but nothing ever seems to come of it. I love the delicate question--"have you been celebrating recently?" which they always ask me!!! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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JulieM wrote:Hi Heather-good luck with all this. I've had a few ups and downs re liver but nothing ever seems to come of it. I love the delicate question--"have you been celebrating recently?" which they always ask me!!! And have you Julie?? Come on, do tell!! Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 59
Location: North Bucks
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Hello
I just popped on here, haven't been on for a while!
I have been taking 20mgs Leflunomide for over 3 years with little problem, we are all different, MTX interfered with my liver. First with SLZ then alone, RA is usually well controlled and l am very happy with it as a DMARD.
I hope it works for you and you have no problems, l think l had some nausea at the start but didn't last long, liver functions normal on monthly tests.
Christine xx
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi everyone, thanks for the replies. I am so hopeful that leflunomide works as although the flare Im having at the moment isnt a major one, its annoying and painful, but I just want to get on with some tablet taking and get this bugger under control! Im off work for the summer and would really like to enjoy it!!
Kev (my husband) and I had our first "date night" last night! Something we had decided to start doing as Jack and Katie, 19 and 16 have their own socia lives, and although we do socialise as a family, we decided we needed "us" time. Anyway, we just walked up to the local chinese restaurant in our village (about 10 mins walk) it was really lovely, was totally stuffed! Relaxed and chatted and yes had 2 drinks, hope it doesnt effect my liver toomuch!
thanks again for the replies, will keep you posted re leflu and dla, and also the blue badge!!
lots of love
Heatherxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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heather1 wrote:Hi all, just got back from a visit to see the rheummy nurse. He's gone through the preview form with me for leflunomide and as long as my blood tests are ok, I should get the prescription late next week. I am nervous about taking it as I had such an awful reaction to sulphazalazine, but am so hoping that it works! He said the main side effects were raised blood pressure, diarroah (sp???) and appetite loss.
I asked his advice about being turned down for dla and he said to get a letter from the gp to back it up and also to have a think about applying for a blue badge. Apparently, these are given out to people for short term use, ie annual and are not means tested etc etc.
He did notice on my blood tests that my liver function had doubled and said that could be due to antibiotics or alcohol, given that Ive had neither I was a bit concerned, anyone else have any ideas?
Speak soon!
lots of love
Heatherxxx Check out the anti bi ocs because i am on long term .Not on packet but in docs booklet i must not be on Statins while taking them .Afects liver why not on Statins as well as the anti bo ics and MTX . And my belly hates it .Always have food with pills christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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Kathleen_C wrote:JulieM wrote:Hi Heather-good luck with all this. I've had a few ups and downs re liver but nothing ever seems to come of it. I love the delicate question--"have you been celebrating recently?" which they always ask me!!! And have you Julie?? Come on, do tell!! Kathleen x yes julie lets know i like have you been celebrating sounds like me lol  sylvia
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